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.
This amazing boy was born 12-21-10 at a whopping 2 pounds, 13 ounces due to an unknown syndrome and Inner-Uterine-Growth-Restriction. His doctors didn't expect him to live but living life to the fullest is what he does!!!!
This Is his story:
-Case was born with a multi-cystic, dysplastic non-functioning left kidney (that has since shriveled up) and fluid pockets on his right.
-He is currently J tube and TPN dependent and fed 24 hours a day intervieniouly and straight into his intestistines due to swallowing issues, poor motility and intestinal issues.
-He has suffered from Crainiosynostosis (Sagittal), Chairi Malformation a tetered spinal all corrected via surgery hopefully to never return......
-He was born with an ASD, VSD, PFO and several "normal variants of the heart that are currently stable.
-He suffers from Failure to Thrive and extreme short stature.
-He started growth hormone therapy in March, 20015. He gets daily shots and they are WORKING!
-About a year ago, he passed out in a hypoglycemic shock with sugars below 20. He was quickly stabilized being we were at the hospital (thank God)....He still suffers from severe Hypoglycemia and can not go without nutrition for more than two hours, even at night.... He has home health nurses at night and while at school.
-Case also has very severe GERD on top of the motility issues and lack of function in his gut. He was unable to tolerate night feeds and is now on TPN and Lippids through a central line in his chest. He takes several medications to help but nothing seems to completely work....
-Due to lack of growth and intestinal failure he had his central line placed 1-20-15 (this is a semi-perminante IV in the major vein by his heart).
-On top of all of this Case was born with many birth defects and congenital anomalies. We hope to some day have a "name" to go with what ever syndrome he suffers.....but for know, we are blessed to have our boy with us.
This life that I'm living is my story. It was written before I was born. A beautiful story full of tears and smiles, exhaustion and energy. I'm not in control of most of my story, just how I choose to "be." I want to be a character full of grace. I want people to think of my story and smile, but mostly I want to make my maker proud. Some days feel like they'll never end. I feel like I'm in over my head with paper work, phone calls, and children, but when I close my eyes at night, I'm certain this is the perfect story for me.
This past Tuesday I was having a "blah" day. I was discouraged in the fact that it seems like lately when we get one of Case's problems under control 2 more rise up. It's like taking one step forward and two steps back. When I got the mail that day there was a small box with a simple bracelet from a dear friend. You see, my birthday is tomorrow and she got me a gift but what she didn't know is that it would come on the perfect day and say the perfect thing. God bless good friends and birthdays!:)
"I love when you hold me When you're here I'll never be lonely
You're my favorite part of this story
So tell it again and again to me"-JJ Heller
I trust my story with all of my heart.
Philippians 4:13 I can do all things through Christ who strengthens me.
This kid is an adventure, every day brings joy, grace and blessing ( oh and sometimes tears). This tiny man (14 pounds 10 ounces and 26 inches long) has taught me more about life, love and strength than any pastor, teacher or book ever has. He has pushed me to almost breaking and kissed me when I cried. He brought this family to a new normal and has shown us how special, "special needs" really are. He has taught us to live in today and deal with tomorrow when tomorrow comes. He is our blessing, our lesson and our tiny teacher.;)
And now for an update on the little-big man: Case can walk and does sometimes (probably about as much as he scoots.;) He really doesn't talk. He can say a few words but rarely does. We have a consult with a Speech Therapist, August 30th. He does communicate well with pointing, shaking his head "no" and an adorable new nod for "yes". He seems to be tolerating his J feeds of Nutren JR. He does still retch some mornings for no apparent reason but that seems mild compared to the issues he had on the G feeds. He throws almost all of his own diapers away. He blows kisses and waves "hi" and "bye". He fist pumps and gives the best kisses. He is active and feisty, takes fits and apologizes with hugs. For the most part he seems to be developing quite well and is rather smart. He is a tiny toddler.:)
This week was exhausting. It started out with Case's fourth surgery and ended with his doctor adding two more specialists to his already long list. Surgery went pretty well and recovery was not too bad. He had a good bit of pain and discomfort (for that I gave him Tylenol with Codeine most of the week), fevers, some vomiting, constipation and is getting 4 teeth now. He was able to get a stitch and weight (to keep the left testicle from floating back up to his abdomen) removed at his local Pediatrician's instead of going to Pittsburgh. I asked if that was okay and the urologist okayed it (it saved us a long trip and a bit of money:). Friday, while at his Pediatrician's, I asked again about the rash that he had since April or May and he said he thinks it's chronic and set him up with the Children's Hospital dermatologist. He also set him up with the dental clinic out there. It seems Case's tiny mouth doesn't have enough room for all his teeth… Case was switched to Nutren JR. formula in hopes to gain more weight. It has almost double the daily calories as the Enfamil Enfacare and since he has been tolerating the J feeds so well, the Dr. wants to pump (literally) more calories into him.
