tag:blogger.com,1999:blog-80896749082213327432024-02-19T11:19:46.228-05:00A Very Special Case.My husband and I have four Children. Our fourth is a little boy named Case Daniel. This is his story and the lessons he's taught through his differences.Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.comBlogger229125tag:blogger.com,1999:blog-8089674908221332743.post-54972500292203633292019-06-23T07:16:00.003-04:002019-06-23T10:47:43.545-04:00About Case.<div>
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<span style="font-family: "helvetica"; text-align: center; white-space: pre-wrap;">Let me tell you all about the boy that is the inspiration behind A Very Special Family. </span></div>
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<span style="font-family: inherit; font-style: inherit; white-space: pre-wrap;">Before Case was born we knew he was sick. During the routine "gender scan" ultrasound they found a "spot on his kidney and a spot on his heart." They referred us to a high risk OB about an hour away from our home. In order to not drive myself crazy, I decided to tell myself it was nothing in the days counting up</span><span style="font-family: inherit; font-style: inherit;"> </span><span style="font-family: inherit; font-style: inherit; white-space: pre-wrap;">to the appointment. It was something. It was a lot of things. I'll never forget that day, the day I heard the laundry list of birth defects, health problems and complications my sweet baby had. I remember my world starting to blur. That day, in the OB office right after I was told our baby was sick I don’t remember much but I remember hearing the word “Grace”. It was clear and unmistakable. At the time, I thought the baby was a girl and that was to be her middle name. Once we got home from that appointment, I looked up the word Grace. Blessing and favor, that is the definition of Grace. That is what God was doing by giving be a </span><span style="white-space: pre-wrap;">perfectly</span><span style="font-family: inherit; font-style: inherit; white-space: pre-wrap;">, imperfect baby. He was giving me His blessing and favor. </span></div><div style="text-align: justify;"><span style="font-family: inherit; font-style: inherit; white-space: pre-wrap;">Those sonograms only got worse and harder. By the time I was 38 weeks pregnant it was safer to have Case on the outside rather than slowly dying on the inside. They told me not to expect him to live past birth and if he did survive to know that he would have a low quality of life. Thank God they were wrong. </span></div><div class="jwLWP _2hXa7 _3_7DB blog-post-text-font blog-post-text-color" data-block="true" data-editor="9rgf0" data-offset-key="4olri-0-0" style="border: 0px; box-sizing: inherit; font-family: raleway, sans-serif; font-stretch: inherit; line-height: 1.5; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline; white-space: pre-wrap;"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="4olri-0-0" style="border: 0px; box-sizing: inherit; direction: ltr; font-family: inherit; font-stretch: inherit; font-style: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; position: relative; vertical-align: baseline;"><span style="font-family: inherit; font-style: inherit; text-align: justify;">Case was born via c-section and thrown into a sea of NICU Drs and nurses, then promptly flown to Children’s Hospital NICU. He was 2 pounds, 13 ounces and 14 inches long at full term. He had heart, kidney and brain defects along with a slew of othe<span style="color: #050505;">r issues. </span></span></div>
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<span style="font-family: inherit; font-style: inherit;">After 5 weeks in their NICU it was time to go home! </span></div><div style="text-align: justify;"><span style="font-family: inherit; font-style: inherit;"><br></span><span style="font-family: inherit; font-style: inherit;">As Case grew, they started finding more and more issues in his tiny body. At 11 months old, after pumping, fortifying and trying to feed him bottles, it was time for a Gtube. He has a sub-muccus cleft palle, stomach, intestinal, and swallowing problems. His tiny, 9 pound body needed help and needed to grow. He had his tube placed on a Tuesday and that Thursday was Thanksgiving. We spent lot of holidays in the hospital. That was just one of many. </span></div></div></div><div class="jwLWP _2hXa7 _3_7DB blog-post-text-font blog-post-text-color" data-block="true" data-editor="9rgf0" data-offset-key="1pa0n-0-0" style="border: 0px; box-sizing: inherit; color: #050505; font-family: raleway, sans-serif; font-stretch: inherit; line-height: 1.5; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline; white-space: pre-wrap;"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="1pa0n-0-0" style="border: 0px; box-sizing: inherit; direction: ltr; font-family: inherit; font-stretch: inherit; font-style: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; position: relative; vertical-align: baseline;"><span data-offset-key="dqs4n-0-0" style="border: 0px; box-sizing: inherit; font-family: inherit; font-stretch: inherit; font-style: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; text-align: justify; vertical-align: baseline;">Case’s original diagnoses were, Failure To Thrive, Skeletal Dysformities, Multi-Custic, non-functioning left kidney and Hydronephosis in his right. Case also has several variants of his heart, lacked growth and other vital hormones and was born with multiple birth defects. Those were the health issues we left the NICU with. We felt confident we could handle all of that but as the months and years went on, they kept adding more and more specialists and finding more and more conditions</span><span data-offset-key="dqs4n-0-0" style="border: 0px; box-sizing: inherit; font-family: inherit; font-stretch: inherit; font-style: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; text-align: justify; vertical-align: baseline;">. </span><span style="font-family: "helvetica"; font-style: inherit; text-align: center;">Crainio Synostosis: Some of the sutures in his scull fused shut too early causing increased crainio pressure and required a full brain-scull surgery called Crainio Vault Repair. </span></div><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="1pa0n-0-0" style="border: 0px; box-sizing: inherit; direction: ltr; font-family: inherit; font-stretch: inherit; font-style: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; position: relative; vertical-align: baseline;"><span style="font-family: inherit; font-style: inherit; text-align: justify;">A Tethered Spinal Cord: this was released by a Nerrosurgeon. </span></div></div><div class="jwLWP _2hXa7 _3_7DB blog-post-text-font blog-post-text-color" data-block="true" data-editor="9rgf0" data-offset-key="58gg-0-0" style="border: 0px; box-sizing: inherit; color: #050505; font-family: raleway, sans-serif; font-stretch: inherit; line-height: 1.5; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline; white-space: pre-wrap;"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="58gg-0-0" style="border: 0px; box-sizing: inherit; direction: ltr; font-family: inherit; font-stretch: inherit; font-style: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; position: relative; vertical-align: baseline;"><div style="text-align: justify;"><span data-offset-key="58gg-0-0" style="border: 0px; box-sizing: inherit; font-family: inherit; font-stretch: inherit; font-style: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Chairi Malformation</span></div></div></div><div class="jwLWP _2hXa7 _3_7DB blog-post-text-font blog-post-text-color" data-block="true" data-editor="9rgf0" data-offset-key="lanj-0-0" style="border: 0px; box-sizing: inherit; color: #050505; font-family: raleway, sans-serif; font-stretch: inherit; line-height: 1.5; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline; white-space: pre-wrap;"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="lanj-0-0" style="border: 0px; box-sizing: inherit; direction: ltr; font-family: inherit; font-stretch: inherit; font-style: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; position: relative; vertical-align: baseline;"><div style="text-align: justify;"><span data-offset-key="lanj-0-0" style="border: 0px; box-sizing: inherit; font-family: inherit; font-stretch: inherit; font-style: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Neuropathic Dysmotility Disorder in his intestine. The nervous system that controls his intestines is broken. It sends signals for the intestines to contract constantly and has to be controlled by multiple medication. </span></div></div></div><div class="jwLWP _2hXa7 _3_7DB blog-post-text-font blog-post-text-color" data-block="true" data-editor="9rgf0" data-offset-key="2h628-0-0" style="border: 0px; box-sizing: inherit; color: #050505; font-family: raleway, sans-serif; font-stretch: inherit; line-height: 1.5; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline; white-space: pre-wrap;"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="2h628-0-0" style="border: 0px; box-sizing: inherit; direction: ltr; font-family: inherit; font-stretch: inherit; font-style: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; position: relative; vertical-align: baseline;"><div style="text-align: justify;"><span data-offset-key="2h628-0-0" style="border: 0px; box-sizing: inherit; font-family: inherit; font-stretch: inherit; font-style: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Peusdo Obstruction in the Intestines. </span></div></div></div><div class="jwLWP _2hXa7 _3_7DB blog-post-text-font blog-post-text-color" data-block="true" data-editor="9rgf0" data-offset-key="4m32k-0-0" style="border: 0px; box-sizing: inherit; color: #050505; font-family: raleway, sans-serif; font-stretch: inherit; line-height: 1.5; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline; white-space: pre-wrap;"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="4m32k-0-0" style="border: 0px; box-sizing: inherit; direction: ltr; font-family: inherit; font-stretch: inherit; font-style: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; position: relative; vertical-align: baseline;"><div style="text-align: justify;"><span data-offset-key="4m32k-0-0" style="border: 0px; box-sizing: inherit; font-family: inherit; font-stretch: inherit; font-style: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Multiple Intussception: Because of the severe intestinal issues, Case went into Intestinal failure years back and needed IV nutrition to live. He had a semi-permanent IV in the artery by his heart for 5 years. </span></div></div></div><div class="jwLWP _2hXa7 _3_7DB blog-post-text-font blog-post-text-color" data-block="true" data-editor="9rgf0" data-offset-key="26ioc-0-0" style="border: 0px; box-sizing: inherit; color: #050505; font-family: raleway, sans-serif; font-stretch: inherit; line-height: 1.5; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline; white-space: pre-wrap;"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="26ioc-0-0" style="border: 0px; box-sizing: inherit; direction: ltr; font-family: inherit; font-stretch: inherit; font-style: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; position: relative; vertical-align: baseline;"><div style="text-align: justify;"><span data-offset-key="26ioc-0-0" style="border: 0px; box-sizing: inherit; font-family: inherit; font-stretch: inherit; font-style: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Hypoglycemia</span></div></div></div><div class="jwLWP _2hXa7 _3_7DB blog-post-text-font blog-post-text-color" data-block="true" data-editor="9rgf0" data-offset-key="2es2d-0-0" style="border: 0px; box-sizing: inherit; color: #050505; font-family: raleway, sans-serif; font-stretch: inherit; line-height: 1.5; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline; white-space: pre-wrap;"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="2es2d-0-0" style="border: 0px; box-sizing: inherit; direction: ltr; font-family: inherit; font-stretch: inherit; font-style: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; position: relative; vertical-align: baseline;"><div style="text-align: justify;"><span data-offset-key="2es2d-0-0" style="border: 0px; box-sizing: inherit; font-family: inherit; font-stretch: inherit; font-style: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Russel Silver Syndrome: A form of Dwarfism</span></div></div></div><div class="jwLWP _2hXa7 _3_7DB blog-post-text-font blog-post-text-color" data-block="true" data-editor="9rgf0" data-offset-key="179lv-0-0" style="border: 0px; box-sizing: inherit; color: #050505; font-family: raleway, sans-serif; font-stretch: inherit; line-height: 1.5; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline; white-space: pre-wrap;"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="179lv-0-0" style="border: 0px; box-sizing: inherit; direction: ltr; font-family: inherit; font-stretch: inherit; font-style: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; position: relative; vertical-align: baseline;"><div style="text-align: justify;"><span data-offset-key="179lv-0-0" style="border: 0px; box-sizing: inherit; font-family: inherit; font-stretch: inherit; font-style: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Case has had around 30 surgeries and has been very, very sick at times. In July of last year his little body went into spite shock. Thank God and Children's he is okay.</span></div></div></div><div class="jwLWP _2hXa7 _3_7DB blog-post-text-font blog-post-text-color" data-block="true" data-editor="9rgf0" data-offset-key="accb-0-0" style="border: 0px; box-sizing: inherit; font-stretch: inherit; line-height: 1.5; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="accb-0-0" style="border: 0px; box-sizing: inherit; direction: ltr; font-stretch: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; position: relative; vertical-align: baseline;"><div style="color: #050505; font-family: inherit; font-style: inherit; text-align: justify; white-space: pre-wrap;"><span style="font-family: inherit; font-style: inherit;">Though the Drs have found many separate diagnose, the Genectics team at Children’s is still looking for a main diagnosis to pull it all together and make sense of it. </span></div>
