Lucas Camilo

(Burke writing) I made it out to Seattle on Wednesday for a brief trip, the goal of which is to do some reconnaissance for our potential move to the Northwest, as well as hang out with my family, who I haven’t seen all together since last summer.  Though we’re still a ways away from starting to pack up and leave DC, we are beginning a process (as we talked about last month) that will move us in that direction.  The first step is to figure out if Seattle and Portland – our two options – have everything Lucas needs for a good transition to occur.

In the last few days I’ve visited with doctors, preschools, and parents to learn about what Seattle has available.  It’s been an enlightening trip so far, and without making any conclusions or going too deep into details (because I don’t have much time to write), I did want to share a few things that I’ve learned.

First, even at places that are set up for kids with special needs like the Boyer Children’s Clinic and the EEU (both of which I had the opportunity to visit with my mom), there aren’t a lot of kids that look like Lucas.  Actually, there weren’t any kids with vents and/or trachs in the classrooms we observed.  I guess that’s logical since the most common disabilities that kids have don’t involve severe muscle weakness in the way that MTM does.  But it was still discouraging: on one hand, visiting classrooms, seeing 2 year-olds with disabilities participating, and talking with teachers made the possibility of Lucas someday being part of such a classroom real; on the other hand, the absence of medically fragile kids in those spaces made it difficult to actually envision.

Which made the experience yesterday of meeting another family with a child who has Myotubular Myopathy all the more amazing.  I connected with the McLaurin family through Facebook (many MTM parents are part of Facebook support groups) and they invited me to stop by their house north of Seattle yesterday afternoon.  It was wonderful to meet 3 1/2 year -old Trent and see how well he is doing: using sign language, holding himself up, taking part in the world around him.  His special needs are very similar to Lucas – trach, vent, and feeding tube being the most visible examples – but there are also things about Trent that are distinct (“every boy is different”, said his mom, who has had the opportunity to meet a number of other MTM families).  From the experience I know that Lucas is going to be excited to meet Trent and other little boys with MTM someday, and I know Krista will be excited to meet his parents.  Perhaps the best part of the visit was getting to talk to them and hear how similar we are in our outlooks about MTM, navigating the world of disability, and being strong advocates for our kids.

Finally, I miss Lucas!  It’s such an exciting stage that he’s going through right now, developing his ability to communicate through sign language, that it’s hard to be away for even 5 days.  I can’t wait to get back on Sunday and see Lucas and Krista and hear about their adventures in the warm spring of Washington DC (quite a contrast to Seattle, where clouds, rain, and highs in the 50s have greeted me – Krista’s not going to be happy about that part of the potential move report…)