Tuesday, October 2, 2012

Our very own definition.

I'm having a hard time finding words to write this blog today. It seemed much easier, much more freeing to write when we were in the NICU in Indianapolis. Away from people, away from home, away from the every day life. When we were in the NICU and I wrote about my bad days, I wrote knowing I wasn't going to have to see anyone I knew, now sharing my bad days almost feels like I am exposing myself. You see its hard to write about bad days, because in the short month that we have been home its been mostly happy, flowers and sunshine posts. Once out of the NICU its assumed that the roller coaster of ups and downs pretty much steadies and becomes more like a leisurely stroll in the park. Unfortunately, its not always true, just because we are home doesn't mean everything from here on out will be uphill and Blake is going to be a normal healthy growing boy, and sometimes to be honest- that is just hard to swallow as a parent. We always seek the best, wish for the utmost perfect life for our children. We hope for our babies to grow up to be fast moving tots that you have to chase after so much it gets exhausting. We hope for our tots to turn into school age children with their back packs and lunch boxes. We expect for our school aged children to turn into little pre-teen messes, testing our every nerve. We expect those, some times pain in the butt, pre-teens that we love so much to turn into driving everywhere teens who love us one day and hate us the next. Then teens to college grads, finding themselves and coming home only for laundry and money. Then college grads to adults who have found someone to love, and then they get married, and then have children all of their own. We hope for our children to have the best, and want for nothing! But for me, mostly what I wish for? I just wish for normalcy. I wish that my child wouldn't have huge obstacles to overcome, I wish that Zach and I could just sit at home and watch our child grow and meet milestones and laugh, play and giggle with him. But instead we sit at home doing exercises, and taking him to appointment after appointment. Being poked and prodded on, labs drawn, cold stethoscopes on his chest, bright lights in his eyes, pointy lights in his ears, testing reflexes here, pulling there, POKE POKE POKE. It seems like I spend more time meeting new doctors than I do sleeping- (which is probably very accurate with the sleep deprivation Zach and I are experiencing as new parents---I guess that is one NORMAL thing I can count!) Zach and I find ourselves repeating the same phrases.
"Well we don't know really why he was born so premature...no I had no signs....I was perfectly healthy" 
"He was a twin...no Conor passed the day after they were born....oh, its okay. Thank you."
"He has had 9 surgeries...we were in the hospital for 139 days."
"Okay we will see you next week...month...etc, etc, etc."
While we see doctors, and tell our story over and over we watch as our son gets evaluated for 10-20 minutes by a complete stranger who has not seen our son the past 5 1/2 months fight and beat every odd. We see a complete stranger judge him and his abilities strictly on a SCAN, or a TEST that was done months ago. We watch a complete stranger go over the same statistics that every single doctor has gone over with us a million times, and we, every time, leave the office a little distraught and disheartened. But then we remember, just like I said this is a STRANGER, they do not know our son, and they are just doing their job by giving us all the information of what could happen in Blake's future.
That is their job....and our job is to remember....
Remember that it is GOD's job to determine Blake's outcome.
Today we met with Blake's developmental pediatrician, no real bad news was given to us, but just information was given to us regarding Blake's future, and what could happen based on his multitude of complications he had at birth. Because of his extreme prematurity and his IVH  (Brain Bleed) Blake will be seeing an physical therapist, and an occupational therapist at home to work on muscle tone, strengthening exercises, and motility. The full on assessment of Blake was truly not bad, and currently he is meeting all milestones, but the doctor is a little concerned that as he gets older that is when the milestones will get harder and Blake will have more likely a difficult course. But again, I respect that knowledge, but put my faith in the one physician I know is the only one with all the answers, and knows the course we will be following.
So today I write, finding my words, and yes I feel a little exposed, but if I can just shed light into one day into a parent who has a not so "normal" child then I will gladly do it! It is freeing and honestly helps to heal my sometimes broken heart. Its hard having a sick child....
Do I wish for normalcy, and for Blake to have no difficulty? I do!
But, will I find him perfect in every single way even if he does have difficulty? ABSOLUTELY!!!!
It is our future....our very own path...our very own new definition of normal.

My sweet baby boy in his car seat going to see Grandmo.
 Tough lil' man.
 Blake and his sweet potatoes
 He is deciding whether he likes them or not.

Found these pics from back in August from the NICU- We had a little photo shoot while his NG was out for a while and he was just being too cute!! Had to share!


  1. Wow. That's all I can say! You all are
    So strong!

  2. Katie, being exposed i am sure is difficult but it sheds a light onto what we need to pray for u. As often as we pray for ur boys we also pray for ur stenghth and acceptance of this not so normal normal. ((((Hugs)))) to u today!


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