A Very Special Case.

This is how Case dances. It's SO funny! I don't know why he opens his mouth like that but I think it's the cutest thing EVER!

The other day I was talking with an old, dear friend I ran into. I  referred to the last two years as "my life turning upside down". Then I realized, that maybe our lives turned right side up? I've been through more changes in the past two (ish if you count my pregnancy) years than the whole 26 years of my life prior. It wasn't just Case, Dan's job changed, the kids went to public school from being homeschooled. The way I thought, felt, and saw things changed. Everything just changed. I look back at simple and I don't miss it. Sure it was easier but it was less blessed. I think of all the words I never knew I'd know. The people I'd never imagine I'd meet. I  not only know what PFO, ASD, VSD, IUGR, GERD, Whole Exome Sequencing, GJ and Stenosis of the Foraman Magnum mean but also what they mean for Case. I went form being a mom to being a mom, a nurse, a cheerleader, a fighter, an advocate, a scheduler, a puke catcher, a tube wrapper, a Stoma cleaner...

Dear Case, Today you are two. It's been two long years. Two years ago today I was laying in a hospital bed with empty arms while you lay in an incubator in a NICU 7 miles away. It felt like 700 miles were between us but I kept reminding myself that you made it. You were alive, which is more than they predicted. I was scared. I was tired. I ached for you. I was beginning a journey that had a lot of bumps and turns, ups and downs and I had no idea if I was strong enough. Even now, sometimes I wonder if I'm strong enough. Now as I sit here watching you bathe, smiling and bright. Tubes draped over the tube, a port in your belly and scares here and there... I look back at a narrow, tear stained, rocky, pot holed, beautiful, bright, long road. This journey is more than I bargained for but has paid me back ten fold. You've brought out the best in me and though you I'm getting over the worst in me. For every one tear you've brought me one hundred smiles. For every sleepl...

Here I am. 2 years later. Two years after the hell that was Case's  pre-birth. It's been two hard years. Two years full of blessings and tears, hope and disappointment. Two long, worth it all years. As Case's birthday approaches I reflect on his life and pre-life. This has been the hardest thing I've ever done. Learning to take "one moment" at a time. Teaching my self not to get caught up on all the "what ifs" and  that it's okay to grieve the "never-will-bes" such as nursing my fourth, cheering him on at a football games, etc, etc. I've learned that things don't go as planed. That crying heals. That not everybody will always understand. I've seen that what I thought would be was overrated. That I need Case as much as he needs me. I realize I wouldn't change him for the world because he is a new-kind-of-perfect. I realized that no mater how many times I go though one of his surgeries, I'll probably always cry whethe...

Going. Going. Going. Gah! Lately it's been just that. I'm going and going and going..Between Case's fever, poop troubles, all of his care and 3 other needy children there's not much rest for momma. At the end of the day I feel totally exhausted. As I lay in bed I let the things that didn't go my way go and thank god for all that I'm blessed with. As I prepare for yet another surgery on my sweet boy's body (this Wednesday) I feel oddly at peace. This is surgery number 5 not including his GJ tube placements or any other procedure he's gone through. No, it's not fair for a not quite two year old to have endured So. Incredibly. Much already. To know pain daily and to live hooked up to tubes. But I think of the Spiderman quote, "With great power comes great responsibility." Case has a God given power to spread joy, open hearts and bring peace without words. He does this and expects nothing in return. He is incredible. A hero. The least I can d...

Case is behind in speech but communicates very well! Today his therapist taught him some signs and he did great! Here he is popping bubbles and "talking" to the therapist! :)

Case puts the dish towels away for me every time. It's so cute! This is a little dark but worth the watch.:)

Being a mom of a "less than typical" child in the eyes of the world changes how you look at, well lots of things. For instance, the common fever for Case could and has sent us to the hospital. So, I decided to compose a list of a a few of a special needs mom's least favorite things (from my perspective;) *Fevers. No, nobody LIKES fevers but for a child with special needs there's so much going on on the inside that a fever could mean a very, serious infection and lots of hospital time. * The show, "The Baby Story". I used to love that show. Now, it really yanks a nerve. Maybe I'm a little jealous that my birth of my special child was less than typical or I'm annoyed that the stupidest, little complication will send everyone into a frenzy. Either way, it annoys me. * Watching other children eat at a restaurant. It just hurts my heart a little for my son not to be able to do what most moms (including me with my other children) take for granted. Ea...

