Lucas Camilo

Last week Ida’s half birthday got a little bit eclipsed by her big brother’s six year birthday, but she did hit six months on Wednesday.  Much like what we wrote a few weeks back, she is still very big, very mellow, and radiates joy.

There are so many contrasts to Lucas’s six month birthday.  Then it was the darkest time of the Washington DC winter– February 17, 2010.  Burke and I celebrated with Lucas alone in our DC apartment, in some ways celebrating that he was even still alive – that we had all survived such a terribly hard six months.  We ate a couple cupcakes and quietly snuggled Lucas.

Ida is very much not a first child, and her six-month birthday was all about the on-the-go energy of late summer.  We went to the afternoon farmer’s market where we picked up some peaches and nectarines that I planned to give her as her first solid food.  But then when we got home we barely had time for her to taste the nectarine (she grimaced and spit it back out) before we headed out to a neighbor’s birthday party in the park.  And after a short visit to the party, we came home, left Lucas with his nurse, and took Ida out to a fun evening event celebrating 10 years of work by the Domestic Fair Trade Association.  These are the times that she makes parenting seem so very, very easy compared to the first time around.

And still, her future remains unknown.  Hitting six months means that people at the grocery store or at the park smile at her and ask if she’s trying to crawl yet.  Or comment that “she’s so big, she’ll be an early walker.”  Of course people are just trying to make conversation – and its fun to have a baby that people so often admire.  But its hard to do anything than go silent when people ask about crawling.  (We’ve tried “Oh, she’s not trying to crawl quite yet,” and get back “just do more tummy time!”)

The truth is that she still has low muscle tone and is delayed physically– the result of what we believe to be a mild, improbable, version of her brother’s disease— but seems to be very much a typical baby (or maybe even extra bright and charming!) in terms of social skills, communication and cognition.  She’s making more happy, sing-songy da-da-da and ga-ga-ga sounds.  She now wants to grab everything – tubes, trash, pine needles, tiny dinosaurs, hair, noses, toes…  But if we put her down, she’s stuck on her back.  Unlike other six month olds, she can’t roll over and she can’t sit up, so her range of objects she can reach and interact with is limited.  We have supportive seats for her to use (including most all of Lucas’s old equipment), so we go back and forth between propping her up so she can play more, then putting her on the floor to work on the strength she’d need to roll.

These delays right now are still minor — given how much less mobile Lucas and many of his MTM peers are in the world of muscle disease, its hard sometimes to feel like we’re even justified in worrying about Ida.  On the other hand, if you live outside the world of disability, it probably sounds devastating to hear that we don’t know if she’ll ever walk on her own.  And that’s where our hearts seem to be balancing these days.  Some days when we pick her up and her loose body feels like she could slip through our hands like a giant water balloon, our hearts sink a little with worry.  Most days, though, she is so luminous and funny that we just marvel at how awesome she is.

At the end of a tired day last week, I was just going through the motions of putting her to bed when I remembered how miraculous it is that she is here — that any of us are here, really.  I was holding her asleep in my arms, about to set her down in her crib for the night when I paused.  I took a deep whiff at the top of her head, which already has changed smell from awesome newborn slightly-sour-bread-smell to something more kid-like.  And then I whispered to her that I love her so much, and I am so excited to get to know her as my growing baby, and then as my big-kid daughter, my teenage daughter, and even one day my adult daughter.  I told her that she is going to move in her own, unique way through the world.  That we’re going to help her navigate and advocate for what she needs.  And that she is going to change the world.

Six years ago a little, bitty, barely-breathing Lucas came flying into the world, and we have absolutely never been the same since.  This weekend we celebrated, Lucas-style.  We threw a dino-themed birthday party at the nearby accessible playground with a great mix of family, our friends and his friends from school.  We wore dinosaur name tags, did dinosaur three-clawed races, had a dinosaur trivia contest (which Lucas won handily) and handed out dinosaur prizes.  Parties still aren’t always Lucas’s favorite thing, but mix dinosaurs with ANYTHING and he’s happy.  And he seemed to genuinely appreciate having his cousins and friends out to do his favorite things for his birthday. (And we appreciated Teyo, the game master, plus Gramma, Papa, Ashley and Brandon for the help!)  That night we had all three grandparents over for dinner, and Lucas loved continuing to be the center of attention.

It’s hard to know how to tell a six year old how much you love him — if we start, he usually just says “yeah” and wants to get back to whatever he was doing before we got all sappy.  But the other day we started telling “baby Lucas” stories and he got really excited — though stories about our trials and triumphs as parents in the beginning aren’t all that interesting to him.  He wants to know about himself.  What did he do?  What did he like?  And what else did he do, and like?  It was a fun challenge to try remember back to five or five and a half years ago (without looking at the blog!) to remember what he was doing at different times.  The stories we kept coming back to were of all the people – especially his first nurses and our friends and community in Washington DC – who loved him so much from the very beginning.  Its awesome to see him growing up, now able to talk, joke, play, tease, and share his love with more and more people.

The Allosaurus Race in Slow Motion: