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 www.curepmd.com. 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...

Purim

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.

The trials of being my son's mother

With his nurses, caregivers and friends he's charming and lovable. With me he's angry and inconsolable

Marcy White

From Monday's Globe and Mail Published on Monday, Nov. 30, 2009 12:00AM EST Last updated on Monday, Nov. 30, 2009 6:28PM EST

As Jacob and I make our way down the crowded aisles at the grocery store, I am acutely aware of strangers glancing at us. They see a mother and son shopping together. But we stand out because we are different.

Jacob can't sit or stand without support, so I can't secure him in the seat at the front of the cart, or have him stand at the end, holding onto the metal basket as I push a food-filled wagon through the store. Instead, we make our way down the aisle with me pushing him in his wheelchair and him balancing our selected items on his lap.

Like many kids his age, Jacob does not enjoy this errand. As soon as I stop pushing him to grab an item off the shelf, he complains. Jacob knows what he wants, but unlike his peers he can't run ahead and explore on his own. This frustrates him, so he screams. As I try to console him, he screams louder.

While many parents can treat their little helpers to a candy or a bag of chips at the end of a shopping expedition, I don't have this reward at my disposal because Jacob can't eat.

My seven-year-old son has Pelizaeus-Merzbacher disease, a rare neurodegenerative disorder that affects all aspects of his life. Jacob cannot sit by himself, walk or speak. He is fed by a tube that was surgically implanted into his stomach when he was an infant. But he understands what is said to him and loves listening to silly jokes.



Ever since he was born, Jacob has had a special effect on people. There is something intangible that draws people, and makes them fall in love with him. Year after year, I have watched my son attract people to him and melt their hearts with his infectious laughter and mischievous grin.

But when they leave, he changes. He screams, he protests and he cries. Gone is the charm, the lovable smile and the twinkle in his green eyes. I am left with an angry little boy who is inconsolable. Why can't I elicit the same wonderful qualities that his nurses and friends do so effortlessly?

I am in charge of Jacob's care, his schedule and his endless appointments. I am the one who accompanies him to the doctors he hates. I am the one who holds his hand and walks with him in the hallways of hospitals while we wait for hours for the dreaded visits.

I feel like a nasty mother who allows therapists to subject him to painful and difficult exercises. It's no wonder he prefers his caregivers whose main goal is to entertain and please him.

As Jacob's mother, I know he is receiving the care he needs. His frequent screaming in my presence is purely behavioural, designed to manipulate me into giving him what he wants. My heart beats quickly as I run through the list of things that might calm him down, like chasing our cat Spot, helping him strum his red guitar, reading a book or telling him a story.

When nothing else works and I am at a loss for what to try next to quiet his screams, I resort to the phone call. At this point, Jacob has been yelling for so long and with such vigour that his face is red and his hair is so wet he looks like he just had a shower. Listening to his favourite person, Belle, on the telephone is a guaranteed mood changer. It's the one thing that will always calm him down and make him smile.

In my weaker moments I feel sorry for myself. I am upset that I can't soothe him. I am his mother; I should be his favourite person.

When the crisis is over and peace has been restored, I look at my curly-haired child and know that his behaviour, in some way, is typical for any child.

Most parents will agree their children behave better with those who aren't their parents. And Jacob, in this respect, is a regular child. Intellectually I know this, but it hurts. It's heartbreaking to witness someone else pacify my child, something I repeatedly try but fail to do.

Compared to Jacob, his healthy twin sisters are easy to parent. At 4½, they are typical children. When they are upset or hurt, they run to me. They get angry when I go out and leave them in the care of someone else. As their mommy, I can make everything better. My kisses fix their boo-boos and they love it when I play with them. Why can't I fill the same role for my son?

I try.

In September, after a stressful doctor visit, I brought Jacob with me to buy a coffee. He enjoyed sitting on my lap, watching the cars drive by the store. It has become our special outing, on our way home from an appointment or when we have a free hour on the weekend.

I look forward to these moments of quiet and peaceful interaction with my son. When I ask if he wants to come for coffee with me, he smiles and slowly nods his head. My heart expands and I feel a whoosh of love for my little boy.

It is hard being the one he associates with dreaded appointments. It is challenging to find things Jacob likes to do with me. But I will persist because I love spending happy times with my son. I will keep trying to be the one he wants when he is sad. Because I am Jacob's mom.

Marcy White lives in Toronto.

Illustration by Steve Adams.

Jacob's Soul

I've been told that Jacob is a "pure neshama" or pure soul but didn't really understand what that means. I was given the following explanation and thought that maybe, on some level, it makes sense. You can make your own assessment:
G-d's Handicapped Children

(IsraelNN.com) Question

A friend gave birth to a baby with a rare condition that has rendered her severely handicapped. She is not expected to live much past her tenth birthday I can't understand why G-d does that. If life has a purpose, what's the purpose of such a short sad life?

