Lucas Camilo

Things continue to be often joyous and amazing being the parents of Lucas and Ida. Lucas is still loving being a big brother. We got a week-long visit from our friends Alexis and Mackenzie, who were a huge help in the transition of Burke back to work, taking care of Ida so that I could take Lucas to appointments and help with a school field trip. We even took Ida to her first Mariners game.

My least favorite part of living with disability is probably the never-ending management of paperwork, appointments, opaque bureaucracies, and more paperwork. And that part of our life has not taken a break just because we had a baby. In fact, the piles of papers and lists of calls to return has only gotten longer as we continue to seek help for Ida.

For example, this week we are dealing with conflicting letters from two state agencies, one telling us that Lucas has been approved for a waiver program, the other saying we haven’t been approved. The letters use slightly different language so that it’s not even clear if they’re contradicting each other or not. And the social workers don’t answer the phones to tell us what it means. Meanwhile, we got a call from the billing department at the company that will build Lucas’s power wheelchair, and, if you can believe it, its possible that a denial would actually move along the approval of funding for his power chair faster. It makes no sense, I know.

Burke and I often growl and groan, and then quickly check ourselves on how much we complain. Because the reality is that this would be SO MUCH HARDER if we weren’t from this country, if we couldn’t walk into meetings with all our race and class privilege, or if we had to rely on  Medicaid and Supplemental Security Income (SSI) for Lucas’s care.

A couple years ago we learned about an organization that is supporting  immigrant families and families of color in King County to be able to access the services their children with disabilities also need and deserve.  We went to an event and were so excited to meet families from all over the world who were also doing their best for their children – navigating these challenging systems while celebrating all the joy the get from their beautiful, unique children.

So I was honored when I was invited to join the board of Open Doors for Multicultural Families this year. I’m just starting my board term, so I’ll have even more to say down the line as I get more involved. But for now, I wanted to share an appeal for support as we gear up for “Give Big,” an annual day of philanthropy in Seattle. We would deeply appreciate your support for Open Doors.

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Dear Friends,

I am writing to ask you to please plan to donate to Open Doors for Multicultural Families on Tuesday, May 5 for Seattle’s “Give Big” day.

As a parent of a child with a disability, I know how much work it is to navigate all of the systems that Lucas needs. To parent Lucas, Burke and I have had to essentially learn a new language, one that you can count yourself as lucky if you don’t understand: we create measurable goals for his IFSP and IEP; understand the WACs so that we can talk with DSHS about Lucas’s right to health coverage; work with orthotics experts to get Lucas the best fitting TLSO and DAFOs… and the list goes on.   When I get frustrated at how much work it is to get Lucas what he needs (while also getting Lucas to all his appointments, and doing his therapies at home, AND finding time to just play with my kid), I think about how much harder it would be for us if we didn’t speak English as a first language, or if we didn’t have the economic security that we have.

Which is why the work of Open Doors for Multicultural Families is so critical.

Open Doors supports immigrant families and families of color in King County who have children with disabilities, helping them navigate these systems and get the services they need. Open Doors also offers training to families to advocate for themselves and for their communities. Please join me in supporting this critical work!

$5: provides a transportation stipend for a low income family to attend needed parent training to better understand their child’s education needs.

$25: gives one recreational activity opportunity for a family to have fun together with their children with and without special needs to reduce social isolation.

$50: provides supplies for a parent support group of 8 parents to meet, to socialize and provide emotional peer support to one other.

$200: teaches a youth with a disability the value of working and motivate them to graduate with a diploma.

On Tuesday, May 5, you will have this opportunity to give. I am asking for your support – please plan to give anywhere from $5 to $500 to Open Doors for Multicultural Families on TUESDAY, MAY 5. Your online donation as part of “Give Big” will help us to leverage additional matching fund from the Seattle Foundation.

Will you right now:

• Mark “Give Big” on your calendar for next Tuesday, and
• Write back to me letting me know you plan to give to Open Doors?