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</span><div style="color: #050505; font-family: inherit; font-style: inherit; white-space: pre-wrap;"><span style="font-family: inherit; font-style: inherit; text-align: justify;">t’s been a CRAZY 8 years. There were times we thought we’d lose him. There were times we thought it was all too much to bear but by the grace of God we are all still standing. Case is thriving. His life is more normal than it’s been in a long time. He’s on 12 hours of tube feeds through a tube straight into his intestine. He’s on several meds 4 times a day and gets daily growth hormone shots. He’s our miracle and we can’t imagine life without him.</span><br></div></div></div><div class="jwLWP _2hXa7 _3_7DB blog-post-text-font blog-post-text-color" data-block="true" data-editor="9rgf0" data-offset-key="c6lla-0-0" style="border: 0px; box-sizing: inherit; color: #050505; font-family: raleway, sans-serif; font-stretch: inherit; line-height: 1.5; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline; white-space: pre-wrap;"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="c6lla-0-0" style="border: 0px; box-sizing: inherit; direction: ltr; font-family: inherit; font-stretch: inherit; font-style: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; position: relative; vertical-align: baseline;"><div style="text-align: right;">
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Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com0tag:blogger.com,1999:blog-8089674908221332743.post-55327516523479857672019-05-13T15:48:00.002-04:002022-01-11T09:03:31.212-05:00I'm a Terrible Soccer Mom<div class="jwLWP _2hXa7 _3_7DB blog-post-text-font blog-post-text-color" data-block="true" data-editor="2v6p8" data-offset-key="foo-0-0" style="border: 0px; box-sizing: inherit; caret-color: rgb(47, 46, 46); color: #2f2e2e; font-family: "open sans", sans-serif; font-size: 18px; font-stretch: inherit; line-height: 1.5; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline; white-space: pre-wrap;"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="foo-0-0" style="border: 0px; box-sizing: inherit; direction: ltr; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; position: relative; vertical-align: baseline;"><span data-offset-key="foo-0-0" style="border: 0px; box-sizing: inherit; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">It’s true. I am a terrible soccer mom. I don’t like the bugs and the porta potties. I dread spending a good part of the evening or Saturday morning sitting in a muddy field listening to my kids whine that they are hungry and bored when all I really want to do is put my sweatpants on and drink wine on my couch. </span></div></div><div class="jwLWP _2hXa7 _3_7DB blog-post-text-font blog-post-text-color" data-block="true" data-editor="2v6p8" data-offset-key="9dgl6-0-0" style="border: 0px; box-sizing: inherit; caret-color: rgb(47, 46, 46); color: #2f2e2e; font-family: "open sans", sans-serif; font-size: 18px; font-stretch: inherit; line-height: 1.5; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline; white-space: pre-wrap;"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="9dgl6-0-0" style="border: 0px; box-sizing: inherit; direction: ltr; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; position: relative; vertical-align: baseline;"><span data-offset-key="9dgl6-0-0" style="border: 0px; box-sizing: inherit; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">I’ve successfully avoided volunteering for the mandatory confession stand job for an embarrassing amount of time. And worst of all....I’ve MISSED games do to work and (usually) don’t feel guilty about it.</span></div></div><div class="jwLWP _2hXa7 _3_7DB blog-post-text-font blog-post-text-color" data-block="true" data-editor="2v6p8" data-offset-key="3lajl-0-0" style="border: 0px; box-sizing: inherit; caret-color: rgb(47, 46, 46); color: #2f2e2e; font-family: "open sans", sans-serif; font-size: 18px; font-stretch: inherit; line-height: 1.5; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline; white-space: pre-wrap;"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="3lajl-0-0" style="border: 0px; box-sizing: inherit; direction: ltr; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; position: relative; vertical-align: baseline;"><span data-offset-key="3lajl-0-0" style="border: 0px; box-sizing: inherit; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Okay...before you start thinking I’m a terrible mom (too late?) let me explain...I love my kids. I love them so much my heart could EXPLODE. They are smart and funny. They are kind, considerate and helpful. And mostly, I really enjoy spending time with them and even though I’m a terrible soccer mom, I love watching them improve each season. I love watching their faces when they try to pretend they aren’t over the moon excited about the goal they just scored or the assist they just successfully made. I love when they do something awesome on the field and look directly at me as if their eyes are saying, “Holy crap! Mom! Did you see that?!”</span></div></div><div class="jwLWP _2hXa7 _3_7DB blog-post-text-font blog-post-text-color" data-block="true" data-editor="2v6p8" data-offset-key="fipdt-0-0" style="border: 0px; box-sizing: inherit; caret-color: rgb(47, 46, 46); color: #2f2e2e; font-family: "open sans", sans-serif; font-size: 18px; font-stretch: inherit; line-height: 1.5; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline; white-space: pre-wrap;"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="fipdt-0-0" style="border: 0px; box-sizing: inherit; direction: ltr; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; position: relative; vertical-align: baseline;"><span data-offset-key="fipdt-0-0" style="border: 0px; box-sizing: inherit; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Here’s the thing, we live in a society where moms aren’t only expected to do everything (work, volunteer at school parties, make Pinterest perfect birthday snacks and host Birthday parties the neighborhood moms are jealous of) but often shamed if they don’t. Let me tell you a secret….we can’t do it all AND we don’t have to. I’ll never forget they day I drove my then 4 year old, Lainey to preschool with a puking, tube fed toddler in the seat beside her. It was barely 9am and I already felt done. When we showed up I realized it was Christmas party day. Not only did I completely forget to bring a snack and goodie bags for her to pass out but when I started looking at all the little girls dawned in red and green dresses and bows I realized she had her thanksgiving dress on. The one with leaves plastered all over it in bright fall colors. My heart literally sank. I stood there fighting back hot tears. “How could I fail her like this? How does everyone else make this look easy? Careers, kids, sports AND they remembered it was Christmas party day!” That was a good 6 years ago and it sticks fresh in my mind like a recent occurrence. </span></div></div><div class="jwLWP _2hXa7 _3_7DB blog-post-text-font blog-post-text-color" data-block="true" data-editor="2v6p8" data-offset-key="1grrs-0-0" style="border: 0px; box-sizing: inherit; caret-color: rgb(47, 46, 46); color: #2f2e2e; font-family: "open sans", sans-serif; font-size: 18px; font-stretch: inherit; line-height: 1.5; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline; white-space: pre-wrap;"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="1grrs-0-0" style="border: 0px; box-sizing: inherit; direction: ltr; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; position: relative; vertical-align: baseline;"><span data-offset-key="1grrs-0-0" style="border: 0px; box-sizing: inherit; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">This is not okay. It’s not okay how I immediately started comparing my self to moms I barely knew and how terrible I let those mostly made up comparisons make me feel. We need to stop telling ourselves we aren’t good enough. We need to give ourselves a little grace!!! I can’t make it to every game my kids play. I stoped volunteering for their school parties when it started causing fights between them (“No! I want mom at my party!”) and started making me feel super stressed trying to figure out how to schedule work around them. Oh, and I’ve erased the Pinterest app on my phone (not really....but I mostly only use it to look up browning recipes I’ll never make and browse inspirational quotes). What I now do is stop by to have lunch with them when I have free time, make it to every concert, Halloween parade and Stem night I can. Instead of signing up to be at the Valentines Day Party or the spring food drive donate snacks and buy all the pop tarts off the shelf (you’d be surprised at how happy taking boxes of Pop Tarts in to “help feed the kids that don’t have a lot” males my 2nd grader smile).</span></div></div><div class="jwLWP _2hXa7 _3_7DB blog-post-text-font blog-post-text-color" data-block="true" data-editor="2v6p8" data-offset-key="dhcb5-0-0" style="border: 0px; box-sizing: inherit; caret-color: rgb(47, 46, 46); color: #2f2e2e; font-family: "open sans", sans-serif; font-size: 18px; font-stretch: inherit; line-height: 1.5; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline; white-space: pre-wrap;"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="dhcb5-0-0" style="border: 0px; box-sizing: inherit; direction: ltr; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; position: relative; vertical-align: baseline;"><span data-offset-key="dhcb5-0-0" style="border: 0px; box-sizing: inherit; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Does confessing all of this make me a bad mom? No. Does having a career, being a stay at home mom, forgetting dentist appointments or feeding your kids chicken nuggets for the third day make you a bad mom? No. You do you and if working late to provide for your family while loving what you do means you miss a soccer game, oh well. Your kid is going to be OK. Better than okay even. They will see your love, your dedication and your work ethic and maybe they will parent completely differently than you. That’s okay too because every family needs to function in a way that the WHOLE family benefits, thrives and grows. </span></div></div><div class="jwLWP _2hXa7 _3_7DB blog-post-text-font blog-post-text-color" data-block="true" data-editor="2v6p8" data-offset-key="ctucb-0-0" style="border: 0px; box-sizing: inherit; caret-color: rgb(47, 46, 46); color: #2f2e2e; font-family: "open sans", sans-serif; font-size: 18px; font-stretch: inherit; line-height: 1.5; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline; white-space: pre-wrap;"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="ctucb-0-0" style="border: 0px; box-sizing: inherit; direction: ltr; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; position: relative; vertical-align: baseline;"><span data-offset-key="ctucb-0-0" style="border: 0px; box-sizing: inherit; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">I’m a terrible soccer mom and that okay. </span></div><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="ctucb-0-0" style="border: 0px; box-sizing: inherit; direction: ltr; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; position: relative; vertical-align: baseline;"><span data-offset-key="ctucb-0-0" style="border: 0px; box-sizing: inherit; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><br /></span></div><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="ctucb-0-0" style="border: 0px; box-sizing: inherit; direction: ltr; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; position: relative; vertical-align: baseline;"><span data-offset-key="ctucb-0-0" style="border: 0px; box-sizing: inherit; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><br /></span></div><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="ctucb-0-0" style="border: 0px; box-sizing: inherit; direction: ltr; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; position: relative; vertical-align: baseline;"><span data-offset-key="ctucb-0-0" style="border: 0px; box-sizing: inherit; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><br /></span></div><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="ctucb-0-0" style="border: 0px; box-sizing: inherit; direction: ltr; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; position: relative; vertical-align: baseline;"><span data-offset-key="ctucb-0-0" style="border: 0px; box-sizing: inherit; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><br /></span></div></div>
