Spring planting

Each spring, when I was in grade school, a box would arrive in the mail, sometimes on a real spring day, warm and sunny, but usually on a cold, blustery day, practically still winter. But I knew it was actually spring because it wasn’t an ordinary brown cardboard box, it was a white box with tiny green plants printed all over, the box of plants and seeds from Gurney’s.

Both of my parents liked to garden, and my mom’s excitement, plus the fun of getting a fancy white box, rubbed off on me. I couldn’t believe that you could order a plant in the mail—well, root stock or a dormant plant—wait for it to ship from God knows where, and then plant it in the ground and watch it grow. After it sat in a box and traveled across the country. I’m still amazed.

Thanks to the coronavirus and recommendations to stay at home, people are gardening more. I placed a grocery order online the other day and on a whim searched for seeds. They had dill, that’s it. I searched another online shopping site I use a lot, and they had a few random trees and flowers, but nothing that I wanted. Our local nursery is closed, so I can’t browse there like I usually do in the spring and wonder if this is the year I can grow pansies without them going all leggy. I can’t pick out some basil, mint, and a third surprise herb because they’re a three-for deal.

But then I remembered Gurney’s. It was founded in 1866 by Civil War veteran Charles W. Gurney, and it’s still in business, now shipping from Indiana. I wonder if I’ll get my seeds in a fancy white box printed with tiny green plants.

Watermelon Man

Eliana’s occupational therapist gave her students a packet of projects to work on over the summer, and this goofy watermelon man collage was one of them.

The art project quickly moved to a lesson on jazz music.  Herbie Hancock’s “Watermelon Man” came out in 1962. Thanks to a clip of an interview on YouTube, we learned that the  memorable piano riff that starts the song echoed the wagon wheels of the watermelon man’s cart on the flagstone streets of Chicago, where Herbie Hancock grew up, and the trumpet call is the women leaning out their windows calling, “Hey, watermelon man.”

It’s a watermelon kind of summer. Last month Eliana had her tonsils removed, and her love of watermelon (wallamelon, she calls it) has done her good during the recovery. It has been so swelteringly hot and swampy, we haven’t spent much time outside since her surgery, but at least having watermelon in the fridge reminds us it’s still summer.

Summer can be tough for all kids—and parents—between the boredom, cost of camps, the summer slide. It’s especially tough for kids with special needs, as this  Washington Post article explains: The unbearable cost of summer camp for children with special needs.

This is Eliana’s second summer with the cast for scoliosis,  and once again, she can’t swim or be out in the heat too long, so that eliminates most summer camps. I’ve patched together summer plans that meet her needs, but I’ll admit it has been unbearably difficult. Trying to schedule things day to day and having no routine, figuring out if she can do a camp or attend an event and still meet all her daily needs—it wears on you. Thank goodness for Herbie Hancock and the watermelon man.

The short list:
1. Eliana has gotten sick less than a month into the school year.
2. It stinks when your kid gets sick.
3. Projectile sneezing is real.

The rest of the story:
It more than stinks when your medically complex kid gets sick. This is Eliana’s first cold with the scoliosis cast. Thinking ahead, I asked about this last spring before she got the cast. The answer: If it turns into pneumonia, they remove the cast until she recovers. Otherwise, it stinks getting a cold and having a cast constricting your torso.  (This is on top of the usual concerns of someone with kidney disease post transplant, mainly risks of dehydration or that this common cold could be a more serious illness that would cause other complications or lead to kidney failure.) In another universe, we’d be complaining about the school district not closing for Rosh Hashanah and the closings on heat advisory days. Instead, today, I’m grateful that she seems a little better and hopeful that she can go back to school tomorrow.

When we decided to try casting for Eliana’s scoliosis, I started panicking—no swimming, no baths, no sand, no getting it wet, no getting too dirty. “What are we going to do all summer?” I wondered. I started making a list: outdoor activities not involving water for days that aren’t too hot, indoor activities for when it’s hot or rainy, both nearby and farther away if we’re feeling adventurous. Let’s call it a “Dammit, we’re having fun” list. Like a bucket list, but no buckets allowed.
Yesterday was a nightmare. Scheduling mix-ups at Hershey, bugs at the playground, kid who wigs out about public bathrooms, ending with me overdoing it and lifting too much. So today was a “Double dammit we’re having fun” day. We did

Turtles all the way down

Eliana will be getting a turtle shell. What I mean is she needs a cast for scoliosis (a permanent cast from her armpits to her hips, explained in more detail here). Hank came up with the idea of calling it a turtle shell, thanks to a tiny stuffed sea  turtle she’s taken a liking to recently. There’s a history of coming up with clever names for medical devices: When she needed the leg brace, we called it her dancin’ leg. (Cue the ABBA.) Although we never did, some people name their home dialysis machines and their transplanted organs.