My goal is for 25 of my friends and family to give to Open Doors, so I’ll keep emailing and calling you until I know I’ve met my goal!

TO DONATE, PLEASE CLICK HERE

Community of all kinds is so important to us – Lucas soaks up the love, and we relish the support we get so that we can keep being the best parents we can be. Thank you for joining us in supporting many, many more families of wonderful children with disabilities.

Love,

Krista

Friday marked the final official day of my paternity leave.  It was bittersweet.  On one hand I feel so fortunate to have had a full eight weeks of paid leave (thanks to my employer, the Center for Community Change), while I am also looking forward to getting back to my work as an organizer.  Few dads in this country get as much leave as I did, which is a damn shame since the opportunity to be around with a new child is huge.  (We need to do something about parental leave in general to make it more like European countries, where both parents get extended leave to be with their newborn.)

It’s been amazing getting to spend so much time with our new baby Ida, as well as extra time with Lucas and Krista.  I posted some of my favorite pictures to Facebook a few days ago in honor of the occasion, and they are embedded below as a Flickr album for those (like our moms) who aren’t on Facebook.  There are even a handful that include me.

Paternity leave began with a hike and Krista hugging a tree (baby inside); and Friday it ended with a hike and Krista hugging a tree (Ida on the outside). Of course, I don’t want to overstate the importance of this moment since I’m not going to stop devoting myself to being a dad anytime soon!  But something is going to change starting next week… and, despite the daze from lack of sleep at times, I’ll certainly never forget these last 2 months.

Having done a few recent posts about happenings in our life (and recognizing that we owe some cute baby pictures!), we wanted to use this one to revisit some of the reflections we had when Ida was in the hospital, as well in the aftermath of her early health challenges, and in general about having a newborn alongside Lucas.

As we talked about before, having Ida in the hospital was especially tough because of all we went through with Lucas at the beginning of his life: a doctor telling us (on his 3rd day of life) that he might not make it; a roller coaster 3 months in the NICU; so many tests for different possible diseases; and finally a diagnosis of severe muscle disease (MTM) when he was 5 months old.  But for me at least, there has been something else going on related to Ida’s challenges that’s hard to talk about because it’s so tied up in our complex relationship with MTM, as well as disability in general.

Based on the process we went through to get pregnant and the testing involved, we knew that we were going to have a baby girl, and assumed that she would be a typically developing child (given that MTM is x-linked and therefore girls almost never have symptoms.) So in thinking about having a second child we mostly thought about how we’d deal with a younger child without disabilities alongside an older sibling who does have disabilities.  We still knew there was a chance of having a child with special needs — there always is — and talked that possibility fleetingly, along with having general anxiety about the birth process. But mostly, we pictured a very different life and development for our second child, and actually wondered how weird it might be given how accustomed we are to Lucas and all his gadgets.

And then Ida was born… and after a mostly blissful 48 hours, we were back in the NICU.  And as we wrote about previously, there was a moment when it looked like she had defied all odds and was developing the symptoms of full-blown MTM.  Even after that possibility became much less likely, we still found ourselves scared, and even a little heartbroken, that delays, challenges, and maybe special needs lied ahead.

That reaction to the possibility of another child with disabilities feels very complicated.  On one hand, like just about any parents who are forced to encounter the medical system early on, it makes sense that we were scared about the possibility of something being “wrong” with our child.  On the other hand, we’ve always embraced difference and are so proud of all that Lucas is and has become.

That’s why I cried when I saw an early comment on the blog from Lucas’s first ever nurse in the NICU who said “She’s perfect, just like her brother.”  Because in our mind, Lucas is perfect, despite (or in part because of??) MTM.  The disease is part of Lucas, disability is part of Lucas, and even on the days when we wish that it were just a little less severe, its hard to imagine a Lucas without MTM.  Which is why we could never “hate” the disease–as we see other parents sometime express– even if we totally understand and empathize with that sentiment.  But as much as we love Lucas, having one trached, ventilator-dependent, wheelchair-using child is a serious undertaking.  The idea of two medically fragile children is mind-boggling.

