It's true, through the darkness and the trials. At the hospital and home, He will be with me always because I am loved and I am valued. In a world of medical. When it seems all I do is make phone calls, shuffle paper work and travel to specialists because my child is special, it's easy to lose myself. My mind frequently spins with the last medical info or the dread of the upcoming test/hospital stay/procedure. It's a burden that is heavy and constantly reminds me that there is no end in sight....but then I remember, I am loved. I am valued and I matter. I remember when I carried my miracle who's insides and outsides were being formed intricately and uniquely He was whispering His promises into my heart. That this is a beautiful, blessed and different journey. That we'll always and forever be okay because even though our future is uncertain He will always have His arms wrapped tight around us. He's always close by to hand the ever looming anxiety and fear to. I am not ashamed of bad days because bad days don't mean I'm a bad person, they just mean I AM a person and I am growing. I can do this because He is with me and shining enough light in my path for the few steps in front of me and all I have to do is step.....one foot at a time.
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.
Monday, December 30, 2013
Saturday, December 21, 2013
Happy three years! What a wild ride it's been. Thank you for being YOU! Bright, bold, beautiful YOU. You're different from the rest. You're insides , your outsides, your heart and your soul, I wouldn't change one tiny thing about you. I've loved everything about these crazy 3 years. I've loved the good, I've loved the bad, the chaotic and the sad. I've loved it all because it's all part of who you are and what we've become. We are different. We love more, we yell less....all because of you. You are so beautiful. Case, I'm so thankful you were born just the way you are. I love your spirit, I love your smile, you'd crooked fingers and tiny toes. I can't believe all you've endured in 3 short years, all of the pokes, all of the tests, the surgeries, the nights at the hospital but through it all, you still smile so bright. You are my inspiration and I still remember the first time I saw you. I remember looking into your tiny eyes and just knowing everything would be alright. Everything will always be alright. No matter where we are or what we are doing..... we will always be alright because we will always have each other. Just like your first Christmas when you were in an isolate with needles, wires and tubes and we celebrated at the Ronald McDonald house with a tiny tree and a lot of love.....You see Case, it doesn't matter where we are or how we spend our days as long as we always have you. Bright, beautiful, you.
With all my love, always and forever....
|When I was 1!|
|When I was 2!|
|I am 3!|
Monday, December 16, 2013
Sometimes we just need held. Sometimes we just need to give up, look at the few steps in front of us and just trust. We need to TRUST that He will ALWAYS be near. When the world runs us ragged and we can't see the light at the end of the tunnel we need to stop letting the busy control us and just be held. We need to remember that there is always someone (many) with a harder battle and when we feel too tired to take one more step...... We need to stop and pray. Pray for those hurting. Pray for those breathing their last breaths. Pray that we will never, never take our breaths for granted. Pray that we can see the blessings in the busy., in the "not fair". That we will never be to busy, too selfish to appreciate God's grace in this crazy place. We are blessed. We are valued. We are loved. Above all else, HE will NEVER leave us or forsake us. Never.
Tuesday, December 3, 2013
The Best Job in the World.
I'm a special needs mom. I know what stomach juices drained right from the stomach smell like. I know how to change a feeding port right out of a belly. I've "slept" in firm backed chairs by hospital beds and told Dr.s they are wrong. I've witnessed the undeniable miracle of a baby that "won't" turning into a baby that does and does again. I've seen pain, I've planned goodbyes and thanked God they were only plans..... All of these things and many more are things I never imagined I would do. Frankly, if you would have told me this is what life held 10 years ago....I would have run for the hills. There is no way to know until you experience it the unexplainable blessings and deep joy being a mom of a miracle can really bring.
This job is not for the faint of heart. Sometimes it feels like a deep, lonely pit. One that just goes deeper with no end in sight.....Honestly, even though we are approaching year number 3 it sometimes still feels like the "newborn" stage. You know, the beautiful first couple months where you aren't sleeping, showering or thinking clear thoughts. During those months you hold your beautiful baby and hold on to the hope that "this too shall pass" and someday your child will be grown, independent and not needing much more than hugs, food and warmth. For us special mommas, we don't know if or when that will ever happen. We don't know if our children will ever not need feeding tubes and full time care. It's a hard reality to not know what your child's future holds. All you can do is hold on, drink coffee and continually remind your self that strength comes along the journey. I know that I was picked for a very special reason and that I do indeed have the best job in the world!
" Do all things without grumbling or disputing, that you may be blameless and innocent, children of God without blemish in the midst of a crooked and twisted generation, among whom you shine as lights in the world, holding fast to the word of life, so that in the day of Christ I may be proud that I did not run in vain or labor in vain."
"Colossians 3:23-24 Whatever you do, work heartily, as for the Lord and not for men, knowing that from the Lord you will receive the inheritance as your reward. You are serving the Lord Christ."