Life With the Incredible Mr. David: Milestones and Summer

Well, today is Davids last official day of school. This year has been so surreal....especially the last five months. We have fought uphill battles and quite honestly, there were a couple of times I wasn't sure David would make it to this day. I questioned on numerous occasions if all the pain he went through, all the close calls, seizures, surgeries and hospital stays were worth it. Then on April 4th, when I saw him stand for the first time, legs beautifully straight.....I knew it was.

May 2014

This school year has been filled with a lot of expectation, disappointment, fear, unrest and milestones. Even though I knew back in August as he wheeled himself down our driveway and to his school bus that there was likely both a surgery and change in his future, I had no idea how intense the year would be. I was adding it up the other day and since August 2013, there were: 4 round trip visits to St. Louis, 2 major surgeries, 32 seizures, 10 ER trips, 6 hospital stays for two or more days and 143 days without sleeping in our own rooms or our own beds. Last night ended that.

It was a milestone that seems rather mundane and hardly blog worthy to most, but for our family.....it was huge. While David still hasn't mastered more than seven stairs under his own power, he has been miserable not being able to go upstairs. David is not a huge tantrum thrower however, his inability to make it upstairs has been the catalyst for more than one meltdown of late. The kid literally loves his room. Yesterday, as I got out of bed after my 143rd night of sleeping only because I was dead tired and not because I was comfortable....I decided it was time for the move. I knew David was not comfortable either and soon ESY (extended school year) would be starting and we would be needing that room as a classroom. It was simply time!

As Z carried David up the stairs last night, the look on that little guys face was priceless. He knew what this meant and he was beyond excited. His oooo's, ahhhhh's and laughter spoke volumes. Once ready for bed, he snuggled down in the familiarity of his blankets, pillows and bed and was asleep within five minutes. THAT my friends was a record. This morning he woke up happier than I had seen him in ages. As for the rest of us.....I think Z said it best when he said, "This feels normal. This is what I have been waiting for." Trust me, any person or situation in our house deemed "normal" by any of us is extremely high praise. It is a good feeling.

Now we move forward to summer. There will be ESY, swimming, physical therapy, doctors visits, get together's and likely a few surprises along the way. Hopefully ER visits and hospital stays won't be included in any of it.....but maybe, just maybe......walking will.

Yep, it has been quite a year. We have been to the depths of hell and as usual, David fought back and hit milestones along the way. What an amazing kid he is and how blessed we are as a family to have him, be able to watch him turn into such a wonderful young man and how excited we are to see him hit each and every milestone. These are especially amazing knowing that no one ever thought he would even make it out of the NICU 13 years ago.