something to celebrate

Wow...it's been a while!  I think about this little blog daily, and wonder what it is I will end up posting about next.  I know there are a lot of really great people who have fallen in love with our little Dylan, some I've know my whole life and some I've never met.  And I know you're curious what he's been up to lately.  It would be easy for me to just say..."I've been so busy, I haven't had time to write..."  But the truth is, I have been intentionally avoiding my next update.  I just haven't had the motivation, or better yet, the inspiration to write.

Dylan is an amazing little kid.  In less than two weeks he will turn a year (WHAT?!?).  He is constant entertainment and is truly one of the happiest guys I know.  He radiates an incredible glow when he smiles, convincing the world that he is enjoying life to the fullest, and challenging those around him to enjoy life along with him!

But he's almost a year, and he's just not doing a lot of the things people expect from a one year old. 

So I guess the truth as to why I have been avoiding this blog for as long as I have is this:  I have been waiting to announce something...and so far there has been nothing to announce.  

For sure, I thought Dylan would be crawling by now.  His physical therapist predicted a few months ago that he would be on the move by the time he was 11-months old.  I was so encouraged by that prediction!  And even though he works so hard during his physical therapy sessions, weekly with the therapist and daily with me, he just can't quite get the hang of it.  He could very well surprise me and take off tomorrow -- it wouldn't be the first time Dylan surprised me.  But sometimes I watch him and I feel like he is still so far away, and I get really frustrated...and sad.  I knew that Dylan would take extra time to reach milestones that come easily to most babies, and 98% of the time I am so overwhelmed by the joy he brings to my life that I never even pause to consider the delays that are becoming more and more evident...but there are those moments when I see a baby much younger than Dylan scurrying across the floor on his hands and knees to chase after a ball, or looking her mom in the eye and waving.  Those moments I start to dwell on the reality of the challenges Dylan is facing.  I hate myself for comparing him to other kids, but that's human nature, right?  To watch the world around us and see how we fit in by comparing ourselves to our peers.  Unfortunately it is something I know I will struggle with Dylan's whole life.   

Dylan turning a year is surprisingly hard on me.  The one year mark is when kids start learning and doing so many new things.  Developmentally, this is such an amazing period for a typical kid.  When I watch videos of Jack at 9 months old compared to videos at 15 months, I can't believe how much change took place over such a short period.  Up to this point in his life, Dylan has pretty easily hidden his delays behind his huge smile and twinkling blue eyes.  People are so captivated by his personality that they don't notice anything different about him. There will be a day in the future, probably a few years from now, when strangers will see Dylan and likely know immediately that he is a child with special needs.  They don't need to know the nature of his delays, but they will know enough to not ask stupid questions or make assumptions about him that aren't true.  But this transitional period will be a major adjustment as Dylan's challenges start to become more apparent, and our family learns how to respond to questions, how to rid ourselves of the self-consciousness, and how to accept every bit of Dylan for who he is, despite what he is or isn't doing at the moment.  

I feel like the past year was a warm up, where we were given time to let it sink in that Dylan was born with Microcephaly, but from here on out it's going to get real.  Good, bad, or otherwise...it's going to get real.  

In ten days Dylan is turning a year, and he deserves to be celebrated.  As much as Jack deserved to be celebrated when he hit the big one year mark.  As his mom, I have no right to dwell on my own sadness, or insecurities, or fear. In fact, I have a responsibility to move past those feelings and just live in the moment!  On his birthday, Dylan will smash a cake into his little face, and I guarantee that he will have more fun and make a bigger mess than any other one year old I know (I promise, I'll post pictures!).  He will hit new milestones and, one day, I will write a really REALLY excited post on this blog about Dylan's first independent movement.  I know he will crawl soon!  

Experiencing the joy that comes from your kids' accomplishments is about the best part of being a parent.  Jack recently passed the first level of swimming lessons, and I can't express the overwhelming sense of pride I felt when he held that pale blue ribbon up for me to see.  He didn't have a clue what it even meant to pass!  But he knew that he got to ring the bell, and everyone at the pool stopped to cheer, and that the most important part of all was that he had to go home and put his ribbon on the fridge, because his swim instructor said that's where it was supposed to go.  And since we have a non-magnetic stainless steel fridge, that ribbon is scotch-taped with pride, down at three-year-old-eye-level, all crooked and off to one side. As perfect as the little ragamuffin kid that taped it up there.  

I just can't imagine how proud this mama will be when Dylan starts walking, or talking, or passes his first level of swim lessons.  These things will be so much harder for him, but I already know he will accept the challenge with complete determination.  That sparkle in his eyes has me convinced.  

And, I truly can't let myself be discouraged, because Dylan did have a huge week.  He started clapping his hands!  It's so amazing to watch...his brow furrowed in concentration and his eyes locked on his hands, watching them move slowly together, then apart, then back together again, as if he is surprised by the coordination and control he has over them.  And each time, after a few slow claps, he starts to get the hang of it again and a huge smile spreads across his face.  He is every bit as proud of himself as I am of him.  And with each clap we celebrate!  He also started raising his hands above his head in response to the question "How big is Dylan?....SO BIG!"  It's our first little game, and we have probably played two hundred times in the past three days!  Nine months ago Dylan's arms and shoulders were so tight that we spent time every day just trying to stretch them over his head while he resisted, fought, and cried.  Four months ago his physical therapist was thrilled that he was able to reach up for a toy at chest level.  The fact that he is now able to control his arms above his head, and play a back-and-forth response game with me, deserves to be celebrated!

I think the key to raising Dylan is to keep my expectations at his level.  Not low...I will never stop believing in him or challenging him...but at a reasonable level such that I am ready to run to my computer to write a blog update the same day he claps for the first time instead of waiting for him to start crawling.  Tiny progressions for Dylan deserve to be acknowledged! There will be the big updates with lots of capital letters and strings of explanation points, but there should also be more subtle updates.  This blog, whether anyone is reading it or not, is my opportunity to tell Dylan's story.  It's a story that I want to remember in detail, and I write it as much for myself as I do for anyone else.

So thanks for reading (if you made it all the way to the end...sometimes I get started and can't stop!).  Pray with me that Dylan is able to gain control over his body in new ways every day, and that one day soon he is able to start crawling...even walking.  Pray also that, by the grace of God, I can be the mom that Dylan needs me to be.  That I can ditch my insecurities and shortcomings and just spend my time focusing on the amazing gift I was given when Dylan was born to me.  For some reason that I may never understand, I was chosen for Dylan and Dylan was chosen for my family.  I have already learned so much from him, and I know I have barely scratched the surface.  Most of all, right now, I just pray that I continue to celebrate with Dylan...so please join with us for an uncoordinated slow clap and remember to not take for granted how amazing it is for you to clap those hands together! :-)