This is a post I have avoided writing for a week and a half now. Yes, I have been super busy (did you read my last post???), and, Yes, I have a thousand excuses I could come up with as to why I haven't taken the time to sit down at the computer in the past week, but the truth is...I just didn't want to put it in writing. Once it's in writing, it's real. Once it's in writing, I have to start actually processing the truth.
But I've been pretty (overly?) open and honest up to this point, so it's only fair that I continue in that same manner.
This is a post I knew I would write eventually. I didn't know how soon it would be, or how prepared I would be once the time came. I'm not sure I would have ever been prepared though. Because as hard as you try, there is no preparing yourself for the news...
For the first time last week, we were told that Dylan has started to fall behind.
Okay. I know. Over-dramatic. He is only 6 1/2 months old. There is wiggle room in the scale kids are measured on at this stage in development. If Dylan was born with a normal-sized head, and if we hadn't done an MRI at his birth to discover that his brain is malformed, no one would have any concern with his development right now. He is doing A LOT of the things you would expect from a kid his age. But we found out last week that he's not doing everything you would expect. In reality, at 6 1/2 months, he's behaving about at the level of a four to five month old.
Last Monday, Dylan was evaluated at Dornbecher Children's Hospital. He was seen by a Developmental Pediatrician and a Physical Therapist. Both specialize in kids with neurological disorders, and both came to the same conclusion independently that developmentally Dylan is at a four to five month level. These were the same specialists that evaluated Dylan about 3 months ago and, after seeing his MRI, were surprised to see him functioning as "normally" as he was. The post I wrote after that last appointment was so much fun. I came straight home that night and started typing out the story from the visit, celebrating the news that our little guy was doing so well! I received so many notes of encouragement after posting that, friends and complete strangers that had been following Dylan's story were rejoicing with us in his accomplishments. And the truth is, Dylan has progressed a ton since that last evaluation. He is rolling, eating solid foods, interacting with toys. In the far back corner of my mind there may have been a tiny little voice whispering that maybe he should be doing more by 6 months, but I was so focused on what he IS doing that I never took the time to think about what he SHOULD be doing.
So when I was told last Monday that he's 2 months behind where he should be, I'll be honest....I was sad. Sad that the reality of what we were told when Dylan was first diagnosed as having Microcephaly was finally starting to materialize. Sad that I may have to face the truth sooner rather than later that my kid is different, and will start to be more and more different as time passes. Sad that things are already starting to be harder for him than for other kids his age...things like sitting up on his own, rolling over (he still only goes over his left shoulder), and crawling. We had a very honest conversation with the Physical Therapist at Dornbecher, and his best guess after his evaluation was that Dylan would be walking around his second birthday. I know that Dylan is going to continue to do things on his own schedule and nothing a physical therapist says after an hour-long evaluation is going to stop him from walking when he's 14 months old. But I also know that it's time to prepare myself for the reality that my little guy will struggle to overcome the challenges of his high muscle tone, and may continue to fall further away from the development curve as time passes.
One day in the future I will be used to it. I will have a really comfortable and honest answer to give people when they ask me about Dylan. Strangers in the grocery store, gawking at the cute little boy, who ask how old he is and innocently follow up with "oh, when did he start crawling?" or "is he walking yet?" But I think the adjustment period will be hard on me. As a mom, it is so fun to brag about your kids and their accomplishments. I'm not going to lie...when Dylan rolled over for the first time at 4 1/2 months, I was on the computer that night blogging about it! As dumb as it is, our competitive-mom nature comes out when we are talking about our kids. Now is the time for me to throw out the window any tiny desire to compare Dylan with other kids. He is who he is and he will do what he does when he does it (That's a mouthful!). And, forgive me if you will, but I am going to fully utilize my right to BRAG when this kid does accomplish new and exciting things! Because I need to celebrate! And I need to keep reminding myself of the simple fact that, based on the results of his MRI, EVERYTHING Dylan does is a miracle worth celebrating!
So, yeah, I said it out loud. I wrote it down for the world to see (or the tiny population of people that follows along!). And, you know, it really wasn't that bad. There will always be a sadness in the back of my mind, as I mourn the "normal" childhood or life that Dylan may or may not get to live, but I'm still so excited to see how this kid is going to change the world! And, thank God, he doesn't understand when some specialist says he's falling behind. He's just working extra hard each and every day to sit unassisted, to pick up that cool toy in front of him, to roll towards the mirror on his right instead of always to the left. He'll get there. Just wait for it. He's going to amaze us all!