<img src="https://static.wixstatic.com/media/7acc0e_7a2942d07b2343cba4ce1f2c892d6cdd~mv2.jpg" />Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com1tag:blogger.com,1999:blog-8089674908221332743.post-46093038009803681872019-04-06T17:24:00.001-04:002019-04-06T17:33:28.842-04:00The Messy Side of Medical Momming.Being a medical mom is hard, beautiful, exhausting, rewarding and often messy. When you walk in our home and look closely, you'll see medicine on our ceiling, formula stains on our furniture, medical equipment in corners and medical papers stacked so high, you'll think we are applying to be the stars of the next Hoarders.<br />
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Before our son Case was born a clean house, order and organization were very important to me. Before leaving the house, I made sure everything was straightened, and the main rooms were swept and vacuumed...It sounds insane 8 years later. Things are so different now. Instead of living in a predictable world, we live in semi-orderly chaos. Our days are long and are nights at times are longer. Getting going in the morning is like a fast bolt to the last train taking off in the station, insane! With four kids, a husband that works crazy hours and a job of my own, my priorities have changed drastically. I no longer straighten the house before leaving it, as long as no water is running and the pets are alive, we're good to go!<br />
Dose that mean the old, perfectionist Liz that let clutter and mess give her anxiety never shows up? No, no it doesn't. She does show up and whispers in my ear discouraging things like, "Look at this mess! Why can't you just get ahold of it?! Surely there is a way to do it all! Get up earlier! Stay up later! Figure it out! You are the mom! You should be able to hold it all together!"<br />
Then....I explode a bag of formula in the living room, tell her to shut up and have a good cry....<br />
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GUYS! Medical momming is HARD!! So, so, hard and somedays you are sure the old saying, "What doesn't kill you makes you stronger" is completely true! You've also convinced yourself in that moment that you've reached the end of getting stronger and you'll soon be dead on the floor covered in formula and paper work.</div>
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This medical journey is long and when we look at it all at once it looks like an elephant standing huge and immovable in front of us but, as a wise woman once told me, "You've got to eat the elephant one bite at a time." </div>
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Ask for help eating the elephant and then the the next one but most importantly, don't refuse help because you think you should be able to do it alone. NO one expects you to do this alone and if they do, I suggest blocking them from you're phone cause girl, it's impossible.</div>
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Embrace the mess. keep on keeping on and most importantly, scroll through the embarrassing photos of my messy side of medical momming. Feel free to save one of the images to your phone for the next time you think you are the only one that feels like you are a medical mom failure. You are not. You've got this! Now, go wash the formula out of your bra, get some sleep and kick the crap out of whatever elephant is in your way, one bite at a time!</div>
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Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com0tag:blogger.com,1999:blog-8089674908221332743.post-70823671606186950462019-03-17T15:41:00.000-04:002019-03-17T15:41:34.809-04:00Stop Letting your Child’s Milestones Make you Sad.<blockquote style="font-family: Helvetica;" type="cite">
Stop letting your child’s milestones make you sad. Your kids are growing. There are things you’re going to miss. You’ll miss their tiny toes and the way they let you hug them in public. You’ll miss picking out their outfits and the way they said “tickledy” instead of "that tickles". I get it, I do but I also see the other side. You see, I live in a community where moms don’t get all of that or any of that....They don’t get first words and first bites. First holidays aren’t always spent passing their baby around while they beam with pride and joy. Sometimes, there are no words at all and first holidays are spent in hospital rooms. Sometimes, first days of school look different and sleepless nights don’t end.<br />
In this world we celebrate milestones and next steps because we didn’t know we were going to get them and some of us never did.<br />
So, momma don’t let them growing make you sad. Let it be a reminder that life is short and full of new phases. </blockquote>
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They are growing up and that is awesome. It’s worth celebrating. So, stop putting sad faces on your Facebook statuses and pictures of birthdays and graduations. You are given a gift. A gift that another mother desperately wishes she had. Some mom’s spend their child’s birthday in a grave yard and long that life would have went on much differently.<br />
I know it’s hard to see them grow but I also know if we looked at them growing as a gift, it wouldn’t be sad. It would be a celebration!</blockquote>
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Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com0tag:blogger.com,1999:blog-8089674908221332743.post-70052238980659714942019-03-10T12:41:00.000-04:002019-03-10T12:42:51.828-04:00Childhood Chronic Illness Does Not Discriminate.<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Childhood chronic illness does not discriminate. If you have ever walked the halls of any Children's hospital, you have seen this. It doesn't matter your race, religion, background or social status. Chronic illness doesn't care. It comes for you and leaves no one in your family untouched. This, of course is the same for adults, I just happen to be the mother of an 8 year old with a chronic intestinal disorder along with a slew of other illnesses and congenital defects. He was born chronic and is growing up chronic. For us, the reality that we are all in this together despite our differences started while Case was still in my womb. I can vividly remember the faces of other women in the high risk waiting room at a speciality Women's hospital 2 hours from home. Their faces were worn and eyes sad but hopeful. I listened as a mother pleaded with the medical team to let her continue the rest of her pregnancy in peace with out all the high risk interventions now that they know this baby was healthy unlike her first with a sever bran anomaly. I watched a couple sob, the woman (visibly pregnant) was in a wheelchair and the man was on his knees leaning into her as they learned their baby would never see outside of her womb. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">When I think back to those crazy days I don't remember much. Most of it was a blur but I do remember their faces and feeling just a bit of their pain like a sharp knife in my heart and tightness in my stomach. I don't know how old they were, what kind of car they drive, if they pray before they eat a meal, go to confession each week or celebrate Hanukkah.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">None of that ever mattered before but more than ever it doesn't matter now. Above all we were moms. Moms that painted a completely different idea of motherhood in our heads than what was unfolding before us. We share the same hope and fears as we travel this narrow road together. Some of us are lucky enough to be able to order Chiplote deliver to the hospital lobby while others eat the free sack lunch the hospital provides at the welcome desk and some of us have done both. Bologna never tastes as good as it does when it allows you to stay at your child's bedside AND pay <i>most </i>of your bills.</span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Childhood chronic illness does not discriminate. As mothers of children with chronic illness we need to lean into each other, we need to look out for and protect each other like a pack of lionesses, <i>together</i> protecting their cubs regardless of our differences.</span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">We are a community of diverse women loving each other, caring for each other and understanding each other's pain like no one else. A community that with out our one common tie, a chronic child would never have met. We belong to each other and for some of us, we are the only support we've got. </span></div>
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Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com0tag:blogger.com,1999:blog-8089674908221332743.post-71166975850614157572019-02-16T06:45:00.000-05:002019-02-16T06:45:01.034-05:00At Least it isn't Sepsis."At least it isn't Sepsis" I whispered to myself a half a dozen times this week when life wasn't going "as planed" and inconveniences popped up at almost every corner. It was one of those weeks where one annoying thing after another happened. A flat tire on Valentines day, A broken heater in the dead of winter, the dash of the car that's not in the garage lighting up like a Christmas tree just to name a few. 15 years ago when we were low on funds and even lower on life experience this week alone would be enough to send us to push us over the edge. Then life happened. We saw real chaos and heart break. We handed our son over for dozens of invasive surgeries including a full scull repair, multiple abdominal surgeries and even surgeries that days afterwards failed, split right at the seems. We've sat bedside during painful intestinal folding and even blockages that wreaked havoc on his gut and took months to heal. We've handed his unresponsive little body over to the anesthesiologist later to find out his tiny body went into hypoglycemic shock and cause him to go into an unresponsive state. Then, there was Sepsis. Infection raged through his blood like a swarm of angry bees protecting their honey. With in 10 hours of the first symptom, he was unresponsive, heart rate soaring into the 200s and an uncontrollable fever. He was sick. As Dan and I stood still the room filled with busyness. Drs. from all floors came in to assess him. Several nurses blousing fluids, checking his monitors and administering medicines to keep him alive. The hardest part of that terrifying night is he couldn't say "I love you and daddy too". He always includes both parents when he says "I love you too" but that night he couldn't say anything.....That's when life felt more fragile than even and nothing else mattered. That's sepsis. That's a certain kind of hell I wish no one ever had to experience.<br />
The truth is, we all have our "sepsis". We've all fought impossible battles. We've fought our demons. We've seen heart break and have been in a place where time stood still and we weren't sure it would ever start moving again. We all fight hard battles. Sepsis just happens to be the most recent fresh hell that knocked us over and left us scared. When life starts to get hard and it feels like one inconvenience after another keeps popping up, remember your sepsis. Throw your brain back into a positive state and get shit done. Getting stuck on flat tires and broken furnaces isn't going to help anything and it's not going to be your last flat tire or broken furnace. So put your big girl panties on, call a friend to complain than remind yourself, "At least is isn't sepsis" because you, you can do hard things!<br />
