I’m not exactly sure what it is about me, but I just have not been able to bring myself to write this update. It’s almost like a subconscious rebellion… We’ve known this day would come since we were in the NICU in Ohio… We thought it would come last year… And yet, the fact that it is finally time for the MOST major surgery/medical procedure in a series of major medical procedures is just a bit surreal. As of this moment, May 7th is Go Day. Just a dude and his dog :) This post will be pretty factual as I am still processing a lot of my own emotions. At the same time, I am humbled and thankful to my core for the army of people who have and continue to love and pray for Nathan and our family. There is only one path ahead for my son, for my heart, for our family. In light of that, we want to share and ask for your prayers. On May 7th, Nay will have a RED device installed into/onto his face. RED stands for Rigid External Distraction - You can click here to get a bunch of images
Some memories are sharper than others… February 9th, 2014 was my 29th birthday and Nathan was in the middle of a 7 consecutive week run in the ICU, for most of which he was intubated. About 80% of his 4 months had been spent in hospitals and he had already undergone several surgeries of increasing intensity. This stay was, quite literally, a fight for his life and the questions about quality of life were (understandably and appropriately) met by Dr’s with vague answers, no promises and even uncomfortable and compassionate murmurs of “IF he makes it past 2….” That year, my birthday fell on a snowy Sunday. I remember waking that morning and staring blankly out of the ICU window into the thick, cold, grey, relentless snow of an Ohio February. The only thing more bleak was my heart as I called Jonny, cried and then let him go so that he could take care of Madison (not yet two) and then get to church…. It was, after all, a Sunday. I’m not sure how much time passed, but it could
(It’s Jonny this time, so set your expectations accordingly - my wife's the writer!) My heart is full! Even though we are 4 days away from what will likely be one of Nathan’s hardest surgeries and certainly the most intense recovery - I witnessed something truly amazing this morning. Our brave son, Nathan, got up in front of 450 of his peers and shared a presentation he created about his upcoming surgery. The backstory is that Nathan loves making google slideshow presentations. He’s had to make a couple for school which is what got him going. But just for fun, he’s made one on the NFL and on the NBA and on various soccer players (feel free to ask him about them, he’d love to show you :)) So when Jen suggested that maybe he make one about his upcoming surgery to share with his class, he was all over it. Then after he made it, he shared it with the school principal and she asked if he would be willing to share it with the whole school during the morning assembly and to our great
oh my goodness, she is so cute and tiny!!! so fun to actually see her "in action" :)
ReplyDeletethanks marn-marn!
ReplyDeleteLove it!
ReplyDeleteI just love your little girl!
ReplyDelete