If I could go outside of myself, hug myself and tell myself one thing, it would be that's it's going to be okay. I've never met a mom of a child just like Case. I've never had anyone say that they know exactly what I'm going through or what my future holds but some nights I wish I did. Tonight, all of a sudden Case felt hot. I took his temp and it was 103. Because of his kidney problems, this could potentially be a big deal. I'm suppose to call his pediatrician anytime he has a temp over 102. So, of course I called right away and if Tylenol didn't work I was suppose to rush him to the ER. This started to get to me. I started to think that maybe I'm not cut out for this. At the drop of a hat our lives could change. There's no guarantee that anything will ever be normal or easy. If I could jump outside of myself on nights like this and give myself a hug the one thing I would say is that it's going to be okay. That I am strong enough for this. Th...

Case is our fourth child. He has 3 sisters. At 22 weeks pregnant I had a routine ultrasound. The tech seemed calm, ordinary. She said we were having another girl. We named her Parker. "She" was healthy. Typical. Fine. A week or two after that "normal" ultrasound we got a call. There was a spot on our "baby girl's" heart and one on "her" kidney. Not a big deal. At about 25 weeks of Pregnancy, We had a second level sonogram about an hour away from our home.  I was told our baby would be different. Very different. It's limbs were way behind in growth. It had heart problems, kidney problems, and was small. Very small. The doctor strongly suspected Down syndrome or Trisomy. He did an amnio. I cried. He told me this was not my fault. I was doing everything I could. The baby was just made different. Two and a half weeks later, I got a call. I was there, in that hotel. On a mini "getaway" with the family. The doctor called an...

Since Case was born, almost 23 months ago, I gained a second home. Case spent 38 days after his birth at Children Hospital, Pittsburgh and several hundred hours after that. It takes between 2 and 3 hours (depending on traffic) to get there. We go between 2 and 4 times a month, usually. Between appointments, x-rays, blood works, surgeries, tests, tests and more tests we feel like we have two homes. Half of my heart is here in my physical home and the other half in the home that has saved and enhanced Case's life. Yesterday, for the third time in 3 weeks we went to our second home. It was only for a follow up with Neurosurgery but it was pretty early so we went last night and stayed at the Ronald McDonald house. I love that place too I would tell you how much, but that's a whole other blog. Anyway, we saw the PA and the surgeon who untethered Case's cord. His wound looks good. They still don't want him bathing (only sponge baths) for 4-8 weeks (when the stitches complet...

Would you like to brighten the day of the patients at Children's in Pittsburgh this holiday season? Click this  link to learn more.:) I've also added a "donate" button if you'd like to donate though Paypal.:) We will use the money to spread smiles to the CHP patients this season!:) Case chillin' on his first Christmas at CHP.

To my two oldest daughters. Meredith Rae and Samantha Lynn. This is what I would tell you if I could text you after you got on the bus in the morning...I'm sorry you had to run to catch it. I'm sorry you almost miss it 3 out of 5 days a week. Thanks for being patient with me while I try to split my time and energy a million ways. I'm sorry I can't chaperone your field trips and volunteer at your schools much now that your brother doesn't have day nursing hours. Thanks for stepping up. For helping out. For being wise beyond your years. Thanks for understanding and loving our "dates" even if they are usually just to the grocery store. Thanks for not minding too much when your homework helper is distracted by a beeping pump, vomit and important phone calls. Thanks for growing in wisdom and understanding that different isn't defective, different is beautiful. I wish you could stay home from school and cuddle me all day like Lainey but I know that school ...

