Hospital stays

Isabella

Hospital stays are not fun, mostly because of the look on the parents’ faces. Of course, the children don’t look their best, but we expect that. The parents are so spent, eating pastries from the cart and sandwiches that foodservice brings around. Sleeping on those fold-out chairs is not restful…neither is the beeping that is happening as your child’s beside.

Fortunately, Isabella has only been in the hospital for an emergency once and that was a long time ago (though I can recall every detail quite clearly). More recently, I accompanied Isabella to overnights for EEGs. The electrodes pasted to her head are very scary looking. The gauze and subsequent cap to cover the gauze made her resemble a cancer patient. Either way, she looked very vulnerable…and not in a good way. That’s where the parental stress enters.

The three days that I spent in the hospital at two different stays were uneventful (thankfully). We woke at 6 — it’s noisy in hospitals. A really nice nurse brought me coffee daily with about 10 sugar packets on the side. I went downstairs to buy the Times. We waited for Isabella’s breakfast to see if dietary remembered that it was gluten-free. It arrived; she ate it. I read the paper. We tried to wait until after lunch to turn on the TV. Isabella almost made it. After about 2 hours of TV, I napped. I woke, went outside to walk around the hood — not particularly invigorating.

At some point the PA conferred with doctor to inform me that Isabella’s right and left side were not identical. Okay. Perhaps, she had some damage to the right side of her brain. Okay. Is that it? Any idea when this happened? Is there anything that can be done? Does this explain anything? Well, apparently this left side/right side abberation was not particularly significant. When Isabella was discharged, we were informed that she had no seizures (that’s good). What’s up with the left side/right side thing?

The hospital stay and discussion with the doctor offered zero information, really. I left tired. I came home and slept. It took two days to remove the glue from Isabella’s hair. How long with it take for someone to tell me about the left side/right side thing?

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It is what it is

I read something very interesting in Psychology Today (it’s like being in Psych 101 again). It was an article about genetic testing — a topic that interests me for several reasons. I learned something unexpected from the article (always a good thing for a jaded person such as myself). Here’s the sentence that got me: “An uncertain future leaves us stranded in an unhappy present with nothing to do but wait.”

That’s what a lot parents who have children with special needs do. Wait. Wait to see what the neurologist says (I can assure you that he or she has no clue). Wait to see what the latest test reveals (good luck interpreting that!). Wait to see what the latest intervention (eg: vision therapy; art therapy; yoga) does (at the very least: makes the parent feel  better). The waiting. It’s non-productive. In fact, according to the author: “Instead of adapting, we get chronically stressed out..” Umm…

This brings me back to what Victoria, Isabella’s sister, has said. It is what it is. Of course, as the parent of a chid with special needs, I am doing everything for Isabella that I believe will help her. At the same time, over the past year (finally, as she is 14 fast approaching 15) I have come to the realization that Isabella is a fantastic kid just the way she is.

I feel released.

Do we ever know?

Excuse this delayed post. It happened at the time by hard drive crashed and the fixers at an unnamed repair store were serving me in a smug way. So I forgot about the incident until a recent visit to the Johnson & Johnson — a friend’s boat (no relation to anyone with money, just mold).

While cruising in the Great South Bay, Isabella jumped off the boat into a very strong current. To be fair, the captain had already jumped in the water for some reason. You never question the captain, especially this one. To test the current? To cool off? To take a whiz? He did say that Isabella should not jump in, though she was poised with a properly-fitting vest on the dive deck or whatever it’s called. I definitely said not to jump. And it happened — she jumped. Several people screamed. And then I jumped.

Isabella and I were quickly swept away by the current. The boat was not as close as I would have liked. It was still light out, so that was good. At some point, though it was later, my husband jumped in the water. Because he is about twice my size, he was taken by the current much more quickly, rendering him useless in his effort to join us in the water. (On a positive note, the water was lovely.) Someone on the boat threw us a rope with nothing attached to it. Swimming back to the boat was not an an option. Eventually someone on the boat (probably a woman) drove the boat and picked us up.