I took Case to an amusement park this week and the ride operator made him get off of one of the kiddie rides because "he didn't have shoes on." This irritated me. I tried to explain to her that he is 18 moths old and shoes don't fit but she walked away. I wanted to know why my boy, the boy who goes through so much couldn't have fun on the ride like all the other toddlers. It gave me a glimpse into the not-so-wonderful world of discrimination. I've taken Case to that park a few times now and he rode most of the kiddie rides all the while being shoeless. I don't know what her deal was or if she really was "following regulations" that nobody else follows but it broke my heart and it was like reality smacked me over the head. Case is different and sad but true, chances are he will sometimes be treated unfairly, stared at and made fun of. I know that Case is strong and getting stronger every day. He is a beautiful soul that loves beyond the flesh and will more than not be loved the same; but for the times that he is judged and treated unfairly, I hope that he forgives and that forgiveness makes him better not bitter. A life of special needs is not for the weak. Case is not weak, he was made perfect and STRONG. Forgiveness is freedom. Though this journey there are going to be a lot of "ride operators" that don't appreciate Case and his awesomeness but that's where they are and if I hate a little every time it happens I will grow old and angry. I ask for the grace to forgive because forgiveness brings freedom to the soul.
“To forgive is the highest, most beautiful form of love. In return, you will receive untold peace and happiness.” - Robert Muller
I can't believe what she said I can't believe what he did Oh, don't they know it's wrong? Don't they know it's wrong?
Well maybe there's something I missed But how could they treat me like this? It's wearing out my heart The way they disregard
This is love. This is hate. We all have a choice to make
Oh, Father won't You forgive them? They don't know what they've been doin' (oh no) Oh, Father, give me grace to forgive them Cause I feel like the one losin'
It's only the dead that can live But still I wrestle with this To lose the pain that's mine Seventy times seven times
Lord it doesn't feel right For me to turn a blind eye But I guess it's not that much When I think of what You've done. [ Lyrics from: http://www.lyricsmode.com/lyrics/t/tenth_avenue_north/feels_like_ive_been_losin.html ] This is love. This is hate. We've got a choice to make
Oh, Father, won't You forgive them? They don't know what they've been doin' Oh, Father, give me grace to forgive them Cause I feel like the one losin' (oh no)
Why do we think that hate's gonna change their heart? We're up in arms over wars that don't need to be fought But pride won't let us lay our weapons on the ground We build our bridges up, but just to burn them down We think pain is owed apologies and them it'll stop But truth be told it doesn't matter if they're sorry or not Freedom comes when we surrender to the sound Of Mercy and Your Grace, Father, send Your angels down (singin')
Oh, Father, won't you forgive them? They don't know what they've been doing (oh, no) Oh, Father, give me grace to forgive them Cause I feel like the one losing I feel like I've been losing
Oh Father won't you forgive them They don't know what they've been doin' Oh Father, give me grace to forgive them Cause I feel like the one losin' I feel like I've been losing
Oh, Father, give me grace to forgive them Cause I feel like the one losin'
These past two weeks have posed a few minor challenges. It seemed like as soon as one thing worked out some other problem came up. Shortly after I accepted the thought of a GJ the crazy insurance battle began. Friday it seemed the insurance battle was fizzling down and surgery is on for tomorrow then soon enough Case's pump broke. Completely and out of nowhere. We were camping and with bad service so Case went a little while without food. Once I did get home and called Chartwell (the feeding supply company), I wasn't sure if they would send one cause Case's insurance is still working on covering them. Well, they came to the rescue (again) and sent him a new pump no problem (I love them). That happened yesterday. I