A Hug from Above

Shaindel’s gone to camp!

I can’t believe that after all the shopping, packing, arranging, worrying, imagining, panicking, and mostly, anticipating… we got there.

I feel a physical sense of relief. It’s funny, because when she’s home, I don’t really feel stressed — it’s just routine. But when she’s not, I’m amazed at the sudden sense of freedom.

But let’s start at the beginning.

Fifteen years ago, Shaindel was born, a sweet, healthy baby girl. At sixteen months old, she was walking, talking, fun-loving and adorable — until she was pulled out from under water, nearly dead.

I’ll skip over the details of the ambulance ride, the three months in the ICU, the time we spent in rehab… but when it was all over, we came home with a very different child from the one we’d had before. Shaindel was a tight, agitated, helpless baby.

The next few months were spent working to get approved for Early Intervention, finding our way in the “new normal” of therapists and volunteers coming in and out of the house, learning how to take care of a child with many physical needs and how to live with a night nurse.

Shaindel is my second child, so I wasn’t busy with a large family at the time, but looking after a small one also keeps you busy, and I had a playgroup in my basement as well. Almost exactly nine months after Shaindel’s accident, I had another baby, so I was juggling a lot.

When we left the rehab center, a nurse told me, “Your new best friend will be 911.” Chasdei Hashem, despite the disabilities and handicaps, Shaindel was always very healthy — I can count on my fingers the number of emergency calls and hospital stays we’ve experienced over the years.

There are so many brachos in the challenge. We’re lucky to have an amazing school, an amazing after-school and Sunday program, and so many wonderful girls, families, and volunteers who are there to help make our lives more manageable. 

Hashem also bentshed me with an easygoing, happy nature, which makes things much easier to deal with. We find the humor in everything and laugh a lot! Shaindel also has a fun-loving personality and great sense of humor, even though she can’t speak. She loves having a good time, and we speak to her in rhymes and sing a lot of silly songs. When Shaindel laughs, everyone laughs along.

And I could write a book about the amazing hashgachah we see in our lives. Here are just some of my favorite examples:

A few years ago, I had a whole lot of errands to do in the neighborhood. I had Shaindel in the wheelchair, and my sister came along with me to push the baby stroller — and we walked around for a while with Shaindel, the baby, and the other children. 

It ended up taking longer than we thought it would and everyone was exhausted, plus it had started to rain. I decided we’d have to call a car service to get home. But how would we get everyone into the car?

Shaindel’s wheelchair didn’t fold, and we also had the stroller. I was starting to get worried trying to figure it out, and then the car pulled up next to us: a large car with a wheelchair lift!

I’ve never had that before or after. What were the chances of a wheelchair-accessible car being the one to arrive? It was such a hug from Hashem.

Another time, I was just two weeks away from my due  date, and I didn’t know what I’d do with Shaindel when I had to go into the hospital. The girl who usually helped me out with her had just gotten married, and another girl who was incredible with Shaindel was in seminary overseas. And then, the week I was due, I got a call from the seminary girl — she had a two-week vacation and had flown home.

“I know why you’re home,” I told her. “It’s because I need you here!”

And just like that, I had someone to call when I went into the hospital. She came, packed up Shaindel, and took her to her house for a few days.

Hashem truly takes care of us.

Another time, we had just begun feeding Shaindel orally. It was a stressful time. I had a bunch of little kids, and it was an extremely tedious task, waiting for Shaindel to open her mouth, counting the spoonfuls, trying not to get frustrated when most of the food came out….

Then a friend of mine called. Her sister’s friend had moved to the neighborhood and was bored — she’d always spent her time volunteering with children with special needs, but she didn’t know anyone here to help. And where did she live? Right across the street from me!

So she began coming to us every day for supper, and that was a huge win-win.

It’s happened many times that we had Shabbos plans or a simchah — and before I even picked up the phone to start making arrangements, Shaindel was invited out for Shabbos. So many times!

Those are the little hugs that keep us going. Because there are definitely challenges. Birthdays, for example, are a hard time. Shaindel is fifteen, and fully dependent for all her needs. She can’t talk, although she’s responsive and friendly, and she loves music and books and good jokes. Overnight, she’s fed by G-tube, and she has some pureed foods during the day. She’s small for her age but has grown a lot over the last year or two, so I get my share of exercise.

The thought of her growing up — and everything that means —  is a little scary. We try to take things as they come and not stress about the future.

Recently, we’ve been dealing with seizures, probably part of Shaindel’s maturation process. This made me very anxious – whenever she looks spaced out we quickly start playing music or singing to see if we get a reaction. I’m davening it’s just a passing phase.

But even though there are challenging parts for me, I always think the nisayon is really Shaindel’s. She’s locked in her body, she can’t tell us if she’s uncomfortable, and can’t share her opinion, even though she definitely has one. She can’t shoo away a fly or push a hair out of her face. She can’t tell me if she’s hungry, thirsty, tired, cold, bored, or upset. She can’t dance to her favorite music, or choose her clothes, or tell me about what happened on the bus….

One Motzaei Shabbos, I was going out to a social event for mothers of children with special needs. And I thought to myself, seriously? I just had a nice Shabbos, noshing, curled up on the couch while Shaindel was lying on the floor or sitting in her chair at the mercy of others, waiting patiently for entertainment, or feeding, or personal hygiene – and I’m the one being treated to a night out?

That’s why I’m grateful to be able to send her to camp. For me, it’s a break, but more importantly, for Shaindel it’s full-time fun and entertainment.

The first year she went, I wrote her the following poem, which is how I’ll end off:

Dearest Shaindel,

Now that the time is here and you’re actually going

My emotions, and fears, and love keep growing

There are parts of you that I wish you could leave

And others of which I don’t mind being relieved

When you scream so loud that the walls could shake

That’s definitely something you could take!

But your baby soft cheeks I will sorely miss

I would keep them in my pocket to be able to kiss

Your cute little hands that I love so much

I would put under my pillow to stroke and touch

The constant guilt as you just lay on your back

Take far away and never bring back

Your nurses I can handle being without for a while

But how do you expect me to manage without your smile?

Your excitement when Tatty comes home and takes you up to bed

Your giggling when your familiar books are being read

Your delight when you hear your favorite song —

Are you sure you must take those along?

I won’t miss the feeding and especially what comes after

But oh, will I miss the fun and the laughter

But since it’s a package and it’s all or none,

We’ll let you go because we know you’ll have fun

And we’ll be waiting excitedly when the summer is done!

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