Date: Saturday, July 16; 2016
Time: 7:30 am
Setting: Lerner household; Master bedroom; Daddy’s side of bed
Eliana <cheerfully and with excitement>: “Daddy! Out of bed Daddy!”
Daddy: <who had heard her coming and had a chance to clear his throat in order to sing>:
“Happy Birthday to youuuu!
Happy Birthday to youuuu!
Happy Birthday Eliaaaaaaannnnnnaaaa!
Happy Birthday to youuuu!”
Eliana <smiling broadly and holding up several fingers>: “Fhee!” (See here for alternate pronounciation)
Eliana gets mounds of mail for an almost three year old–some of it addressed to her, not her parents or guardians, which still throws me off because isn’t it illegal to open someone else’s mail?–most of it mind-numbing insurance and medical papers, but occasionally something insightful, like the copy of the report that came in the mail recently from her evaluation for services through the intermediate unit.
The county intermediate unit (IU) is the next step after early intervention, the in-home birth-to-three program for kids with developmental delays and disabilities. Next month Eliana will reach the ripe old age of three and graduate from early intervention. Unfortunately, there’s no ceremony with little caps and gowns, and she doesn’t get to march down the aisle to Pomp and Circumstance and get a tiny diploma. Worse yet, there’s no not graduating, since it’s based on age, not meeting educational requirements, so while her therapists would love to keep working with her, she’s aging out.
The IU therapist who evaluated her wrote in the report that Eliana was “intermittently intelligible to this novel listener.” While I was amused by the typo saying that Eliana ate cheetahs, imagining her on a big-game hunt in Africa rather than crunching Cheez-Its on the couch, Hank latched on to “intermittently intelligible,” and it’s become our new catch phrase. I mean, aren’t we all at best only intermittently intelligible? I even suggested we consider renaming the blog.
This week I came across a therapy facility in a magazine and called to see if Eliana could get in there. I had a long conversation with the woman who answered the phone, and one of her questions was what’s Eliana’s diagnosis. I rattled off the name of her syndrome, mentioned heart defects and scoliosis, and by the time I got to the fourth diagnosis I paused, said, “Uhhh…” and started laughing at myself for being intermittently intelligible.
Communicating is actually really hard sometimes when you’re a special needs parent. You never know what the other person knows. I belong to an online group of moms whose children have heart defects, many of them much more serious than Eliana’s, and half the time I don’t understand the posts, between the acronyms for diagnoses she doesn’t have and the different procedures and treatments. Even among a group of peers, we’re only intermittently intelligible.
Back on the phone, I immediately regretted laughing and hoped the woman understood I was laughing at my own faulty speech, not the long list of diagnoses. Thank goodness the person on the other end of the line happened to be another special needs mom who simply said she’d love to give Eliana a hug. Guess I got my point across.
Little-known Father’s Day fact: in order to be a father, you first need to have kids.
So in honor of Father’s Day this year I want to talk a bit about Shira, who first got me into this whole fatherhood thing 11 years ago. She keeps growing up – as kids tend to do – but for some reason things seem to have sped up these last few weeks.
It all started for me at a Daddy/Daughter dinner in McDonald’s a few weeks ago (don’t judge – my first “date” with Amy included dinner at Wendy’s). Maybe it was when she ordered the 6 nugget kid’s meal, or how she confidently told me where we were going to sit instead of letting me pick. But whatever it was, instead of eating with my kid it somehow felt like I was eating with an actual person who just happened to be my kid.
Fast forward to her gymnastics show. This year she decided to move to “urban gymnastics” – climbing walls, jumping over stuff, and all that. Think a very light version of American Ninja Warrior. It’s a “coed” class…by which I mean it’s a half-dozen boys plus Shira, and sometimes that wasn’t easy. But during the classes and then at the show you could tell that she was really focused on doing well and enjoying herself. Y’know – actually listening to the instructor and trying to improve instead of just throwing herself at a wall. Quietly, and without making a big deal of it, she kicked those boys’ butts on most of the exercises. Think the crowd may have noticed, too.
Then her recent piano recital, where she showed such poise in her awesome performance. The last two years with her prior teacher the recital was done on a small upright in a church basement. This year she played a baby grand raised up in the center of a large sanctuary, complete with lights and microphones. Others might have been nervous, but she totally crushed it.
Yeah she did.
Watching her practice and then play the recital pieces you could see all the details coming through – adjusting hand positions, working the pedals, powering through any little mistakes. Somewhere in there she transitioned from “I take piano lessons” to “I play the piano.”
Then in just the last week or so it feels like she’s grown so much as a big sister to Eliana (I had to mention her once, OK?). No doubt that’s been hard with the way things have been for the past 3 years, but evidence suggests she’s got it down pat. Riding the rides with her at Sesame Place, exploring Hershey Gardens, helping her float in Grandpa John’s pool – even just picking up the slack when Amy and I want to wring Eliana’s cute little neck – she’s definitely hitting her stride there too.
So with all that let me just say “Happy Father’s Day, Shira. I couldn’t have done it without you.”
Because of an organ donor, Eliana can giggle with her sister under the covers.
Because of an organ donor, Eliana is learning to ride a tricycle.
Because of an organ donor, Eliana is.
This was Eliana one year ago this morning waiting for surgery to get her new kidney.
And Eliana running around today at Wildwood Lake.
Last month Eliana got a leg brace that we hope will straighten out the bowing in her leg. We call it her “dancing leg” and she’s really taken to it well. (That is to say she leaves it on if you can sufficiently distract her from that cool invention we call Velcro, and she can even get around pretty well, thanks to the bendable knee part.)
But, I told Hank, it seems like another NJ tube: The NJ tube was the feeding tube that was taped across Eliana’s face and snaked down her nostril into her intestines. It was a clear sign to strangers that there was something wrong with this baby. And although we saw past it, we were never sure who else did, and it was always a surprise, among friends, family, and strangers, who’d be OK with it.
We spent a lot of time outside playing on the springlike days we’ve had recently. Shira’s been learning about the different Native American tribes and how they lived and she likes to gather sticks and put them in her wigwam. When the three of us were out in the yard last weekend, I kicked aside a big stick as we were trooping around three abreast.
“Hey, that’s my stick,” Shira yelled.
“Ugh, they’re all your sticks,” I replied and the conversation devolved into what was Eliana’s in the yard and what was Shira’s, ending with Shira declaring, “I call the world, you get Mars.”
That was the best part of the day, so wonderfully ordinary. That bit of “I’m the big sister and my way goes” juxtaposed with the little sister who’s clueless that there even is another way and isn’t the big sister’s way best?
Have you read the article “Welcome to Holland?” It’s a short, metaphorical article that Emily Perl Kingsley, a writer for Sesame Street, wrote about having a child with a disability. You plan a trip to Italy and then–bam–end up in Holland.
Shira’s dig about Mars for Eliana immediately reminded me of “Welcome to Holland.” We’re already in Holland. Let’s set our sights on Mars.
You know the saying “The world is your oyster?” As much as I hate Shakespeare (It’s from The Merry Wives of Windsor) it’s a fitting phrase for any parent, especially one whose child has challenges.
I wonder if they have oysters on Mars? We’re up for the journey; I guess we’ll find out.