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<br />Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com0tag:blogger.com,1999:blog-8089674908221332743.post-49048102199464495422019-01-16T14:16:00.002-05:002022-01-11T08:49:12.565-05:00When Happiness is Hard.I have a confession to make...sometimes it's hard to be happy. Right now, actually I'm in a place where happiness isn't coming easily. Honestly, it's embarrassing to write. I should be so full of joy. With a great job, four beautiful kids, a hard working, loving husband and a roof over my head why wouldn't I be happy? Is it that I' ungrateful? No. It's not that.. Is it that I'm depressed. Nope, depression is dark and debilitating and awful and this is just a nagging blah that I wake up in the morning with some days. Don't get me wrong, I find happiness. Happiness is Lainey holding my hand at the end of the day telling me a funny story about school. Happiness is kissing Case's freshly washed face goodnight after he's fallen asleep. Happiness is watching my two oldest help each other navigate Jr. high drama, academics and life in general. Happiness is all around me but sometimes I have to look harder to find it. Sometimes I have to be intentional about being happy. Seriously. In this crazy world where my days consist of phone calls, medicine drawing, appointment making, traveling to specialists, managing the pain and nausea of my 8 year old with chronic illness and all of the "normal" tasks of a working wife and mom, happiness sometimes escapes me. When I find myself in a place of sadness and blah I have two choices: eat a sleeve (or entire package) of Oreos and take a nap that is so long it makes my head hurt and gives me a groggy feeling OR find the happy. I'm slightly ashamed to say that I spent years making the first choice and would wake up n a worse state than hours prior to my binge eating and hibernation. This was easy, this made all the sadness go away for a couple hours but then it came back with a vengeance. Choice number two takes dedication and energy and is still a work in progress. <br />
When you have a sick kid the whole world give you a sad pass. It's like, "Well, those cards you were dealt kind of suck so we don't expect you to be joyful, just be sad. We won't judge you." Here is the problem with that theory, we (the moms of kids with Autism, Intestinal failure, Down syndrome, and so on) are the ONLY ONES IN CHARGE OF OUR HAPPINESS. Let me say that again for the people in the back, YOU ARE IN CONTROL OF YOUR HAPPINESS. This is forever guys. This isn't a "this too shall pass" kind of thing or "only for a season" situation, this is a "my child was born with birth defects, chronic illness, special needs and I can't change that" situation. What can we change? Our attitudes, our outlook, our decision to commit to finding joy on the heavy and hard days. It's hard, it's so hard and I know that some days I'll choose a fat nap over a perspective adjustment and that's okay. Perfection isn't my goal, peace is and if I can do it.... the lady that just told you she eats till she's sick and sleeps till spring then you can to! We are in this together. We are members of the same pack. Roar on momma lions, roar on!<br />
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<br />Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com0tag:blogger.com,1999:blog-8089674908221332743.post-29484237236330821092019-01-07T14:48:00.000-05:002019-01-07T15:56:26.931-05:00My Weight Loss Journey.You read the title and if you're anything like me you thought, "Oh, here we go....ANOTHER weight loss story. She's probably going to try to sell me something or even worse tell me how she gave up carbs, protein, fast food and showers then BOOM lost 50 pounds". Seriously, that's where my mind would go and I'm not goin to do either of those. I'm not going to go into my past or my childhood relationship with food and tell you that my my overeating and love for all things sweet started in Kindergarten because it didn't. I was naturally thin until I started having kids honestly. During my my pregnancies I gained 40, 50, and 60+ pounds. Sometimes, I held onto half the weight of the pregnancy before and then would gain some. After Case (our fourth and last baby) It was a roller coaster of losses and gains, Simple stresses like on-going insurance issues, prolonged hospital stays and DMES that never kept their promises would cause stress eating. The big, scary stuff like full scull surgery and $7,000 bills out of no where would cause the absence of hunger and weight loss. Once I got comfortable in the uncomfortable, I'd start eating and with a vengeance. Eating made me feel better. So, when all heck broke lose, I'd hide in my bedroom with a pint of Ben and Jerry like a scene from Bridget's Diaries.<br />
Food and naps made everything feel manageable till it wasn't anymore. In June of 2018, we got home from our annual beach vacation and I was the heaviest I'd been in 10 years. I was tired all of the time and had unmanageable headaches. In the past, I'd buy the magic vitamins and a gym membership and try for about a month till the newness worse off then I'd be right back where I was, overweight, overly exhausted and disgusted with how I looked. This time tough, I did something different. This time I thought, "What if I'm true to myself, just this once and follow this through?" I needed a plan. Not a plan that restricted me, that cut out whole food groups or a "magic plan" that promised quick results if I just drink tea and stand on my head for 10 minutes a day. This time, I needed to start living a HEALTHY lifestyle. With little to no thought, I joined Weight Watchers. I signed up for three months of the app knowing that spending a little money was enough to keep me on board for at least three months. I tracked my food, drank lots of water, joined WW support groups on Facebook and eventually started exercising. I learned a lot. I realized that every time I was stressed I reached for the donuts and cookies. I stoped Coke cold turkey because frankly, I didn't want to "drink my calories". I replaced old habits of stress eating during admissions with walking, writing or breathing. I still allowed myself sweets in moderation, I just tracked them on my app! in 5 months I lost 30 pounds, my headaches decreases and my energy increased. What I didn't expect along this journey was that while I was gaining a healthier body, I'd also gain a healthier relationship with my body. If you have kids then you know they change your body completely! Not only was I overweight but I was unhappy in my own skin. For me, self care started from the inside out. Once I was healthy on the inside I started getting excited about clothes, a new hair cut and makeup again! I am finally comfortable in my own skin AND I eat the occasional donut! I needed a plan and motivation to stick with it. WW Worked for me and is still working for me. I'm 7 months in and maintaining my 30 pound weight loss. I eat carbs and fats. I enjoy nights out at restaurants and pizza nights in. WW taught me to have a diet high in protein low in fat and FULL of fruits and vegetables. It taught me to stop mindlessly eating sweets but to save them for treats and really enjoy them! It taught me that everybody's healthy weight looks and feels differently, Guys, it's hard. I'm not in my twenties anymore and can't eat french fries like they are going out of style.... I have to take care of me so I am the best version of myself showing up for everyone else! Self care is so important and doing the best for your body is a really great place to start! If you want to learn more about WW or would like to join, message me or click the link below! You are important and if losing weight is important to you, make time for it. Make it a priority. Through hospital stays and sleepless nights I decided that I was worth it. I put the oxygen mask on first and made me a part of my priority list no mater how hard it got! You can too!<br />
<a href="https://www.weightwatchers.com/us/checkout/iaf/?iaftoken=ECD108C700">Click here to join!</a><br />
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<br />Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com0tag:blogger.com,1999:blog-8089674908221332743.post-80526675254907512842018-12-30T15:52:00.000-05:002018-12-30T16:00:44.426-05:00"These are a Few of My Favorite Things."<br />
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In honor of the amazing holiday season that is slipping by us so quickly, I’m going to list out a few of my favorite things! The things that help me keep my head above water, help me stay healthy and save me sacred, sacred time! As a mom, career woman, caregiver, mock nurse to our youngest with many medical complications and the crazy lady in charge of keeping all of this afloat, I need help. I need energy. I needed to find resources to help because, like most every mom, I can not do this alone! </div>
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So, without further ado and in no particular order, here are 10 of my favorite things. My time saving, self caring, mom friendly, favorite things!</div>
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<li>WalMart Grocery Pick Up. Seriously guys, this is a GAME CHANGER! If it’s available in your area and you aren’t using it, start. Now. Close this blog and make your grocery order! An easier life is just a few clicks away....</li>
<li>Amazon Subscribe and Save. Truth: I haven’t bought toilet paper from the store in over a year! I get my paper products, trash bags, laundry detergent, several of Case’s necessities and more shipped right to my door on whatever schedule I choose. The best part? When your child has Medicaid, you get a discounted Prime membership! Those guys and gals at Amazon know we need all the help we can get!</li>
<li>A 40 oz or larger water thermal water bottle. I got one at Walmart for about $15 bucks. It helps me track and regulate my water intake. I drink half my weight in ounces of water everyday day. It cuts back on headaches, helps keep me energized and has all kinds of health benefits! So, drink up!</li>
<li>A good journal. My favorite is the Start Today journal by Rachel Hollis but any journal will do! I jot down what I am thankful for, quotes, prayers and dreams. Journaling at the end of each day helps keep the heaviness that sometimes comes with this journey off of my heart and mind. </li>
<li>A good planner! It took me awhile to find one I love but my favorite is a simple, thin, go anywhere “Planner” by Rae Dunn. The month squares are big and there’s not a lot else in there, which I like. Thin and simple.</li>
<li>My TOMs slippers. Really, these are the BEST slippers! They have a sole and fit nicely in my hospital bag. I've spent countless hours pacing the Children's Hospital halls in these babies and plan to wear them until they fall apart.....</li>
<li>Chapstick and at least 7 tubes of it. I love all chopsticks and usually just go for th cheapest tube. I have one on my desk at work, one in my car, one on my night stand, one in my purse, one in my work bag and....you get the idea. I really hate chapped lips.</li>
<li>Dry shampoo. I uses so much dry shampoo I fear my hair will snap off and fall to the ground one day....My favorite is, Batiste. It is light, has a good scent and hides the fact that I haven't washed my hair in 6ish days super well!</li>
<li>A Ninja Coffee machine! This was an investment of sorts....I got it on sale a few years ago and never looked bak! You can make a whole pot, half pot AND it has a setting for a single cup.</li>
<li>My reminders on my phone! I know...LAME but, I would be lost without my reminder app! I set up a grocery list on there, a todo list and even a menu list for the whole week! If you have an iPhone and aren't taking advantage of your reminders, do so! You will thank me later!!!</li>
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<span style="font-family: "helvetica";"><span style="font-size: 12px;">Life is so busy! So crazy! So hectic! Take some time for YOU today. Even if it's just five minutes....Live a life you enjoy, one day at a time.</span></span></div>
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Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com1tag:blogger.com,1999:blog-8089674908221332743.post-6748775379727418122018-12-06T18:51:00.000-05:002018-12-06T18:51:05.083-05:00Dear December.<span style="font-family: Helvetica; font-size: 12px;">Oh, December I have a love-hate relationship with you. I love you because you’re December! </span><br />
<span style="font-family: Helvetica; font-size: 12px;">You sprinkle beautiful, white bliss all over the dread grass and bare trees. You bring comfort and joy! You host the holiday that I’ve loved since I was a child and love even more as a mother! You are beautiful and giving. You’re full of cookies and eggnog and all of my favorite foods. I LOVE that about you.</span><br style="font-family: Helvetica; font-size: 12px;" /><span style="font-family: Helvetica; font-size: 12px;">But....I struggle with you. Every year, I struggle with you. You bring sadness and painful memories. You remind me of everything that was almost taken away from me. You remind me of how close I was to losing my son. You host memories of unbearable news and long, heart wrenching sonograms. You are the month that held the words, “prepare to </span><span style="font-size: x-small;">bury</span><span style="font-family: Helvetica;"><span style="font-size: 12px;"> your child” and, “your baby’s body is broken. He just wasn’t wired right”. You hold lies. You remind me every year of the scary 24 hours before you marked our son's December 21st birthday. The 24 hours of breath holding, non-stress testing and more sonograms. You hold the dark and scary, (8 years later) gut wrenching memory of his tiny heart dropping to 24 beats a minute. You bring hot tears. Every year you bring hot tears. Just when I think I’m losing it, I remember, it’s December and I'm not going crazy. </span></span><br />