Of course, Isabella had no clue that she caused several adults to become quite frightened. The captain and the first mate (his wife, my BFF) were unusually quite — until he asked what was going to happen to Isabella? No one had ever asked me that question. I had asked myself the question often, but hearing it from a friend who knew me for a very long time was different.

I don’t know what’s going to happen. Do we ever?

The other siblings

Of course, a book with the title Twin appeals to me as a mother of twins. This book is especially pertinent to me. It’s authored by the twin of a disabled (I do not like that term) twin. Um. What does he have to say? The author is Alan Shawn who happens to be the son of the former editor of The New Yorker. Okay, that probably means that the book is well-written.

The book starts by Shawn revealing that his phobias (which are many) are due mostly to the fact that his sister was shipped off to a residential living facility following a summer at camp. He as also inherited a few phobias from his father. (Aren’t all very bright people a bit off?) And he tells us several times that his father had a protracted love affair while he was raising his family. (This fact is not particularly germaine to the what happens to the other sibling theme, though it does make for interesting reading.)

The most poignant part of the book is when the writer’s literary father observes that Mary (the institutionalized twin) is a happier than they are. This is something to think about. It’s the parents who mostly suffer…and the closest in age sibling (according to the book). Parents bemoan the life that they believe that the disabled child ought  to be living. This is very far from the life that the child lives in real life, of course. Hence, the term “bemoan.” The parents are unhappy because they believe that the child is missing out.

The child, however, does not think that she is missing out. She lives in the same lovely home as her siblings. She eats the same nutritious food (and then some) as her siblings. She has relationships with the same relatives. She goes to school and has friends at the school. The school isn’t the same as her twin and only was for a short time in her educational career, but she’s okay with that. In fact, she’s okay with everything.

Once, I asked Victoria if she’s missed having a normal sister relationship with Isabella. Victoria coolly responded how can she miss something that she never had. I quickly pointed out the other sister relationships in her life, such as mine with her aunt. She just looked at me. WTF. I’ve come to believe (or pretend to believe) it is what it is.

For me, the major theme of the book was not be sure to keep your other children in the loop least they end up with the problems. It was each person in the family impacts the other. Zachary, Isabella’s twin, would not who he is  today without living with Isabella. Of course, the twin thing makes her influence on him more intense. Maybe it has something to do with being bathed in the same amniotic fluid or experiencing the exact same moments together in the womb.

You really never know how your kids will end up. In the end, you simply want them to be happy and to be loved.

Following the path

Because we have teenagers and because we live in metropolitan NY, our children have friends of all races, religions, and ethnicities. As a family, we have attended several bar and bat mitzvahs over the past years. The functions following the ceremonies have ranged from somewhat basic (none were at home parties, however) to affairs to remember (more like weddings).

What had the most impact for me was not the high-end table service and wonderful food at one event in particular. It was the bat mitzvahs of two girls from Isabella’s class that really got me. Okay, have you ever been to a bar or bat mitzvah? Learning those prayers…and in Yiddish, oy! This is no easy task for any 13-year-old. Throw in a language-based learning disability and you’ve got , well, a possible insurmountable task.

Both girls got through the prayers fine, though I have no ability to critique them. They both sounded sufficiently Jewish and holy to me. What was really truly amazing was what they said in plain English. One girl, aptly named Rebecca, was feted by her mother who told Rebecca they she learned more from her than anything else in life. Yes, I understand that. If you follow the path that your children lay, you will learn about the deeper meaning of life.

The other girl named Nina was incredible. Though neither of her parents had a mitzvah (her father is an Irish Catholic), Nina insisted on taking Hebrew classes. This child has serious fortitude and ambition. Of course, her parents obliged. The speech. I wish I could tell you more about it, but I can’t. I was crying too much. She got up to that podium and said how she knows that things are more difficult for her. Simply recognizing this is huge. Most of our kids do not moan about their challenges. (Recall, Isabella never asks why she and her twin attend different schools.)

