Friday, March 12, 2010

The Sleepover

Friday, March 12, 2010

Our guest blog today is about a big event in every kid’s life – the first sleepover! It’s written by Marcy White, mom to Jacob Trossman, 7 (above, with his friend Batsheva). Batsheva also attends overnight summer camp with Jacob. You can read about Marcy’s work to raise research funds for Jacob’s rare myelin disorder at Thanks Marcy! Louise

The sleepover
By Marcy White

My son Jacob, 7, had his first sleepover on the weekend. It was at a girl's house. Her parents were away for the weekend. And he had a great time.

Jake is not like most boys his age and can't do what most kids do. My little boy has Pelizaeus-Merzbacher disease (PMD), a disorder that affects all the nerves in his body. He can’t sit by himself, he can't speak and he can't use his hands to push a toy truck. But he understands conversations and has a wicked sense of humour. Physically, he is severely challenged. Cognitively, his sharp mind is trapped inside a body that doesn't work the way it should.

My young son with a smile that lights up his entire face has few friends his own age. Taryn, a girl 10 days his junior, is Jake's girlfriend. This incredible blond-haired girl with deep dimples on both cheeks donates all her tooth fairy money to PMD research so she can help find a cure for Jake's disease. Jake cracks up with laughter when she leans over to kiss his eyeballs. Another friend is Harry, a little boy who is seven-years-old and in the same class at school. Like Jacob, Harry is in a wheelchair and cannot speak. When both boys are placed on a mat on the floor, they hold hands and laugh together. When Harry's name is mentioned at home, Jacob grins.

But the majority of Jacob's friends are older girls—teenage girls—affectionately known as Jacob's Princesses because they always wear the long skirts favoured by orthodox Jewish females. These girls take turns holding my son and dancing with him. They complain about “Jacob withdrawal” if they don't see him for a week. So when one of them invited him over for a sleepover at her house, I immediately said yes.

Late Friday afternoon, with Jake's clothes, medications and liquid nutrition packed, his wheelchair and IV pole crammed in the back of the van, we set off for his latest adventure. During the car ride to his friend's house, I explained to my son that he was going to stay there for Shabbat (the Jewish Sabbath which runs from sundown Friday until after sundown on Saturday) and I would come pick him up the following evening. The smile on his face assured me that he was excited about this new experience. As I carried him into Batsheva's house, her warm embrace welcomed Jacob and allowed me to leave without a murmur of protest from my son.

Back at home, my house seemed different. It was quieter without Jacob. With both my daughters in bed by eight o’clock I realized that this was the first time since Jacob’s birth that I would be able to lounge around in my pajamas before going to bed. Emily, the night nurse, would not be arriving at 11:30 to tend to Jake's needs during the night. This would be the first time in almost eight years that my entire household was asleep at the same time. It was a normal situation for most families, but felt strange and unsettling to me.

The next morning was surreal. My typical Saturday craziness begins at 9 a.m. when Emily leaves. Within minutes, Jake is screaming and everyone is hustled into the car for a few hours of driving and time-wasting errands to Home Depot or Wal-Mart, until it is time for all the kids' swimming lessons. This particular Saturday was more serene. We stayed in bed and watched cartoons on television until mid-morning and gradually made our way to the pool in time for the lesson. It was a pleasant way to start the weekend.

But again, it didn't feel right. Jacob wasn't with us.

As the day went on, I noticed how quiet my house was. I wasn't glued to the clock to make sure I didn't miss a medication dose or run out of bibs for my chronic drooler. There was an element of tranquility in my home, a word that isn't usually used to describe our abode. But the calmer my life became, the more agitated I felt.

My mind kept drifting to thoughts of my son. I wondered if Jakey was having fun and what he was doing. Because he was celebrating Shabbat with his friends and the Sabbath rules dictate that they could not use the telephone, I was unable to get an update. As much as I wanted to, I could not get in touch with him, short of showing up unannounced at his friend's house. I reassured myself that he was in capable hands and if something terrible happened, surely I would be notified. I felt helpless but was trying to be strong so Jacob could have this incredible experience.