was talking to a friend a few hours after that was resolved and said, "Sometimes it seems like I can't catch a break. Like it's one minor bump after another." Sure enough, not an hour after I said that the gigantic tree infront of our house cracked and fell. It stormed all of 10 minutes. The tree ripped down the power lines knocking ours and surrounding block's power out. But something crazy happened, our Jeep that was parked under the tree somehow went without a scratch. When I saw that it was like a message. He won't give me more, more than I can take. He might make me bend (and bend and bend and bend again) but he won't make me break. How glorious He is. To push me to my limits then push me more. To show me what REALLY matters in life. To help me to grow past getting bent out of shape during inconveniences big and small. Our power was out for 13 hours. A lot less than they thought. A couple amazing people came to our rescue. Made some phone calls and took us into their house for the night. I love to see the love of others surround us in time of need. I love how amazed people are by our boy. Last night around 11 we sat in the livingroom of our rescuer's ;). They couldn't get over how sweet Case is. They watched him play with his pump pack on and admired his ability and strength. I love this journey. The good, the uncomfortable and the frustrating. It hasn't been easy but it's our journey and it has made me stronger. Someday I will stop worrying about the things I can't control. Insurance crap, broken pumps and fallen trees. Day by day I free myself of fruitless worry and embrace (even more) the perfect gift Case is.
“How would your life be different if…You stopped worrying about things you can’t control and started focusing on the things you can? Let today be the day…You free yourself from fruitless worry, seize the day and take effective action on things you can change.”
— Steve Maraboli, Life
It's true. I am out of control. I had no control over how Case was made. I ate the right foods (ice creams good for unborn babies, right?). I took my vitamins. Drank lots of water. I didn't do drugs, smoke or drink. I rested a lot and still Case was made different. He was born with "defects". A child that would have possibly been medically aborted if he was in a different belly. All that to say he was made the way God made him for a reason and I was out of control. Even now I can't control how things go. I can't make him eat and have been having a hell of a time making him grow. Sometimes I get a real wake up call as to how our of control I really am. A week or so ago I realized Case's medical card stooped and he was thrown into an HMO by "random selection" (WTF, right?). Long story short by the time I realized what was going on it was "too late to change his HMO for July" and the HMO I picked wouldn't go into effect until August. No big deal, right? WRONG! The HMO they "picked" doesn't cover Pittsburgh Children's or Chartwell (his feeding supply company). Oh. My. God. I flipped the freak out. I cried, or more like sobbed. What about his upcoming surgery? Or emergency care? What if he pulls his GJ out? Why me?! "Well, you just need to pick another hospital." Says the rep. from CoventryCares (his sucktastic HMO). Uh, dude...this isn't a dentist or a chiropractor. This is THE hospital that my special needs child NEEDS to go to. Cheese and rice this guy really irked me. After a million phone calls I talked to a lady that said said she is going to get him"expedited" out of this HMO (cause I'm gonna tell ya, so far Coventry-doesn't-care) and get him into the HMO of my choice. Easy enough? Not really. That was 11 days ago and he's still in this HMO. We've talked and she's working on it. The good news is, if there is an emergency I was told "CoventryCares" will go out of network. Bad news is his feeding supply company isn't covered and his surgery may need rescheduled. Long story short. I need to let go and let God. Worrying is a waist of time and quite frankly exhausting. This is not my baby. He has a bigger purpose and by golly if what doesn't kill you makes you stronger, either Coventry"cares" will be the death of me or I'll be pretty damn strong!!
"Insurance problems? What-evs. I'd rather swing then worry."-Case