On top of this, Nina talked about her mother’s breast cancer…and that she was happy that it was gone. Oh my God, just shoot me! To round out the afternoon, a boy with special needs with whom Nina is acquainted seranded her on the French horn playing a Beatles song. Yes, we had fun at Phoebe’s bat mitzvah, but her talk didn’t particularly move me. Rebecca and Nina’s celebrations left me feeling that our children — the one with special needs — had much to offer the world. I experienced watching their parents follow the paths that each of the girls set. It doesn’t get better than that.

Just a comment

Over the years, people (mostly friends) have made comments about Isabella. Most of the comments were not solicited and those that I am writing about were all unwelcomed. For example, years ago when Isabella was about 4-years-old, her speech-langauge pathologist (who Isabella still sees) referred to Isabella as “special ed.” What was she talking about? Yes, Isabella received private speech, occupational, and physical therapy, but she wasn’t even a student yet. Or was she? It took that comment to make me realize that I may need to consider an alternative school setting for Zachary’s twin sister. It took me about 4 more years to take action as a result of that comment.

My response is, thankfully, is not always that delayed. More recently a special needs camp director (who my mother worked with in Brooklyn) remarked that perhaps Isabella’s hair should be shorter so she could care for it herself. I did want Isabella to be more independent, but her hair was so beautiful. Her hair stylist, who is a friend of mine, resisted cutting her hair. We left the salon with a trim as Isabella’s stunning locks tangled in the breeze. I said that I’d give it a week to see how are moving went. By day 3, I called the salon.

Though it was probably more about my morning sanity than it was about Isabella’s independence. I couldn’t take it. Isabella’s fine hair ended up as a clump in the back of  her head every morning. Some mornings, I threatened a scissor, but never did it, fearing that child welfare might ring my bell. Also, and this was at the core of not wanting to cut Isabella’s hair, her hair is exquisite. It’s the kind of hair that people notice — rich color, shiny, and with a beautiful bounce. Unlike the other girls in own home, Isabella does not have a single bit of frizz. She never has a bad hair day.

And there was something else that I was thinking. Most women with developmental disabilities have short hair…and it’s not styled well. It makes them look, well, disabled. I was afraid of that. That didn’t happen. People still remark about Isabella’s spectacular hair…and as an added bonus, she cares for it completely by herself. The scissors are in the drawer and I’m happy every morning.

It takes a village

Isabella & Auntie Carla

The motto “It takes a village” was popularized by Hillary Clinton, though she certainly did not coin the phrase, nor did it apply to her life raising Chelsea in the White House.  For parents with children with developmental disabilities, it certainly does take a village or at least some awesome relatives and fantastic friends.

This does not always mean that these adults are only around when your child is in the ER because of a high fever with the possibility of a seizure. Sometimes it’s easier to be around for the emergency events. It’s very clear when they occur. What’s less clear are the  more positive events when the parents need family and friends around to share in the joy of the special needs child. Believe me, there are joyful moments and to feel the joy sharing is vital.

The fashion show at Isabella’s school is one such event. This year, every person who I invited via email responded yes. Our virgin attendees were my father’s brother and his wife — Uncle Don and Aunt Joan. It was especially meaningful to have them at our table because they have 9 grandchildren of their own…and because my children no longer have maternal grandparents.

Simply sharing the evening with my aunt, uncle, sister, sister-in-law, college roommate, Isabella’s godfather, a friend, my eldest daughter and her BFF, Isabella’s twin brother, and my husband made the joy of watching Isabella walk down that runway all the more joyful. And I have to turn away my BMF (best mom friend) and Isabella’s Annie Sullivan.

Thank you to my little village.