At 7 p.m. I went to pick Jacob up from his adventure. As I hurried up the front stairs and waited at the door, my heart beat hard with apprehension. Questions were swarming around my brain: Was he able to sleep in a new bed? Did he wake up scared and unsure of where he was? How was his day?

When the door opened and I saw my gap-toothed son sitting in his wheelchair in the middle of the living room, my racing heart slowed. When I was close enough to ruffle his thick hair and give him a big hug, I knew that he’d had a wonderful time.

My son had a sleepover at a friend's house. He had a fantastic time and by all accounts did not miss his mom. I, on the other hand, missed him terribly. But despite my internal struggle with his absence, I know I did the right thing in letting him go. Jacob has many medical issues that make his life more challenging than most. But he deserves to have regular childhood experiences and I will do whatever I can to facilitate them. Now if I can figure out a way for him to try waterskiing...

Monday, March 1, 2010


We were invited to Yaffi's house for Purim - all 5 of us. And we went. All 5 of us.

This might not sound unusual for most families, but for us it was a rare occurrence (being invited for Purim was a first for us too, but that's another story). And the stress leading up to the dinner was not insignificant.

Although a bit shy at first, Jamie and Sierra were great. I was not worried about how they would act, I knew they would love being around so many princesses. All it took were a pair of gigantic lollipops and lots of girls, their age and older, in beautiful dresses and they were having a ball. They were too busy to sit at the table and eat dinner because there were so many girls to play with.

Jacob, on the other hand, was a different story. His behavior in unfamiliar surroundings can be cause for concern, to put it mildly. In fact, if there are a lot of strangers and noise, Jacob's behavior is quite predictable - he screams. He screams and screams until his hair is soaking wet, his face is red and everyone is extremely uncomfortable listening to his heartbreaking cries. Then we go home and those who stay behind breathe a sigh of relief at the welcome silence and feel sad that Jacob did not enjoy the event.

When Yaffi invited us to her house to join her family for Purim dinner, I accepted. It never occurred to me to leave Jacob at home, but I did wonder how I could best prepare him for the anxiety that usually accompanies him to parties.

I told Jacob about Yaffi's invitation and asked him if he wanted to go. He said yes. I decided to bring Leazel, one of Jacob's nurses, along in case he needed to go into a quiet room away from the commotion or if he wanted to go home early.

As we were getting everyone loaded into the car, he started crying. Within seconds Jacob's cries escalated into full blown wet-hair-red-face screams. But we carried on. He screamed the entire drive to her house. We stood outside her house for a full ten minutes waiting for Jake to calm down before descending on Yaffi and her family, even though we were already late.

Standing outside the door, waiting for it to open, I silently hoped the evening would go ok, and that Jacob would stop crying.

Yaffi opened the door, saw and heard Jacob, bent down and spoke to him the way she usually does - as a typical 7 year old. And he stopped screaming.

I don't know exactly what happened next, but while everyone was sitting at the table, Jacob was there too, at end with all the kids. Partway through the meal, with the girls playing with their new friends and the adults still enjoying the incredible and countless dishes placed along the large table, I noticed Jacob sitting next to Yaffi at the table with us. He was happy, as evidenced by the enormous grin on his face. At one point he was playing with the balloon he was holding, laughing every time it escaped his grip and floated to the ceiling. He actually joined us at the table. And he was having fun, even when the conversation wasn't directed at him. He was watching us, listening to the conversations and really enjoying being part of the festivities.

Every time I looked over at him and saw him sitting across the table from me, I felt so proud of him. I don't know what Yaffi said to him, or what it took to get him comfortable, but this was the first time he spent an extended period of time at the table with anyone. And he was surrounded by people he had never met before.

Later that night, when Jake was in his pajamas and ready for bed, I asked him if he had fun and he nodded his head yes. I told him how proud I was of him and that I was so happy we were able to have this wonderful experience together.

Purim is my new favorite holiday.