<span style="font-family: Helvetica;"><span style="font-size: 12px;">It’s not your fault and you’re not all bad. You are the month God decided to let us keep our son. Our 2 pound 13 ounce full term son. You are the month that started this journey. The good, the bad and the beautiful. You are hard for me and last year, you almost broke me. Last year, you were the month that held painful gut wrecking intestinal contractions and almost a full month of hospital admissions. You brought back fear and IV nutrition but you showed me once again how strong we can be when strong is the only option.</span></span><br style="font-family: Helvetica; font-size: 12px;" /><span style="font-family: Helvetica; font-size: 12px;">December, you are the hardest month of the year but I still love you.</span><br />
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<span style="font-family: Helvetica; font-size: 12px;"><br /></span>Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com0tag:blogger.com,1999:blog-8089674908221332743.post-43045817455245058762018-11-29T17:54:00.000-05:002018-11-29T17:54:50.269-05:00Guys! I used to be terrible at this....<span style="font-family: "helvetica"; font-size: 12px;">Guys....I used to be TERRIBLE at this. Now, I’m just not great at it. Living in the moment. It sounds easy enough but really, it takes conscious effort to enjoy the good life gives you while NOT dreading what feels like the inevitable. Whether it’s another hospital admission, a decline in my son’s health or a new, scary diagnosis. It’s a mix of fear and anxiety. It’s total lack of control. It’s a lot of things but what living in fear of the future really is, is giving into the thief of living joyfully in the moment. Whether the fear is loud and noticeable or a consistent white nose playing in your brain, it’s toxic. Honestly, it took me years to even realize this is what I was doing. I knew I was worried all of the time. When my phone would buzz with a text form whoever was caring for my son or Case felt even slightly hot I started planning a hospital stay in my brain. I’ve planned hundreds of these that never even happened. This isn’t something I’m proud or even like talking about. It is, however an important topic to bring into the light and to stop feeding in the darkness.</span><br />
<span style="font-family: "helvetica"; font-size: 12px;">I’m getting better at living in the moment, not near where I’d like to be but better.</span><br />
<span style="font-family: "helvetica"; font-size: 12px;">You see, when our son was born sick almost 8 years ago it opened my eyes to an unprotected world. A world where mommy’s kisses and daddy’s hugs don’t make everything all better. A world where big, beautiful, and slightly terrifying hospitals just for Children don’t only exist, they save and maintain lives daily.</span><br />
<span style="font-family: "helvetica"; font-size: 12px;">Seeing life get flipped upside down not just for your family but for the hundreds you meet on this journey is daunting. It makes you question your faith while clinging to it like it’s all you have left. Sometimes, it trickles down into other areas of your life. Areas you used to think were always going to be okay and now you’re web mding your 9 year old's symptoms and are convinced here basic leg pain is some, crazy, incurable disease. Your world used to feel safe and protected. You used to think that praying enough, or hoping enough, or loving enough would take the bad away. False. Although, I do believe in miracles I believe they look different now. Miracle don’t look like complete healing and a comfortable life anymore. Miracles look like a newborn baby crying when you expected silence. Miracles are shaky walking when you thought crawling was all you’d ever see. Miracles are holding it all together when it feels like it's all going to fall apart. Miracles, are believing you have the BEST life when the world from the outside is just waiting for you to fall flat on the ground and not get back up. This life, this crazy, hard, amazing, chaotic life is indeed a miracle in itself.</span><br />
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<span style="font-family: "helvetica"; font-size: 12px;"><br /></span>Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com0tag:blogger.com,1999:blog-8089674908221332743.post-15263368583562540642018-11-21T15:58:00.000-05:002018-11-21T16:01:37.074-05:00The Holly Jolly Holiday Headache (and 10 tricks and tips to help you avoid it).The holidays are CRAZY. Add kids, they get crazier, add a child with any kid of extra needs or medical complications and they sometimes can feel unbearable....The holidays are supposed to be fun, the happiest time of the year and I know for me, they can get stressful. I have often let worry and anxiety steal all of the beauty and joy the holidays hold.<br />
As mom's and dad's of special, medical kiddos, we need to take that joy back! I see some of you and you are SO good at that! You are usually just so happy to be out of the hospital for another holiday that nothing else matters and you do what works best for YOUR family. You enjoy the holidays because you've been doing them long enough to know what works and what doesn't. You've started some new traditions and maybe don't force some of the old ones because they don't jive well with your new normal.<br />
Guys, if you haven't already, it's time to TAKE THE HOLIDAYS BACK! Here are ten tips, tricks and hacks that have helped me reduce stress and keep the JOLLY in the Holidays!<br />
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1. Have fun with what you've got! Draw a turkey on your child's feeding bag, put a Mickey Button in a pumpkin or make the Elves tube fed too! After all, feeding tubes, trachs and other medical equipment have helped keep our kids ALIVE they are as much a part of them as our right arm is a part of us.:)<br />
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2. Enjoy the EXTRAS that are offered to you by your community. Sensory Santa, Early Intervention Christmas parties, a less hectic Trunk or Treat.....and more! Those little gems are out there, sometimes you just have to look a little harder to find them.<br />
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3. Do what works best for your little family and pray your extended family understands.;) If going out is hard, invite people in. If going out for two hours is what works, do that. Know that at the end of the day, keeping it simple is going to be the least stressful option.<br />
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4. Make your own traditions and stick to the ones that matter to you. For our family, a real tree is really important. So even when December gets crazy and we forget to water it for weeks at a time, we enjoy that tree until all the pine needles fall off!<br />
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5. Take time for you, momma! Rest when you can, drink your water and remind your self that you are enough! You are rocking these holidays even if all you did was drink a glass of egg nog and hang some stockings.<br />
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6. Ask for help. Ask for help. Ask for help. Did you get that? All joking aside, your friends and Family might not know how to help you. Making a list is a good way to let people know what you need. Whether it's someone to sit with your little one for an hour while you wrap gifts or to bring you a few Christmas cookies. Every little bit of help counts. :)<br />
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7. Set time aside for your other kids. If it's while the in home nurse is there or while your partner can help you out, take a walk, grab some lunch or just chill for a bit with your other children. They may not tell you but they can feel the stress sometimes too.<br />
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8. Stop expecting the sun, moon and stars from yourself! It's okay if you can't make 60 dozen Christmas cookies, voulenstier at every school holiday party and still keep your house clean and smelling like holiday cheer! Seriously, do what you can and let go of what you can't.<br />
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9. Talk with your family. I was mostly joking in #3 when I said to do what you can and pray that your family understands...Talk to them. Let them know that you need to "modify the holidays" a little to fit in with your new normal.<br />
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10. Remember what the holidays are for YOU. Whether it's the food, the traditions, the midnight mass or enjoying time with the ones you love, don't forget what you and your family love most about this time of year and soak up every minute possible!!!!<br />
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HAPPY HEADACHE-LESS HOLIDAYS!<br />
Love, Liz<br />
A Very Special Case's mom.<br />
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<br />Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com0tag:blogger.com,1999:blog-8089674908221332743.post-6673196461746579332018-11-11T10:41:00.000-05:002018-11-11T10:41:05.483-05:00Pantry Stocking Stuffer!Here is is! Christmas 2018 give back project is ready to roll!<br />
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Visit visit the event page for more info! https://www.facebook.com/events/308791043060575/<br />
<br />Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com0tag:blogger.com,1999:blog-8089674908221332743.post-40566113401642085042018-11-09T09:19:00.000-05:002018-11-13T14:21:07.518-05:00Primarily Custodial.<div style="font-family: helvetica; font-size: 12px;">
<span style="background-color: white;">Taking care of a child with complex medical needs is the hardest thing I've ever done. By hard, I don't mean impossible or miserable just hard. Our son Case is seven years old and has a list of medical needs longer than my arm and it would take an entire blog to list them all but lately, his biggest battle is a severe intestinal disorder. He is feeding tube and IV nutrition dependent. As parents, Dan and I don't just care for him medically, we order meds, make sure supplies come on time, go to IEPs and therapies, visit specialist after specialist after specialist. We've watched him endure so many invasive medical procedures my stomach turns when I allow myself to really think about it. That's just the short list of what medical mom's and dad's endure. One of the most frustrating battles we have had to fight is the dreaded insurance battle....</span><br />
<span style="background-color: white;">Within the past few months, our son’s primary insurance (the one we pay for, not the one through the state) started. </span></div>
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<span style="background-color: white;">I got a call one morning from a young, wide eyed, Special Needs insurance rep concerning coverage of my son’s private duty nursing. The call started like any other, Mr. Insurance Rep: “Hello. This is Mr. Insurance Rep from insurance X calling with some import information. Am I speaking to the parent or guardian of Case McNulty?”</span></div>
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<span style="background-color: white;">Me: “Hi. Yes, this is his mother”</span></div>