Making it even more intense is that with Ida, the main issue is the same as with Lucas, albeit on very different level of severity: they both have hypotonia, or low muscle tone.  (For those who want to learn more, here’s a post we did back in 2009 that explains hypotonia.)   And though she is doing very well, both the pediatrician and physical therapist who saw Ida last week believe that she still has low tone, and that its something we’ll need to keep an eye on and which could cause developmental delays.  Or it could just go away, especially since the most common things which usually cause low muscle tone have been ruled out.

Therein lies the other reason that this time with Ida still feels hard — we are again facing the unknown.  Even as Ida seems really healthy, and we’ve pretty much ruled out the possibility that she will ever have to deal with the toughest parts of a life with MTM, there’s still a lot more uncertainty with her than the average baby.  That uncertainly is something that was often present with Lucas at this stage in his life (since we still didn’t have a diagnosis) and which we hoped wouldn’t be part of Ida’s world.  On good days, we forget all about it and embrace the beauty and wonder of our now 7 week-old baby.  But there are some days where we worry and feel afraid.  For now, at least, that is part of our reality.

Finally, there is the challenge of talking about Ida’s situation with our friends and family.  When people ask how she is doing — often with the knowledge that she spent some time in the hospital and had early health issues — we usually say that she’s doing great.  And its true!  She’s breastfeeding, starting to smile and explore the world around her, sleeping well… and she’s as cute as they get!  But there’s also this element of unknown that is too hard to explain in a brief, superficial conversation.  Plus, most people aren’t aware and/or don’t understand the implications of low muscle tone.  Which is, perhaps, one of the reasons for writing this blog post.  (And don’t worry, we’ll post some more cute pictures one of these days, too.)

There’s a lot to write about Lucas (and Ida) and what they’ve been up to over the past few weeks.  Lucas aced his powerchair “driving test” and is now well on the way to getting a powerchair of his own — even though the insurance companies will likely resist and draw the process out for months. He’s growing fast (4 inches in the last year, up to 3 feet 11 now!) leading to new challenges around transferring him, as well as a related recommendation that he begin getting infusions every 3 months to strengthen his bones. He’s been doing really well at school and finding new opportunities to interact with his peers. Oh yeah, and he’s still completely obsessed with dinosaurs.

Among the big highlights: more play dates with friends from kindergarten, including one this last Sunday with a little girl named Keelin.  It’s still challenging to figure out activities for Lucas and his friends, but mostly they don’t seem to mind… from what we hear from other parents, just coming over and being around Lucas is a big deal for the kids.  Sunday’s play date included a trip to Lucas’s favorite neighborhood “dig site” (for amateur paleontologists looking for “fossils”) and Keelin was game.

At school, Lucas is doing an amazing job with a new assistive technology set up that involves a touch-pad for his stronger, left hand, and a keyboard projected on the wall (which will eventually be a mounted iPad or similar device.)  He’s able to use the touch-pad to hover over the letter he wants to type and then tap it to make the letter appear.  There’s a great team of therapists (occupational and speech) along with his aide that are helping make it happen.  One of them sent the video below:

Lucas also continues to love being around his little sister. In fact, every night when we do “gratitudes” (ie, talk about something we’re each grateful for that happened during the day) Lucas steps in to do Ida’s gratitude for her — in addition to his own — because “she doesn’t have words yet.” It’s always something to the effect of “Ida is grateful for snuggling with me” or “Ida is grateful for reading baby books with her big brother.” It’s quite hilarious.

Last weekend, Lucas needed some repairs to his manual wheelchair so we went out to Gig Harbor, about 45 minutes from Seattle.  The repairs were quick and easy so we decided to cruise around a little in the area and then take the long way home, via the ferry boat.  Ida slept through most of the trip, but Lucas loved it… our first 4-person family trip!