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.

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.

Separate Birthday for Twins

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.

Sleep-away camp

Ready for Horseback Riding at Camp

It was a very big deal for us (as parents) to make the decision to send Isabella to sleep-away camp. Last summer, she went for two weeks with a girlfriend from school (read: built-in safety net — that’s good for the child, but mostly the parents).When we went to pick her up to come home to attend a family function, she asked to go back for another two weeks. We obliged. This summer we wanted a camp with more academics. We found one, but the only option was 7 weeks. Yikes! Isabella’s response: “Seven weeks is a long time.” Yes, it is.

It felt like diving into water that you know will be frigid, but it’s a hot, humid day. If you want to cool off, you have to do it. If we wanted Isabella to get a more academic experience (preventing regression), while encouraging independence, we had to go for the 9-week sleep-away camp. It has been three weeks and today is Isabella’s 15th birthday. It’s certainly not were I expected her to be at 15 when she was born or even when she was 5. Here she is nevertheless — loving it, learning, and getting those wings that she (just like every child) needs.

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.

Learning through fear (the parents)

Today marks the fourth time that Isabella has gone off on her own unexpectedly. The first was probably the most serious. She was just four years old and had just learned to use the bathroom. She was with my sister at a street fair. Yes, a street fair — every parent’s nightmare locus for a missing child, perhaps only second to a mall. (Isabella became lost there once several years back while on my watch.) At the street fair, she was looking for a bathrrom. After jumping up onto vendors’ tables and screaming her name, I found Isabella crying in a one of those stinky portable bathrooms. She was wet and very frightened. That was the only time she had any fear when she separated from the adults that accompanied her.

The mall incident was typical. Isabella saw something that she liked in a store, so she went in to check it out. After my panic subsided, I figured which store she would like and found her immediately. She wasn’t gone long enough for me to involve mall cops. The time before today happened while she was scootering. My husband took her out scootering for exercise. They both scootered. Isabella, who once was not able to master the coordination required, has become quite proficient and fast. At some point, she scootered ahead of her father. The police got involved. She was missing for over an hour. She had scootered to the location that was planned. It required no street crossing, but was far from the start point.

Today, was a very different. After occupational therapy each Thursday, Isabella takes the elevator down four floors and meets me in the car. We drive home. This time, her father was picking her up. He wasn’t there after she got outside. She wasn’t there when he arrived. My husband called me. I was out with my older daughter. I called the police and ran home to get my car keys.

Isabella’s school backpack wsa on the kitchen sofa. For a moment, I couldn’t understand how it got there if she was dropped off at occupational theraoy immediately after school. I called her name, she answered and came downstairs. What happened? No one was there to pick her up, so she walked home. Other than walking to the mailbox and grocer around the corner from our home, Isabella has walked no where in our town. This place is really far from our house. I only drive there, espically on very hot days like today.

This means that she had to pass the home of her speech therapist, which is close to our home, requiring her to cross three streets. Today, she crossed many more streets (I do not want to count). We had been considering allowing her to walk home alone from speech. I guess she’s ready.

Normalcy

In December we had a PICC line put into Isabella’s left arm. Such lines are meant to be convenient to deliver medication or nutrients. People who have cancer may have PICC lines or ports. Children and women who have veins that are difficult to access have these delivery systems put in. The surgery is minor, but the upkeep can be nerve-racking. The site must stay cleaned and the line must be flushed regularly. Showering is tricky and swimming is forbidden. Though convenient for drug delivery, PICC lines are not a breeze.

Immediately after the line was inserted, I expected to have Isabella start a weekly regimen of nutrients. That did not happen because one of the key nutrients was not available. So, here she was with this line that needed to be closely monitored, but it wasn’t getting used. Two days after the procedure to insert the line, I left on business. I called home on the day that I was leaving to visit a friend in Key West for a day. Isabella had a high fever. She never got sick. A friend with a special needs child convinced me to continue with my plans and go to Key West. Isabella was in good hands at the hospital. I went to Key West. It was the coldest day of the year.

The nutrients didn’t arrive until after Christmas or New Year’s. Whenever it was, I was not able to administer the nutrients during her holiday break. I found that very frustrating. At some point, she received infusions twice weekly. Following each, I was emotionally and physically exhausted. She was fine. Over the months that the PICC line was used, we had to wait for syringes, nutrients, and IV-ready glucose water. It was like a work slow down.

I was spent. Isabella had been receiving the infusions on Sundays, so the day was pretty much shot. Each infusion took at least four hours. It required a lot of attention from me. Isabella was totally cooperative, watching movies or doing her repetitive needlepoint throughout the infusion. At one point when I thought we’d start up again, Isabella was scheduled for her 2-day EEG. I was exhausted again.

My husband and I spent an overnight on a ship. We left our children home and asked my sister, who lives around the corner, to check in. Our ship arrived back in NY on Mother’s Day. Our children took the ferry into Manhattan and we had brunch at The Standard under the High Line. It was lovely. We drove home and did nothing for the remainder of the day. In the evening I remembered that Isabella’s PICC line should be flushed. I unwrapped the bandage. Nothing was there, except a rash from the adhesive and a small red spot where the line had entered her arm.

As my husband looked through the garbage looking for the line that had been in her vein, Isabella got upset and her brother looked panicked. We found the line. It appeared whole. We went to the ER. On the way I asked Isabella why she pulled out the line. She replied, “I want to be normal.” Me too, Isabella. Me too.

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?

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?