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01-17-12~here's to Unanswered Prayers!

posted Jan 17, 2012, 8:51 PM by Sean Molby
sorry for not getting this up Sunday as I intended 
 
Where to begin……. ­­­­

After over 6 months, and an amazingly miraculous 6 months at that, I am not really sure. There has been so much that has happened. Currently I am laughing and crying. Sounds silly I know but there is a reason. Anytime I do a new post, I generally reread my last one so as to not repeat what you already know- and yes I know I still repeat things J but it had been since last June for our last update so I really wanted to refresh my memory of all that has happened AND… well after reading it, I cried. It sometimes astonishes me that that was our very own life; it seems so unimaginable, even though we lived it! I can only laugh that I am crying over it. AGAIN! That last June post is going to be a hard one to top so I am not going to try. LOL BUT I will let you all know what has been going on

 

I guess first off I can start with T is doing beyond incredible, the advancements he has made in such a short time are mind-blowing. In fact, I remember sitting at the computer last year at this time trying to stay positive and optimistic and that wasn’t always the easiest thing to do.  It is hard to watch your child that you love so much need so much help because he was literally helpless.

From last January to June T had made huge strides.

 

But from this past June to now he has made not strides but entire continental leaps, LOL… there just isn’t anything this kid can’t do, except for maybe never give up!! He has such personality and is just an amazement to watch daily. J <insert loud sigh> I still worry and I am still scared but I am also still incredibly proud!! J

 

Last June T had just learned to crawl and he spent an entire day practicing (on his own and by himself, might I add) learning to stand by himself... It was the funniest thing ever to watch especially since he refused any and all help I offered. But after about 4-5 hours he was a pro and after that it took him less than a week to figure out how to walk by himself- remembering back it was hilarious to watch him because he wouldn’t take small tenuous steps, like one might think! Nope he wanted to get in as much as he could as fast as he could- he was making up for lost time!! So once he balanced himself he would take off in a complete sprint to get as many steps in as he possibly could before falling flat on his face- and then he would sit up with the most amazing grin on his precious little face. He was doing it his way, and he thought his way rocked!!!

 

 By then end of June he had the walking thing down and of course that wasn’t enough so he just kept at it... I could go week by week and month by month for the past 6 but I will just summarize by saying he has definitely conquered being a toddler!!!

 

He walks, runs, jumps, climbs (ON EVERYTHING), slides (off anything he can before he gets in trouble: i.e. couches, stairs, chairs, beds-LOL the list goes on). He dances (his all time favorite thing to do), he climbs the stairs by himself (I always walk behind him), and he can go down them himself (but I never really let him). He signs, talks, sings, and yes screams!! J. He has such a personality and loves it most when he can make you smile!! He is the biggest little daredevil! Nothing scares this child! AND HE LOVES to do anything that a mommy would deem dangerous!!!

He is finally just your average normal little 22 month old boy-with the exception of having only half a heart!!

 

But what a heart it is! Dr. Kaine has been brought speechless with all that T has accomplished! The little baby boy that no one thought could; has managed to baffle em all!! But even T has his limits and those include the need for his upcoming procedures. L Kaine has pushed things back as long as he was able but T will have to go in this up coming April 19 for his first medical procedure in what will be 17 months, a heart catheterization and then a couple short months later (hopefully) he will have his final staged procedure, the Fontan. It will be T’s fourth heart surgery and I am SCARED TO DEATH!!!

 

Right now T is doing beyond great! He is right where he is supposed to be or even past! He is in the 50% for height and weight -almost 30 pounds and nearly 3 feet tall (27 lbs 4 oz and 33 inches long those measurements where 3 ½ weeks ago). He is where he needs to be on all the charts for OT, PT, and speech! And he has the most AMAZING personality EVER!!!

So it is very scary to think of all that we can lose by even just one tiny thing going wrong... This time for surgery I am not handing over my sick baby boy hoping they can make him better. This time they will be taking my perfect little warrior and I can only hope and pray that no one screws him up! Its not that I don’t have faith in his Dr.’s I absolutely do. If I didn’t we would be traveling 100’s or even 1000’s of miles to other Dr. It is just there are so many variables and so many things that can happen. And that is scary…just scary!

 

But we are all holding on to the hope that T has made it through so much and overcome things that most can’t even imagine so he will make it through this next step too!!!

The next few months are going to be very hard for us. Preparing yourself to hand your child over to basically strangers, knowing that they will be doing a procedure on his heart is not something you can come to terms with or even really accept but for us it is just something that is… I have never been allowed back with Tristan when they are prepping him for a procedure but since meeting other heart families I have learned that other hospitals allow a parent to be there until the anesthesia has taken affect and that is something I plan on discussing with them. I honestly don’t think they are going to get him out of my arms any other way… His last surgery the nurse literally had to peel my arms from around him, and as she did I felt like she was ripping my heart from my chest. Letting him go was so hard and this time it will even be worse and to be honest I don’t think I will be able to do it the same way we have before so hopefully they will allow me to walk him back and stay until he falls asleep-please pray that they do!
On a side note (kinda)
I recently was talking to my grandma, just about life in general, and she reminded me of some things that happened when I was younger and how back then she had refrenced one of Garth Brooks songs "Unanswered Prayers". When she spoke to me decades ago she said how sometimes God answers your prayers in ways you will never understand, maybe not until many years later, or you may possibly never get to understand them in this lifetime. And I didn't understand then! But my grandma was right, as was good ol' Garth.J My point of this is, it got me to thinking that whenever you are pregnant and people ask what do you want, a boy? or a girl? Most answer I just want a healthy baby... In fact, that is how I answered! "I just want a happy healthy baby, it would be nice to have another boy, but I will be happy with either". When T was diagnosed, I thought my prayers had not been answered...and at the time I couldn't imagine why God would do that to us..to me, hadn't I already been through enough in this life? But it has been over 22 months and as I look at Tristan I realize.. my prayers WERE answered. No, maybe not exactly as I had planned it out; but I DO have a beautiful and healthy baby-he just has only half a heart, but with that half he has shown us how to live with all of ours...I love him more than I could ever imagine... I love all my kids. I love them equally. But Tristan has finally made me whole! If he had been born differently I would not be who I am today. Nor would Sean or the girls. He has taught not only us but countless of others.. he is our Unanwered Prayer! 
 
  For now we are going to keep on as we have for the past several months. Enjoying every moment and each and every smile and all the orneriness that comes with em J

 

I would greatly appreciate it if everyone could please continue to keep T in your prayers. Although he is doing amazing he will never stop needing all the love and support that everyone has offered! Thank you all so much

Hugs to you all~ Christy
 
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