With all this thankful talk on Facebook, Twitter and tv I starting thinking about my journey. Today I am thankful for my very special journey. As I was reading the thankful statuses on Facebook yesterday evening, one in particular caught my eye. It was from a lady who is suffering greatly physically from a serious illness. She opened her heart a bit and for that I am thankful. She expressed almost exactly how I feel about the journey I'm on. You see, I've been having some long days, some exhausting, hard days but they do not steal my purpose or my true and deep joy. At the end of my day I am thankful. Thankful for all the goods. Thankful for the "not so easies", thankful for the gifts along the way.. No, I don't want Case to be sick, vomiting or uncomfortable but for the joys, the differences, the journey I am thankful. You see this lady has a big heart for the Lord. she knows his love endures forever. She is finding her strength in the journey and joy along the...

We know first hand how hard it is to spend time in the hospital beside a sick child. We also know the warm feeling that spreads through our hearts when someone comes to our sweet child's hospital room with a gift. This Christmas, please joi n us in spreading smiles to patients at Children's Hospital of Pittsburgh. We'd like to donate Christmas gifts to the children who can't go home for the holidays. From now until December 13th we'll be collecting donations. Below is a link including suggestions to make a little boy or girl smile this Christmas. Please note, in the hospital, infection is always a risk. To protect patients, the hospital can accept only new items or those items that are clean and in excellent condition. We appreciate your support and know how meaningful this gesture will be to patients and their families. We'll be rooting for hope and spreading joy to those not able to be where they should be for the holidays...home. Please feel free to c...

In the past 9 days, Case has had surgery, fevers, countless vomits, a short hospital stay, an appointment with the Ortopedic surgeon, an x-ray on his legs, hips and feet, a hearing test (that revealed some issues and led to a new specialist, ENT), a crainiofacial appointment, trips to and from Pittsburgh, a sore, healing back, extra meds, and countless beeping from his pump....on top of the Case issues, we had a showing for our house. It took all day and help from a friend to get ready for...but I'm SO ready to get this moving party started! If Dan's not working or driving he's often sleeping (due to the fact that he's working his ass off) and our three girls are extra whiney, fighty and cranky. Then of corse there's the usual phone calls, insurance issues etc., etc. Let's just say, this momma is worn out! So, then come the stress headaches. Ever so slightly they begin but with each passing hour they get more and more intense. They steal my day, my moments, m...

This retching/dry heaving/vomiting crap, well I'm over it. Case had a really rough morning. For about two hours he would start retching, which turned into a dry heaves until he finally would over come his Nissen and vomit. That was then followed by crying out in pain. He is fed into his intestines so, his vomit consisted of stomach bile and Meds. This happened quite a few times. The first time or two, I laid in bed listening to his night angle in nursing scrubs whisper to him just praying it would stop. Finally, I got up and called Neurosurgery to have the Dr on call paged. The pain reliever and Zofran they sent him home on are such small doses, I doubt they even work. As I laid on his floor while Jane gently rocked him I thought of just how over the retching/vomiting I am. At this point if he retches/dry heaves too much he could open his incision and then we'd be in trouble. Little guy needs a break. I'd like to do it for him but I can't. Poor guy was in pain from th...

"So hold me. When You're here ill never be lonely. You're my favorite part of this story. So, sing it again and again.." I woke up with those song lyrics in my head Tuesday morning during Case's inpatient stay at Children's. Case had his tethered cord release surgery on Monday and is doing great! We stayed at Children's until yesterday. I'm stayed in his room with him and had a peaceful stay. The hardest part was when Case reached his hands up and from laying flat in his hospital crib and said, "wanna ge owwwww" (want to get out). He had to lay flat for 48 hours. He's amazing and special for a very apparent reason. Hospital stays, needles, doctors and medications have become a part of his life so much that it's his norm and he walks down the halls like he owns the place. I've felt a particular amount of joy and peace this time around. I belong too. Being a special mom is who I am and runs deep in my blood. I talk in medical term...