Eliana will be mutating into a turtle on June 12. It’s poor timing—too bad we don’t live in the southern hemisphere—but we’ll just have to try to keep her cool and hydrated this summer.

These bone and joint problems cause Hank and I a lot of angst. It’s the unknown, the “maybe this will work,” the ideopathic nature of her scoliosis… It makes me think of the phrase “turtles all the way down,” now one of my favorite sayings thanks to our turtle craze.

“Turtles all the way down” comes from a story, maybe modern or maybe based on a fable, that was recounted most recently by Stephen Hawking in A Brief History of Time:

A well-known scientist (some say it was Bertrand Russell) once gave a public lecture on astronomy. He described how the earth orbits around the sun and how the sun, in turn, orbits around the center of a vast collection of stars called our galaxy. At the end of the lecture, a little old lady at the back of the room got up and said: “What you have told us is rubbish. The world is really a flat plate supported on the back of a giant tortoise.” The scientist gave a superior smile before replying, “What is the tortoise standing on?” “You’re very clever, young man, very clever, ” said the old lady. “But it’s turtles all the way down!” 

I think I love it so much because it reminds me of the nonsense of Lewis Carroll, Jabberwocky and the Mad Hatter’s tea party antics. (Nonsense–that’s an actual literary genre. I still can’t get over that.) If you’re having a bad day, check out the Wikipedia page for “Turtles all the way down,” which has pictures and more versions of the story. If you’re day is going even worse, check out Professor John D. Norton’s logical response to the question whether it could be turtles all the way down–no, seriously. (He teaches in the department of history and philosophy of science at the University of Pittsburgh.)  

Urban dictionary says to use the “turtles all the way down” argument whenever your logic is beginning to fail. I intend to start using it with Shira and Eliana today. 

As far as the serial casting, no one knows whether it will work. It’s turtles all the way down.

 

Sad Self Care for Special Needs Moms (and One That’s Not)

Monday morning Eliana slept in like she has been recently. I forgot about labs like I have been recently. (In my defense, her numbers have been so good we only have to go once a month, so we have more leeway than we used to to schedule lab visits.)
I was so consumed with everything else on my plate, I overlooked that it would have been the best day to go this week. You know, had we all been up and ready. But instead she went to Dad’s office while I went to an appointment with the surgeon to talk about having my gall bladder removed. And then from there back to pick her up for preschool.
Removal of a vestigial organ: one of the poorest ways to practice self-care, to use of one today’s buzzwords. That and making an appointment to get prescription sunglasses, a goal of mine for the spring since mine are super glued together.
Today we went to Hershey to the orthotist to pick up her new leg brace and drop off new sneakers to have a lift put on. 
Tomorrow morning, off to labs and then Friday my actual self care: a weekend in NY with my big sister, thanks to David’s Refuge, an organization that funds weekend getaways for special needs parents. I was floored last year, the first time I went on a trip like this: two nights in a bed and breakfast and two dinners out, completely funded by David’s Refuge. I told someone recently that while the trip is the bomb, what really got me was the hosts, volunteers from David’s Refuge and people who I’d never met before, who took the time to sit down with me and tell me what a great job I’m doing. In all honesty they could save a lot of money by just calling me on the phone and telling me that once a year. I mean, I’ll drive up to NY this weekend anyway…

Well said

Lest you think we’re wallowing in speech therapy angst, here are two times recently when Eliana got her thoughts across just fine. That same day she and I were hanging out at the hotel room she waltzed over and cranked the knob on the dishwasher, turning it on. I ran up behind her turned it off, and said, “No, that’s what turns it on,” and she said, “Yeah, and also off.”

Proof we didn’t spend the whole time in the hotel.

When the begging gets rough Hank likes to pull out “And I want a pony,” a phrase he perfected when Shira was smaller and whinier, always asking for ice cream or a trip to the playground or the movies or another Polly Pockets doodad. Shira always just rolled her eyes or times when she was particularly irked you could see the little angry cloud above her head, but Eliana responded with “But I don’t want a pony.” As in, quit trying to change the subject.