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<span style="background-color: white;"><span style="background-color: white;"><span style="background-color: white;">Mr. Insurance Rep: “Hello Mrs. McNulty, fancy words, etc. etc. We reviewed the request for private duty nursing for Case. The nursing didn’t meet clinical blah, blah, insurance words, etc. So, we sent the request to the Medical Director.....more fancy insurance words.....” and then he said it. The statement of the century. The sentence that was like a hard blow to the gut while somebody ripped the rug out from underneath my feet.”Your son’s private duty nursing is being denied due to the fact that his care is....wait for it....PRIMARILY CUSTODIAL.” He said it. My son doesn’t deserve nursing care or at least they weren’t paying for it because his health care needs are mine and his dad’s job. That’s all those fancy words in Lehman’s terms. I was seriously caught off guard. I’ve heard so many reason’s insurance denied the medicine, nursing care and EVEN inpatient stays (after they happened) that I could recite them in my sleep. Phrases like, "not medically necessary", "does not meet the plan's criteria", and more but "primarily custodial"....that was knew. I knew what he meant but, I wanted him to explain it to me human to human, company to consumer. So, I asked him, “what EXACTLY does ‘primarily custodial’ mean"? He rambled off fancy words in such an eloquent fashion that if I weren’t still laying on the floor with a sore gut and the rug beside me, I may have bought what he was trying to sell me. I'll translate, Dan and I can be taught Case’s gtube, central line, TPN, medicines, injection, etc. and just do it. 24 hours a day, 7 days a week, we can just do it. We don’t need nurses to do what, according to insurance X is our job. “Well”, I replied “You are correct. We CAN care for our son. We know his care and can provide it BUT, what you are really saying is that 24 hours a day, 7 days a week, we are to care for our son. One of us should quit our job, lose out on sleep, not have anytime alone with his siblings, barely pay our bills and solely care for our son.” I didn’t stop there because they obviously did expect us to solely care for Case in all of his medical complexity with zero nursing help. After all, he’s our kid and our responsibility. I agree with the fact that we should know his care and be able to care for all of his needs with out help. We do and we can BUT (and that’s a big but) should we have to? I’m not going to argue politics or get into the details of the mess that is insurance or pick apart our broken health care system because god knows I don’t have endless time and energy to debate those touchy topics. I did however, continue my conversation with Mr. Insurance Rep for just a few minutes longer. I went on to ask him if he truly thought Case’s care, every last ethanol lock to his central line and water flush to his gtube is truly and without a doubt something he (in his heart of hearts, fancy insurance mumble jumble aside) was primarily custodial. He said “no”. He doesn’t believe that we should turn our worlds more upside down than they already are to care for Case with no help and further </span><span style="background-color: white;"><span style="background-color: white;">more, when he clocked out of work that day to go home, have dinner and lay his head down to sleep, I hope Case<span style="background-color: white;"> entered </span></span></span><span style="background-color: white;"><span style="background-color: white;">his</span> mind. I h</span><span style="background-color: white;">ope he remembered me and the flushes, the vomit catching, the central line monitoring and on and on because, well, we can not do this alone. At least not without copious amounts of alcohol and mood stabilizers. We can’t do this without his amazing, dedicated and hard working nurses that stay awake all hours of the night to meet his needs so his dad and I can sleep. Or The dedicated, professional, tireless nurses that care for him while we work and go with him to school so he, just like any other 7 year old boy can experience real life and second grade! We need a village to care for our little boy and home health nurses take up most of that village!</span></span></span></div>
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<span style="background-color: white;">I feel compelled to tell you that I told Mr. Insurance Rep that he was kind and good. I appreciated him truly listening to me and that I don’t think this is his fault. By no means was I trying to kill the messenger nor do I think one phone call one conversation with Mr. Insurance Rep is going to change the world. However, I think it’s vitally important that awareness be raised and home nurses get appropriate wages. It's important to lobby in Harrisburg, talk to your State Representatives, be aware of the broken system and the fact that even though Medicaid in our state usually pays for in home and at school nursing, it’s not nearly enough money. There is a nursing shortage and many parents do have to quit their jobs and lose sleep so the child gets the care they need. </span></div>
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<span style="background-color: white;"><span style="background-color: white;">Our medically complex children need more that us, they need a village</span>.</span><br />
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Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com0tag:blogger.com,1999:blog-8089674908221332743.post-62123716735754455882018-10-28T11:48:00.000-04:002018-10-28T12:15:45.723-04:00VLOG!! Blessing vs. Burden.Blessing vs. Burdens.<br />
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Click the link below to watch my thoughts on CHOOSING to see the hard as a blessing not a burden!<br />
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https://www.youtube.com/watch?v=BnlRyw8Ntyc&feature=youtu.beLiz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com0tag:blogger.com,1999:blog-8089674908221332743.post-11889165187633837022018-10-21T20:20:00.001-04:002018-10-21T20:20:37.344-04:00Pantry Stocking Stuffers!!!! (Announcing the 2018 Give Back Project)Guys....are you ready for it?!<br />
Each year Case for Case's birthday (December 21at) and Christmas we try to do a great big "give back" project for the Children's Hospital of Pittsburgh. We team with Rooting for Ramsey and have collected everything from toys to ornaments. This year we are collecting non perishable foods for the family pantries!<br />
Each unit has a little kitchen with cupped that are often scarce. There is such a need for quick and easy snacks that will fill families up when they are low on time and or money.<br />
We will be collecting food from now until December 21st!<br />
We will be providing a list of food, an address to send the food to and flyer to share with your friends and family!<br />
Thank you for always supporting Case and for helping us give back to the hospital that gives us continual hope!<br />
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<br />Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com0tag:blogger.com,1999:blog-8089674908221332743.post-67808077039149033382018-10-14T18:48:00.000-04:002018-10-15T21:25:35.407-04:00I’m Sorry. Sometimes, we are stuck in situations we can’t control. Sometimes, the ONLY thing we CAN control is our attitude. Sometimes, those situations are so sucky that the world gives us PERMISSION to feel sorry for ourselves and we do. I do. I was sitting by my son’s hospital bed during admission number 4 million and was throwing a little pity party for myself....It was Friday. My son was admitted the night before and we were looking at about a week behind these four walls. We had plans for the weekend. Plans to get away for for a few hours, my husband and I. We were going to spend time together, eat our favorite food and celebrate his birthday. All these plans changed quickly and were replaced with needles, IV fluids and hospital gowns. So, I did what I normally do and pouted a bit. I thought, “of course this happened! We had something planned and every time I plan something fun for myself, it doesn’t go like I imagined” and on and on my pity part went. In the thick of my internal whine fest I heard a small and quiet voice, “Someone is longing for the very thing you are upset about right now.” At first I thought that was crazy! Who would be wishing to be in the hospital with their child? Then it hit me! The faces of all the mommas I know would want to be here went though my mind. The mommas that don’t have their babies to cuddle any more. The mommas that are in the ICU by there intubated, sedated baby wishing they were in MY spot.<br />
This is a community. A community of medical mommas that have laughed together, celebrated together and cried together. I’ve walked past little caskets with race cars and tiaras and my heart aches for what is gone. It’s those moms that would give anything to be here on a regular hospital floor drinking a Starbucks with a discharge date in mind. There is ALWAYS and I mean ALWAYS SOMETHING to be grateful for! So, to the momma that is in the icu <span style="background-color: white;">or the</span> momma with empty arms, I’m sorry. I’m sorry that I was complaining. I’m so, so sorry I took the life I’m living for granted. I’ll put my big girl panties on and know that I, in this hospital, by this bed am blessed. And I will say a prayer for you tonight.<span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);">❤️</span><br />
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<img src="blob:https://www.blogger.com/75575498-914d-44f9-942e-b2e8e6cf7a93" />Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com2tag:blogger.com,1999:blog-8089674908221332743.post-83879095182454038332018-10-07T20:23:00.000-04:002018-10-07T20:31:00.177-04:00Self Care and Why it's So Important<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "helvetica";"><span style="font-size: 12px;">Let’s talk about self care. If you are anything like I used to be, that very combo of those two words in that order make you want to throw up on your shoes. You are probably thinking, “Are you kidding me? She wants me to take care of myself? When??? How?? Does she really think I have the ability (time, money, energy) to do anything above the required semi-weekly shower and pee when my bladder is about to explode. Cause I don’t. I can’t take care of me because I need to take care of everyone else! Including (for a lot of us) a very needy, child with SO MANY extra needs!!” When I say, “I get it” I’m telling you the god, honest truth because I was there and still have off days. You see, for a LIVING I tell other parents to take time for them. I run whole support groups on self care and why it’s so important. I’ve been doing this for years....All the while I was so </span></span>neglectful<span style="font-family: "helvetica";"><span style="font-size: 12px;"> of my own needs that I ate donuts like they were going out of style, would get so tired I’d fall asleep on my living room floor as soon as I did the required after work, work. I had headaches every, single day. A day without a headache was like winning the lottery, it hardly ever happened. I was quickly gaining weight and just plane miserable but not many people outside of the </span></span>McNulty<span style="font-family: "helvetica";"><span style="font-size: 12px;"> house knew...</span></span>In fact<span style="font-family: "helvetica";"><span style="font-size: 12px;">, I was so good at hiding it that I actually got call perfect, “Super Woman” even! Now, this wasn’t one of those, “I don’t know how you do it all, you must be superwoman” kind of statements it was, “How will you ever know how hard this is for me (raising a complex child). You have it ALL together! I read your son’s </span></span>Facebook<span style="font-family: "helvetica";"><span style="font-size: 12px;"> page and you’re perfect! You’re basically super woman!” I was talking to another mom. A mom that was struggling. It hit me like a ton of bricks. It was heavy and hard to hear. She really thought I had it all together. She really thought I was some super human that could do it all eland was always okay. What didn’t she know? She didn’t know that I cried twice on my morning commute. She didn’t know how unhappy I was and how stressed out I felt. She didn’t know that I had stress induced mouth sores, headaches and chest pains. She didn’t know that when things got really hard instead of being in that hard place I’d eat donuts, cupcakes and candy bars to mask the overwhelming feeling that I just can’t do this anymore. She didn’t know any of that because all she saw were perfect looking pictures of me smiling while changing a dressing or walking Case back to surgery. She saw family pictures with perfect, happy faces she had no idea that I could scream so loud at my girls my throat would hurt and I’d eat another donut to mask the sinking feeling of failure.</span></span><br />
<span style="font-family: "helvetica"; font-size: 12px;">She believed I was perfect because that’s all she ever saw. I looked at her tired, worn eyes and told her I was sorry. Sorry that she really thought I wasn’t struggling and that she thought she shouldn’t be too.</span><br />
<span style="font-family: "helvetica";"><span style="font-size: 12px;">Guys, this is hard. So freaking hard! Raising a child with chronic illness is that hardest thing I’ve ever done. Pile onto of that raising his three sisters, working long days, being a wife and just, well life. I felt like I was drowning and caring for ME was the last thing on my </span></span>to do<span style="font-family: "helvetica";"><span style="font-size: 12px;"> list until June of this year. We went on our annual family beach trip 10 hours away with a car full of </span></span>TPN<span style="font-family: "helvetica";"><span style="font-size: 12px;">, equipment, pumps and more. I love, love the beach and being there with Dan’s extended family is like a little week of heaven on earth! But these past few years have been increasingly more complicated. IV fluids, dressing changes and keeping a </span></span>gtube<span style="font-family: "helvetica";"><span style="font-size: 12px;"> stoma from getting filled with sand are just on the short list of beach stressors.... What did I do to keep from going insane managing it all? I ate. I ate so much that week that I gained 10 pounds. I was miserable. Not because I don’t LOVE the beach and all the great people we get to be with but because I spent so much time stressing and not sleeping that I didn’t realize how little I was caring for myself....When we got home I knew I needed to put taking care of myself on my own </span></span>to do<span style="font-family: "helvetica";"><span style="font-size: 12px;"> list. So, I did!</span></span><br />