Answer

Every birth is a gamble. A soul enters the world innocent and pure. But it may not stay that way. This world is a maze of diverging pathways, both good and evil and the choice is ours which way we go. Once a soul enters a body, it is free and therefore vulnerable to corruption while acts of good elevate the soul. Every act of evil makes a blemish on the soul.

Some souls are so pure it simply isn't worth the gamble These souls are too precious to risk being compromised by life in a body. They are too high to come down to this world. But the other option, not to be sent down at all, to never reach this world, would mean that we would miss out on meeting these holy and lofty souls and hearing their message.

So these souls do come down. But in order to be protected from the potential evils of an earthly existence, they are sent down into a body that will not compromise their holiness. They enter this world in a form that is above sin above evil. From a purely physical perspective we call them disabled or handicapped. From the perspective of the soul, they are protected. They will never sin. Their sojourn in this world is often brief and, in terms of this world, may seem sad. But they have retained their purity. And they have fulfilled their mission.

These special souls remind us that true love doesn’t need a reason. We often love others for what they give us. We love our children because they are cute, smart and high achievers; we love our spouse for the pleasure and contentment they give us; we love our parents because they care for us. This is love, but it is not pure.

When a child is born that will never achieve worldly success, cannot provide the usual source of pride for her parents, all extraneous reasons to love her fall away and what’s left is the purest love that there can be. These children are lovable not because of what they do for you, and not because of what they will one day become, but simply because they are.

These pure souls remind us what love should be. Only such a pure and holy soul can elicit such a pure and holy emotion. We can only stand in awe of them, and the parents and friends who care for them. And we can only thank them all, for giving us a glimpse of what true love really means.

A fantastic experience

How can I properly thank Jacob's princesses for giving him the most incredible experience of his life?
By all reports, including his, he had the best 21 days imaginable. Every picture I saw (and I'd love to see more!) showed him smiling. And the smiles were different from his regular grins - he had a more relaxed look about him, something I can't quite explain but do notice.
Heading up to camp I was pretty sure he'd have fun. Daily doses of Bracha, Shoshana and Batsheva would ensure a happy time. But he had more than fun. Not surprisingly, he added quite a few princesses to his harem and loves being the center of attention (my son is not shy!).
I was thrilled when I heard he also made a friend, a boy around his own age. I was told that Nosson and Jacob were inseparable. Jacob frequently joined Nosson and his family at meals, and when his parents wanted to locate him, they simply had to find out where Jacob was.
When we drove up to get him at the end of his camp stay, Andrew put Jake's things in the car and we were ready to go. But his princesses were not willing to relinquish their prince.
As Jacob was passed from group to group, he left a stream of teary-eyed girls in his wake. Each person wanted to have their last moment with our special boy. They wanted to watch his face break into a huge smile when he heard their jokes and listen to his squeaky giggle. It was hard taking him away from them. The one thing that made it easier for Jacob was having Bracha in the car next to him for the next 6 hours!
Thank you to all the warm and loving people who opened their hearts (and arms!) to Jacob at camp. You helped him have a fantastic experience.

The Time of His Life

Today Marcy and I took the twins up to Jacob's summer camp to see how he's doing after 12 days away from us. We've been talking to him on the phone and texting Bracha daily, but we hadn't seen him in ages. From the moment we got there till the time we left he was so excited and squirming around. He looked great. Older and tanned too.

I think he was really happy to see us and to show us his camp. He's made a ton of friends at camp. Everyone loves him. As always, he's the center of attention with a swarm of princesses around him. I think he was glad we came. I can't speak for Marcy, but I was a bit relieved to see him in his element so happy, truly having the time of his life.

Jacob's report card

Jacob attended Ledbury Park Hebrew school on Tuesday afternoons after school during this past school year. He was placed in a classroom with typically-developing kids the same age as him. He had a great teacher and enjoyed coming to class each week.
Contrary to the ignorant statement by a director of education at a local Hebrew school who believes that exposing young children to kids like Jacob is "too traumatic", Jacob's report card illustrates a perfect example of how everyone can benefit from being around my incredible son.
Morah Hadassah, Jacob's teacher, summarized Jacob's year in the following report:
"Having Yacov in our class really added to the learning experience. His bright smile and big eyes always brought joy to our class. Yacov's favorite part of the day was davening, whenever we came across the word "Yacov", all the kids would point to him. Yacov would get so excited each time and everyone enjoyed watching his face light up. Yacov shows an interest in learning about Judaism. Having Yacov in our class was more beneficial for all of us - the students learned from him and loved reaching out and giving to him. When Yacov was absent or late, all his classmates would ask for him. The students love Yacov and looked forward to his coming each week. I truly enjoyed having Yacov in my class. Thank you for the experience."
And I thank you, Faigel and Hadassah, for giving Jacob this wonderful opportunity.