Yeah, sometimes she gets her point across well enough.

It’s all connected

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We’re on a roll! We had a second family vacation last week—Pittsburgh—and it seems  all we came home with is a raging flareup of eczema, lucky Eliana.

 

The Pittsburgh Zoo and Aquarium

Now that we’re back home, I’m thinking about how her care is all connected. Take speech therapy: She’s almost caught up, according to her therapist. And yet… I’ve noticed lately that she sometimes has trouble explaining to us what she wants, she’ll say things like “Come here” and “Look at that” when she’s got a lot more going on in her head, and I’ve also noticed how much we talk about food and eating, which is another of her delays, so it stands to reason it would be difficult for her to find the right words. She’s still figuring out how to eat, much less talk about it in complete sentences.

 

An example: On vacation she and I spent one day lazing around the hotel room while Shira and Hank went to a meeting (You’ll have to ask the two of them about that.) Eliana was dragging me into the other room of the suite and saying “Come here,” and finally did the sign for eating and said “eat” so that I could understand what she wanted. So is it that she’s having trouble formulating the words or simply recognizing that she’s hungry and eating is what would make her feel better? It’s all connected.

Today at lunch she laughed and said, “You’re eating with your neck!” prompting me to explain I was swallowing my sandwich and she could see me swallowing it. The things normal eaters miss out on.

Hide-and-seek and catching up

It’s 2017 and we have a lot to catch up on since the previous blog post in September of last year. Our first real family vacation since Eliana was born.

Eliana and Shira with Sleeping Beauty at Disney World.

Progress on the physical therapy and oral feeding fronts. A bit of swimming to keep active during these dreary winter months.

A little work time carved out for me, both editing and writing. (See the Forward Sisterhood for the latest.) I won’t even mention the colds and ear infections because who wants to hear about that?

I’d rather tell you about Eliana learning how to play Hide-and-Seek—we’ve been trying to teach her every now and then the past few months, and she’s now starting to get the hang of it. The counting part she’s got down. The closing her eyes and not peaking, not so much, and the hiding part, not so much. She can’t help hopping out of her hiding place immediately to find you. Patience isn’t top of any three-year-old’s skill set, though.

We’re also working on the lingo. Instead of “Ready or not, here I come!” Eliana shouts, “Ready or not, come here!”

Eliana stepping into the zero-entry pool.

Speech Therapy on the Road

Boy, am I getting to know the GPS lady. Eliana and I have made two 45-minute trips this month to a therapeutic facility where she’s now getting feeding therapy.

If you’ve been following this blog and her health story, you know about the feeding problems kids with kidney disease and feeding tubes have. Surprisingly, support to help parents of kids who, like Eliana, are dependent on the feeding tube and don’t just figure it out and start eating by mouth on their own is hard to come by.

Especially after age 3, when a child no longer gets early intervention, good help for treating these sticky feeding problems is hard to find. This has been one of the hardest things for me to wrap my mind around because while most kids have mastered feeding by age 3, even most kids who were eligible for early intervention, those who haven’t really do need help in order to reach their potential and hopefully catch up to their peers. But instead there’s a question about whether the intermediate unit, or the school district, should bear any responsibility, or it should be addressed medically, the argument being eating is not an educational requirement. The counter argument is that a child needs to eat and drink while at school, especially once they’re in a full-day program, and it’s costly and potentially disruptive to have an aide or nurse administer tube feeds. I’m still trying to figure it all out.

Most parents address the problem by getting their child in a feeding clinic, either an inpatient or outpatient program at a hospital or therapeutic facility. Eliana finally got in one of these programs after about a three-month wait, and so far it seems awesome. The worst part is the 45-minute commute, but that’s made better because she’s OK with it and is making friends with the GPS lady.

 “Take exit 43,” the GPS lady says.

“Exit 43, OK,” pipes up a little voice from the back seat.

“Stay on rt. 22 for 3 miles.”

“Three miles, sure,” repeats Eliana.

It’s actually pretty helpful for those times I want to ask the gps lady to repeat herself. So rather than me muttering to myself about the other bad drivers, I’m now joining in on the conversation in the car.

“Continue on 83 for 12 miles.”

“Yes, ma’am,” I say.

“Yes, ma’am,” says my backseat driver.

Not only is it entertaining and helpful, I’m chalking it up as speech therapy too.