Isabella & Victoria
Recently, we dropped off Victoria — Isabella’s big sister — at the Broadway Conservatory for a 2-week program. That means that she will not be able to accompany us to the one and only visiting day at Isabella’s 7-week camp. We haven’t mentioned this to Isabella. She will be expecting Victoria. Whenever Victoria was away for a school trip — for as little as one night — Isabella is not right.
The two share a room, which Victoria complains about on occasion. Like any other little sister, Isabella will go through Victoria’s stuff. The way I see, Victoria leaves her stuff all over the place. It’s there for the messing. Isabella does not goes through Victoria’s closet. Though they are only 2 1/2 years apart, they do not share clothes, discuss boys, or style each others hair. Victoria does that with her girlfriends. Isabella does not do that at all, except discuss boys during a social worker-facilitated girls’ group in school. That’s a bit different.
They share parents, a brother, and most of all a home. That saying — “Home is where the heart is” — is somehow more true.
Twins' Birthday Celebration 2008
For the first time in 16 years (if you count their birth), Isabella and Zachary were not together to celebrate their mutual birthday. Isabella celebrated her 15th birthday at camp, while Zachary celebrated (just barely) at home. I offered to bring him and a few friends to Rockaway Beach or Coney Island. He said thanks, but no thanks. At the end of the day, we asked him with he wanted — a cake.
OMG. I didn’t have a cake. The morning were getting ready for Isabella’s camp, I thought about her birthday, which was three weeks in the future. My sister Carla (knowing that I would not have everything ready) came over. She immediately stepped in to help. I was concerned that Isabella would not have a proper birthday cake for camp. They’d have a cake that she wouldn’t be able to eat. What’s the fun in that. So Carla baked a gluten-free cake for Isabella. I found cardboard discs to store the cake and put them in the car to cool on the ride to camp. We had the icing in a separate container and asked the camp director to freeze the cake layers and put it together for her birthday.
Isabella Celebrating at Camp with a Homemade GF Cake
Weeks before my twins’ birthday, I collected gifts to send to Isabella — an American Girl magazine, a puzzle, a dress, Katy Perry stuff, a few treats. Before I left on a business trip, I instructed my husband to mail the thoughtful gifts to Isabella. Victoria went into work late the morning of Isabella’s birthday, so she could give her birthday wishes on the phone at the pre-assigned time. A lot of thought went into Isabella’s birthday.
Zachary, her twin, who was home with us for his birthday, was another story all together. I did not bake him a gluten-free cake (nor did his Auntie Carla). At 9 pm, my husband and I rode our bikes to Ben & Jerry’s for an ice cream cake. The only ones available served 25. We ran into some friends (not random, our families are close, really!) and invited them to celebrate. I left it to Zachary to invite his friends. He showed up with just a few guys following the Harry Porter movie. After everyone left, he wondered aloud if he’d be getting any presents. (He certainly observed the cake baking and gift pile for his twin.)
Zachary Celebrating his 15th Birthday at Home
OMG. Presents. We did not have a single present for Zachary. I panicked. I told a white lie, saying that his birthday gift was in the mail. “What was it?,” he justifiably wanted to know. How should I know? I hadn’t ordered anything. Yikes! Bad mommy. Luckily, I was at the High Line this morning and passed an Apple store — an iTunes gift card would do the trick.
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.
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.
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.