Tag Archives: family

Visiting Day

Isabella on Visiting Day

Isabella would be at camp for nearly four weeks when visiting day finally arrived. I had prepared for this day practically from the day that she had left for camp. I marked it in my calendar (paper for me). I started a pile of items to bring to her at camp. I pleaded with Victoria’s conservatory to allow her to leave for the weekend, so she could join use on the visit (The answer was no, unfortunately.) I informed Zachary that he would need to awaken before noon the morning of the visit. I had evidently done everything except read “the literature” thoroughly.

The day prior to the visit, which happened to be 115 with the heat index, I journeyed to Rockaway Beach with my BFF Kathleen. Upon arrival, we ate at Rockaway Taco on the boardwalk and then went in the murky water for a dip. It was surprisingly cool under our Marimeko umbrella, so Kathleen took a nap. I scanned my phone and noticed a missed call from a 570 number. Panic ensued — 570 was the area code of Isabella’s camp. I had had a nightmare that I missed visiting day! Was it happening? My head began to spin.

The message went something like this: “Laura, no emergency. You indicated on the form that you would pick up Isabella at 1 pm and she has been waiting for you.” Click. I called. I had not missed visiting day, but we had indicated on the form that we would pick up Isabella at 1 pm. That was an option? Yes, parents have been picking up their children since 10 am. What? The response went something like this: “You obviously did not read the literature.” If it were a Woody Allen movie, the unspoken would say: “Bad mommy.”

I got on the phone and found a hotel nearby. Kathleen and I quickly packed up our gear. I called my husband Stephen and asked him to call the camp to say that we would pick up Isabella at 9 pm. There was an hour wait at the Hudson River crossings to get home to pick up the rest of the family. Then, I accidentally called the camp. The conversation on the camp’s end went something like this: “I already told Isabella that I made a mistake and that you are coming tomorrow. She’s fine and looking forward to the dance tonight. Why bother if all you are going to do is check into a hotel and go to sleep!” (That was a rhetorical question.)  My response: “But I’m not okay.” The camp director: “Well, that’s your problem.” Ouch.

Next stop: a bottle of Prosecco.

The next day, we were the first family to arrive (that has never happened). We waited for Isabella. When she spotted us, she ran down the steps and cried. I cried. I think my husband may have cried, too. We were happy to see one another and had missed each other a lot. She loved camp. She assured us that she could make it another three weeks.

The four of us got in the car and drove to a nearby lake. Though we are an ocean family, we really did not care where we were. We were happy to be with Isabella — even if only for four short hours. (It felt like a generous prison visit, though I have never visited anyone in the joint.) We gave her a choice between a boat ride or dinner. As she is my child, she chose dinner. We sped 30 minutes away to Bar Louis in Milford. It was a lovely afternoon.

After dropping her off at her cabin, we met with the director. At that point, my tail was no longer between my legs. (I had avoided her on the pick-up.) We were planning to pick up Isabella on the last day of camp. I wrote in my calendar. Just in case, I inquired about the date. It was the day before the date that I had written. Um, once again my mother was right — reading the directions is very important.

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Sisters

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.

Graduation — a milestone

Isabella’s first request for her graduation from the Banyan School was Aunt Joan and Uncle Donald’s attendance. Since her grandparents are no longer with us, Isabella (and the rest of the family) has looked to my father’s brother and his wife as our wise elders. It’s a reminder of the importance of the generational connection. I was lucky enough to have four grandparents until I was 16. My paternal grandfather passed away only seven years before his son, my father. He was a vital force in the lives of all 12 of his grandchildren.

The graduation went off without a hitch. Each graduate was seranaded with words from the director or the principal of the school. What stuck out for me was that Isabella was the only student referred to as queen, as in Queen Isabella. Yay, that’s my girl! She and her sister Victoria both have names that once belonged to queens. So, why not think of yourself as one. I had no idea that Isabella’s school thought of her the way that we, her family, do.

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.

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.

The future: the unknown

Isabella & Zachary 2005 001Each morning Isabella gets picked up by a van to deliver her to her school. The time that transportation arrives varies daily. We try to be ready at the same time each day. Sometimes, but not often, Isabella waits on our stoop. We usually leave the front door open and she yells in to us or runs back in to give me a kiss good-bye. (I get kisses good-bye from all my children every single day.) This morning Zachary got concerned. What if a stranger came by and picked up Isabella. I said that wouldn’t happen. Isabella wouldn’t leave her stoop to go in a vehicle with an unknown person. I asked Zachary if he was worried about Isabella today or for the future. He said, for the future. What will happen to her? Will she be able to live on her own? We really don’t know the answer to that question. We simply move forward believing yes, she will be okay.

Going to the country

PA120043My kids used to love going away with the family. The novelty wears off when you reach the age of teenhood. That makes me sad. I’m still in mothermode and my kids are moving into young adult mode or they seem to think so. You know, the perks of adulthood without the responsibilities. Isn’t that what we all long for? I still have one kid who enjoys the weekend excursions. Good for me, but not so great for her.