<span style="font-family: "helvetica"; font-size: 12px;">I started taking care of Me and not in the luxurious bubble bath and manicure way (well, sometimes) but in the “care for your emotional and physical health” way. I joined Weight Watchers, started working out at least 3xs a week and drank half my body weight in ounces a day. Not all at once but in about a two month period. I started listing to self help books and pod casts on my work drives. I STARTED ASKING FOR HELP (and anyone that knows me knows that's a hard one). I started caring about me. I started seeing a therapist, not because I’m weak (I used to think that if I sat on a couch and told somebody the ugly truth it would mean I wasn’t strong enough to do it alone) but because I was desperate for peace and tried every, possible avenue to get it. Holy Molly does it help! Sitting on that couch baring my soul to a complete stranger it one of the most helpful things I’ve EVER done! Just this past week I joined the #last90day challenge that focuses on ending 2018 stronger then we start 2019! The results focusing on mental and </span><span style="font-family: "helvetica";"><span style="font-size: 12px;">physical heath are LIFE ALTERING. DO I still have bad day? Yes. Do I still feel overwhelmed and angry sometime? Absolutely! But I am working on me and that MATTERS! I am putting the oxygen mask on first e=when this plane goes down so I have the right head about me hewn I'm taking care of others. You can do this too because you are important, we will help you because we are your village!</span></span><br />
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<br />Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com0tag:blogger.com,1999:blog-8089674908221332743.post-34312886241633787682018-09-30T08:29:00.000-04:002018-10-21T19:43:07.207-04:00We Still Need You.<span style="color: #454545; font-family: "helvetica"; font-size: 12px;">Guys, I still need you. We still need you. 7 years into this crazy journey I still don’t have my ducks in a row. Heck, I don’t even knew where half my ducks are let alone have them in a row...The truth is, when your child has a chronic illness or special needs of any kind, chaos follows you. It doesn’t end after a long admission or surgery number umpteenth. It’s always there, even on good days. When you parent a child who needs 24 hour care you tend to LOOK like you have it all together when in reality, you are like a swollen water balloon in a field of porcupines. Just take a moment to visualize that...a water balloon with arms and legs trying to navigate it's way through a treacherous field of horror. The moment it loses its balance or something goes wrong, it pops and then, it slowly picks all its piece up and tries to put itself back together. That’s me. That's all of us. The tired, the worn, the perfect looking, the crazy, the mom’s and dads of medical miracles. Most days, we are barely keeping our heads above water and all we really need is a casserole and a hug. Easy solution, right? We just need to ask a close friend or maybe a group of close friends to take take turns making dinner on scheduled Children’s Hospital days. Or, just ask someone to come to the house to help the girls get ready and on the in the mornings were admitted to Children’s. Just ask...It sounds easy but the reality is, I’ve been doing this for SEVEN almost eight years. I assume, most of us feel that we should have our ducks in a row by now. We should be able to do this, juggle that, work inside or outside of the home and raise our children all while raising one that will always be “sick”. He’ll always have extra needs and that’s okay. But, just because we’ve accepted the fact that life will never be what we dreamt it was doesn’t mean we should be too proud, too stubborn to admit, WE STILL NEED YOU and possibly always will. We need you to remember us when you’re planning a get together and invite us even though you know it will be hard for us to come. We still need you to check in on us, not just on the hard hospital days but the boring ones too. We still need you to bring casseroles on the hard days. Sometimes, we need you to tell us you are helping us because it’s hard to ask. All in all, we just need you. </span><br />
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Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com0tag:blogger.com,1999:blog-8089674908221332743.post-30250502866978911852018-01-07T11:27:00.001-05:002018-08-25T07:55:41.435-04:00Hello My Name Is. <span style="color: #454545; font-family: "uictfonttextstylebody"; font-size: 17px;">Hello my name is <i>warrior</i>. </span><br />
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I am fierce and strong. I fight battles I never dreamed I would have to fight. I am fearless even when I'm afraid and fight until the battle is won. I run on love, adrenaline and coffee. </div>
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When the day nears it’s end, I wipe the sweat off my brow, close my eyes and rest. For tomorrow, another battle may rise. </div>
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Hello my name is <i>Momma Bear.</i></div>
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My cub is my world. You mess with him, claws will come out. I do not walk around looking for a fight. I am content caring for my cub and spending my days as peacefully as possible. But....if you fight me, I will fight back. I will appeal and appeal and appeal when I know something he really needs is being denied. I will put my foot down and insist he gets the surgery, medication, nursing hours and respect he so very much deserves. I will roam the lands in search if the best doctors, insurance and treatment. </div>
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I'm not an angry momma bear but I will roar when I need to. </div>
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Until my last breath, I will tirelessly care for, fight for, and protect my cub. </div>
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Hello my name is <i>Dreamer</i>. </div>
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I will always dream of what my son will become. I dream of a world that accepts, understands and appreciates children and adults of all abilities. I dream of all he can be and am okay when not all of my dreams come true. Sometimes, my dreams for him change and that's okay. I will always be a dreamer, dreaming up the beautiful man he will be knowing that dreams change and nightmares exist. </div>
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Hello my name is <i>Overcomer</i>. </div>
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I prevail over all circumstances big and small. I've overcome anxiety and fear, looking it straight in the eye and telling it I don't have time for such thoughts. I have fought threw and over come long hospital stays, grim diagnoses, IEP meetings, surgery recoveries and surgery fails. From the minute I saw my baby, sick and frail I knew....I have been called to be an overcomer. </div>
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Hello my name is <i>Peaceful</i>. </div>
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Sometimes, shit hits the fan and I'm up to my neck in chaos. I sit and breath. At that moment, all I need is to breathe in and be at peace with the imperfect. I breathe again and and white knuckle every bit of peace around me. I nod my head and say, "I'm okay". I make peace with my circumstances. This is my new normal and although I fight battles daily, I will never fight the fact that my child was born perfectly imperfect. </div>
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Hello my name is <i>Mom</i>. </div>
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Above all else I am a mom. A mom like you, fighting for all my child deserves. Protecting him until my last breath. Dreaming of all he can and will become. Overcoming heartache, sleepless nights and worried filled days. A mom that has made peace with the life she was given. </div>
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<span class="Apple-style-span" style="font-size: 17px;">When you look at me, don't </span><span style="font-family: "helvetica"; font-size: 12px;">pity me because I am a special needs mom. Celebrate with me because I was given the most important job in the world! Even on the toughest days, wear your name proudly and warrior on sweet momma, warrior on. </span><br />
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Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com2tag:blogger.com,1999:blog-8089674908221332743.post-76368609815499490362017-03-19T10:41:00.001-04:002019-03-02T20:03:58.248-05:00It's Okay Not to be okay. <span style="color: rgb(69 , 69 , 69); font-family: "uictfonttextstylebody"; text-decoration: -webkit-letterpress;">It's okay not to be okay. </span><br />
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You: "How are you?"</div>
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Internal me: "I might burst into tears.... It's been a rough week and it's only Wednesday. I've caught vomit, stuck a needle into a port, tracked a fever, spilled meds, hooked up IV fluids, made 600 phone calls, worked till 5 each day, tried to cook diner and straighten the house. I've fallen asleep waiting for the night nurse to come when I know there is so much more to do.... All the while, I've tried desperately to make sure my three other children felt as loved and "normal" as possible... Do you really want to know how I'm doing? I mean....REALLY? Will you give me "advice"? Will you tell me how "strong" I am? Will you say, I don't know how you do it? OR will you just look at me with a blank stare because, really you thought I would just say..."I'm okay."?</div>
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I give you a smile and say, "Good. I'm good, you?"</div>
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Now that I'm 6 years deep into the crazy, beautiful, chaotic, blessed journey of raising a medically chronic child I've realized something... IT'S OKAY NOT TO BE OKAY all of the time.</div>
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A few months or so, a coworker asked how Case was. After rambling for five minutes about Intestinal dysfunction, appointments, vomit, Drs, and insurance I looked at up and said, "oh. I'm sorry. Should I have just said 'okay'?." The answer was, "No. I asked because I wanted to know". </div>
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The truth is, I'm not always "okay". I have days when I think I can conquer the world. Days where I go to bed thinking, "I've got this." Then there are days (more often than not) when I wonder if it's possible to die of exhaustion. I wonder if my girls are faring well. I wonder if I'll ever be completely "okay". </div>
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Somehow even when I'm not "okay" it's okay. This crazy, chaotic life is strewn with beautiful. </div>
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A beautiful husband who's always there at the end of the day to tell me "We've got this". A beautiful job that keeps me grounded and gives a a glimpse into lives just like mine, mom's that aren't always okay and you guessed it....that's OKAY! Four BEAUTIFUL children, one that was made perfectly imperfect and three that have grown into lovely young ladies that see how beautiful different can be. </div>
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The reality is, we aren't born strong. Strength comes on the journey. I wasn't hand picked to have a special needs child because I'm better than a mom of typical children....I don't know why God picked me to be the mother of this amazing boy but I know that somehow it will all work out and in the end, the only person that expects me to be perfect is me. </div>
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It's okay not to be okay.❤</div>
<img alt="" id="id_90dc_85f3_2c7a_a321" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6aRb3MML3kvn45Agto7kIQfRKegqU95CHDUKNxgi2SUI-Aqr41C43D9dpG5xNv6Jk3bv_pON0AiHTm2ITbmNE9397oF6E9Sumok7u_ehylWdruIVWeYy62332egQWz_2m7GuGOXpKGg/" style="height: auto; width: 353px;" title="" tooltip="" />Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com1tag:blogger.com,1999:blog-8089674908221332743.post-90102622604811353342016-11-07T18:57:00.000-05:002016-11-07T20:01:44.401-05:00"Love, you're not alone, cause I'm gonna stand by you."<span style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">Dear son,</span><br>
