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This blog was inspired by 31 for 21 & is about my wonderful family.

"As a mother, my job is to take care of what is possible & trust God with the impossible." ~Ruth Bell Graham

"Never look down on someone, unless you're helping them up!"

Saturday, October 13, 2012

Day 13

    Every day of my life, I feel so awful for grieving for my son when I received the prenatal diagnosis of Down syndrome & a CHD (congenital heart defect).  I think back at how I was crying & pleading with God for my child not to have Down syndrome while we waited on the results to come back.  Then I remember the phone call that changed our lives forever.  How I acted as if I just heard that my child had died, when in fact he was thriving & fighting for his life.  I was being so vain.  I wasn't putting my trust in God.  I wish that I knew then, what I know now.

     Then:  I was so worried that people would make fun of him for looking different.

     Now:  If people do make fun of him, they do it in private.  I have never heard anyone say anything negative about my son.  All of the comments I do hear is "he's so cute" "how adorable" "look at those beautiful blue eyes" "oh, I could just kiss those cute little cheeks!"  We always hear compliments, never complaints.

     Then:  All of the "statistics" say that my son may not talk, may not walk until he's 5, & he may need to be tube fed.

     Now:  He talks like any other toddler.  Keep in mind, he doesn't talk like a 'typical' 3 1/2 year old, but more like a 2 year old.  But that's totally fine.  I'm so blessed that he does talk.  He had 3 heart surgeries before he was 2, so his walking was delayed.  He did walk before he was 27 months old.  Yep, that's my rock star!  He was only tube fed once, & that was when both of his lungs collapsed after his first OHS (open heart surgery).  He's still not the best eater, mainly because he's so picky, but he's doing great according to all of his doctors (& he has MANY doctors).  I've learned not to listen to 'statistics' or 'specialists', I listen to my instincts & my son.

     Then:  How is having a brother with special needs going to affect my oldest son?  (my daughter wasn't born yet)  I thought that my oldest son would resent my baby.  That he'd be ashamed to have a brother with special needs.  That he would feel neglected because of the time I would need to spend with the baby.

     Now:  They have the most wonderful bond I've ever seen.  My boys love each other with the purest love.  My oldest son isn't ashamed of his brother at all, in fact, he's proud of him.  He wears a Down syndrome awareness bracelet every day...he even wears his Buddy Walk shirts to school.  He is a great advocate for his brother.  One little tidbit I'd like to add is that my oldest son was throwing the football with a young man at the Buddy Walk...& that young man has Down syndrome!  Yep, I was, & still am, so proud!  My oldest son is now a teenager, so he does his own thing a lot of the time, but we try to include him in everything we do.

    Then:  I was worried about caring for him.  Would I know what to do?

    Now:  Caring for him is no different than caring for any other child.  I think all mothers worry at some point.  No, there are some challenges.  Like getting him to eat...potty training...getting him to drink out of a straw or a regular cup.  But, those things will come in time...& the eating part is just him being picky.  These things I can handle.

     Then:  I was concerned about his health.  With all of the possible health issues he could have...what would he have & how could we handle that?

     Now:  Well, I'm still concerned.  I don't think that will ever change.  He did have a CHD, which was repaired just one day shy of him turning 5 months old.  He developed infective endocarditis, coded right in front of us (luckily we had rushed him to CHOA @ Egleston just a few hours earlier), & had to have a life saving emergency OHS the next day (the day he turned 7 months).  We were told he wouldn't survive that infection...it had done far too much damage.  But, to God be ALL the glory, he did.  Since his little heart repaired itself, he is left with a lot of scar tissue that is causing him to have tricuspid stenosis.  He had to have a 3rd heart surgery when he was 23 months old.  He is still in congestive heart failure...has been since he was 2 weeks old, so he's on a diuretic daily to help with excess fluid.  He will need that valve replaced sooner or later, so until then, we watch him & wait.  He also has a thyroid imbalance that we're monitoring.  He has some problems with his eyes crossing, so we're patching & waiting.  He also has GERD, which he takes medicine for daily.  Because his immune system isn't the best, we have to try to avoid any circumstance where he could become sick.  If he gets sick, it's 100 times worse on him than a child without Down syndrome.

     Then:  How can I handle him having an OHS?  For nearly a year, I knew my son would require open heart surgery to repair his complete av canal defect.  How could I handle knowing his life was in the hands of a surgeon I had never met?  

     Now:  I was right to trust in God, THE GREAT PHYSICIAN.  I knew that He had it covered & that He helped guide that surgeon's hands to fix my baby's broken heart.  For nearly a year I had dreaded that day.  I knew I'd be a complete mess.  To my surprise, I was completely opposite.  Sure, I cried.  But not hysterically, like I thought I would.  I thought I'd be a nervous wreck, but I wasn't.  I thought I'd be on edge, worrying the entire time...that those 4 hours would be the longest 4 hours of my life.  Instead, time passed quickly, & the entire time, it was as if a calm came over me, as if God Himself had His arms wrapped around me.  I thought I'd be upset seeing him on those machines, with tubes, wires, & IVs everywhere, but I was just relieved to see my son.  It wasn't near as scary as I thought it would be.

    Then:  I hate to admit it, but I was angry at God for giving my what I thought was a flawed, imperfect child.

     Now:  I thank God for making him different!  This little boy has taught me so much in his short little life.  He has made me a better person.  His something extra has shown our entire family what unconditional love really is.  Now I ask God every day to forgive me for my attitude then & thank Him for blessing me.  Because that's what Troy is, a blessing!  If only I had known all of this then...

    


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