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5 years, 11 months and one day ago, they told me you would die. They told me were broken. I sat with your dad on the wrong side of the desk at the specialty OBGYN's office, hot tears falling down my face praying they were wrong. The words from that day are seared in my brain forever. They changed me. They made me stronger. They hit me like a hard punch to the gut taking my breath away. All along, I knew the words were coming. I knew you were sick but nothing prepared me for the words, "prepare for a burial". Nothing. </div>
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In a way, that fairytale idea I had with my previous pregnancies that everything would always be okay shattered like a piece of broken glass that can't be put back together. </div>
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Every year, around this time I feel it. I didn't even realize why I'd been acting so crazy the last couple days till "Stand by You" by Rachel Platten came on the radio and I cried like a baby. </div>
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Tomorrow, we head to a state 4 hours away looking for answers. I'll take take you, my almost 6 year old, very alive son for your 30 something anesthetic procedure and pray it's not in vein. </div>
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I'll hold the mask over your face until your eyes close and your body becomes limp. I'll kiss your head, whisper a prayer and wait. Maybe I'll wait another almost 6 years for answers, maybe a lifetime but through it all..."I'm going to stand by you. Even if I can't find heaven, I'll walk through hell with you." </div>
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Son, even on the darkest days, I'll always be by you. I'll fight for you. I'll believe in you. I'll never stop loving you. You have made me better. You've shown me a love I didn't know existed and a strength I didn't know I had. </div>
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Thank you,</div>
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Mom</div><div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;"><br></div><div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihGwKbrhY8OoLV8kg7OmRWhzi5UkCidAJt6PNkSG-9UvLRYevzw0x33V_BVV-yBKxq2-pNTtk0VyUXoxpLTO27PNUSbR5n73aMTfAcMh_cRTWmP6qLgAWy97vnaJyohrKM64KMiinrtw/s640/blogger-image-1565097377.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihGwKbrhY8OoLV8kg7OmRWhzi5UkCidAJt6PNkSG-9UvLRYevzw0x33V_BVV-yBKxq2-pNTtk0VyUXoxpLTO27PNUSbR5n73aMTfAcMh_cRTWmP6qLgAWy97vnaJyohrKM64KMiinrtw/s640/blogger-image-1565097377.jpg"></a></div><br></div>
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Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com0tag:blogger.com,1999:blog-8089674908221332743.post-30996144336138802232015-08-26T07:55:00.001-04:002015-08-26T07:59:16.352-04:00Feel Better Bag.<div>
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You know how you take your child to get a shot and promise an ice cone for afterwards? Something small and sweet to put a smile back on there little faces.<br />
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Well, when you have a chronically ill child with oral aversions and digestion issues, the ocational "ice cream" treat just doesn't cut it.....</div>
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You see, sometimes my son has multiple appointments weekly. We've been driving 4 hours round trip to Children's at least once a week plus the normal "well check", shots, etc. For the last 4 1/2 years, I'd promise him a gift from the hospital gift shop. So, now he owns everything under $10 in that gift shop..... half of it's broken, the other half deflated....</div>
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After a meltdown from a long day and an indecisive boy at the Children's hospital gift shop a week ago, his home health nurse suggested we fill a bag from the dollar store, put it in the back of the car and every time he has an appointment, etc., he picks a treat from the "feel better bag".</div>
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BOOOM!</div>
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The world is a happier place....or at least our drive home is more peaceful.❤️</div>
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AND......He had SO much fun making it!</div>
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Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com0tag:blogger.com,1999:blog-8089674908221332743.post-8406074293503908922015-08-16T21:53:00.002-04:002015-08-16T21:56:03.406-04:00Let Him Live.<div>
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Every year since my husband and I got married, we've traveled the 8+ hour trip to spend a week at our favorite beach with extended family. </div>
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We've done it with nursing babies, teething babies, potty training toddlers, motion sick preschoolers, a tube fed baby but never (not until this year) an IV dependent, medicine needing and tube fed 4 year old that wakes up multiple times a night sick and in pain. </div>
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When Case got his central line in January, I can honestly say I was hesitant taking this yearly trip. </div>
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When he then landed in the hospital 5 times in 5 months this year with infection, low platelets and various other problems, I was convinced we shouldn't go. </div>
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All we had to bring. Things I couldn't just pick up at Walmart if I forgot it.....The billions of bacteria I was sure we're just waiting to crawl in his line...All of it scared me and I'd consider myself one that isn't easily fearful. It would have "just been easier to skip the trip". </div>
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Then, during one of our April admissions I talked to one of my favorite Drs on his Intestinal Care team. Long story short, she said to "let him live". Told me all the precautions. He couldn't swim but he could splash once I cover the crap out of the line and dressing. </div>
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It was those words, "let him live" that hit a feeler deep in my heart. </div>
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Yes, we'd have to scope out the nearest hospital. Yes, there was a chance he'd wind up life flighted back to PA with infection, a broken line, etc., etc. (I thought of every worse case scenario). </div>
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Truth is, it would be easier to keep him home. Heck, it'd be easiest to make him a bubble boy! But we didn't. Not because we're irresponsible or selfish but because we need to "let him live." </div>
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In January of this year he was diagnosed with intestinal failure on top of his dozens of other diagnosis'....and the reality is, we don't know what tomorrow brings. </div>
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We hope to give him every opportunity possible to be a boy. To explore and enjoy life outside the four walls of the hospital. </div>
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Is it easy? Heck no. It's hard work! There are tubes and pumps. Puke and medication. </div>
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Just a day trip requires so many supplies and medicines, syringes and stops but this summer was the summer we "let him live."</div>
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From the beach to fishing and amusement parks, Case and our little family lived in the moment and were blessed to enjoy the summer together. </div>
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We're there hospital trips, a broken central line and other shenanigans? Yes. <span style="background-color: yellow;">Was </span>it because I was irresponsible and not careful, no. It's because this new life, this crazy journey is full of unknowns but those unknowns won't stop us from "letting him LIVE!" </div>
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Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com4tag:blogger.com,1999:blog-8089674908221332743.post-82047003462780393162015-08-09T21:16:00.001-04:002015-08-09T21:17:45.999-04:00Made for His glory.<span style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">"Babies are like computer programs. Lots of pieces put together to make one big picture. YOUR baby's programming is all wrong...."-one of my many, many OBGYNs during my very complicated pregnancy. </span><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">My baby was "made wrong"....sick inside of me. No mater how healthy I ate. No mater the fact that I didn't smoke, do drugs or drink, my baby was disabled. He was full of health problems and I prayed. I prayed he'd live. I prayed that if he didn't, I'd have the grace a peace to say goodbye and still exist....I prayed for healing. I prayed for peace in the storm but above all else, I prayed for God's perfect will to shine through the darkness. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Did I believe God could heal my baby completely? Yes. Did I pray for that? Sometimes but above all else I prayed my heart would stay thankful in ALL circumstances and that this tiny life inside me would bring God glory. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Fast forward 4 1/2 years. God didn't heal my child and that's okay. I'm at peace with that. Does my heart break a little with every surgery, every procedure, every time they put him under, blow IVs, hold him down? Yes but God can put that back together. He gives me strength along the journey. Sometimes, strength is my only choice. Do I think I'm not Christian enough? Not worthy of a heathy son? Not Godly enough? Do I think God punished me for not being "enough"? Absolutely not. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">My child....no...God's child was made perfectly imperfect and I'm okay with that. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">John 9:2-3</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><p class="chapter-1" style="box-sizing: border-box; margin: 0px 0px 10px; -webkit-font-smoothing: antialiased;"><span style="background-color: rgba(255, 255, 255, 0);"> <b>2.</b><span id="en-NIV-26443" class="text John-9-2" style="box-sizing: border-box; -webkit-font-smoothing: antialiased;">His disciples asked him, “Rabbi,<span class="crossreference" data-link="(<a href="#cen-NIV-26443A" title="See cross-reference A">A</a>)" data-cr="#cen-NIV-26443A" style="box-sizing: border-box; position: relative; vertical-align: top; top: 0px;"></span> who sinned,<span class="crossreference" data-link="(<a href="#cen-NIV-26443B" title="See cross-reference B">B</a>)" data-cr="#cen-NIV-26443B" style="box-sizing: border-box; position: relative; vertical-align: top; top: 0px;"></span> this man<span class="crossreference" data-link="(<a href="#cen-NIV-26443C" title="See cross-reference C">C</a>)" data-cr="#cen-NIV-26443C" style="box-sizing: border-box; position: relative; vertical-align: top; top: 0px;"></span> or his parents,<span class="crossreference" data-link="(<a href="#cen-NIV-26443D" title="See cross-reference D">D</a>)" data-cr="#cen-NIV-26443D" style="box-sizing: border-box; position: relative; vertical-align: top; top: 0px;"></span> that he was born blind?”</span></span></p><p style="box-sizing: border-box; margin: 0px 0px 10px; -webkit-font-smoothing: antialiased;"><span id="en-NIV-26444" class="text John-9-3" style="box-sizing: border-box; -webkit-font-smoothing: antialiased; background-color: rgba(255, 255, 255, 0);"><span class="woj" style="box-sizing: border-box; -webkit-font-smoothing: antialiased;"><span class="versenum" style="box-sizing: border-box; position: relative; vertical-align: top; top: 0px; font-weight: bold;">3 "</span>Neither this man nor his parents sinned,”</span> said Jesus, <span class="woj" style="box-sizing: border-box; -webkit-font-smoothing: antialiased;">“but this happened so that the works of God might be displayed in him.</span></span></p><p style="box-sizing: border-box; margin: 0px 0px 10px; -webkit-font-smoothing: antialiased;"><span class="text John-9-3" style="box-sizing: border-box; -webkit-font-smoothing: antialiased; background-color: rgba(255, 255, 255, 0);"><span class="woj" style="box-sizing: border-box; -webkit-font-smoothing: antialiased;"></span></span></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhER5ertIGOl5hqgtGBHmas2vP_OVTeddewcrBxOEz3zW3HQ1oChT4mmbhWiscZGo6Qwbye79yrT4UKgIKaF1Gn7MvX4WNGoLB3Uwdwi6D0-AtE2KNIhSQSc0mpYcuG2-EAxenxUhmM0g/s640/blogger-image--1775954112.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhER5ertIGOl5hqgtGBHmas2vP_OVTeddewcrBxOEz3zW3HQ1oChT4mmbhWiscZGo6Qwbye79yrT4UKgIKaF1Gn7MvX4WNGoLB3Uwdwi6D0-AtE2KNIhSQSc0mpYcuG2-EAxenxUhmM0g/s640/blogger-image--1775954112.jpg"></a></div><br><p></p></div>Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.com1