Wednesday, May 28, 2008

Bais Yaakov presentation - May 28, 2008

I am honored to have the opportunity to talk to you today. You might be aware that my son Jacob has been part of the Yedidus program for the past 2 years. You might also know that I think the girls in the program are some of the most amazing people I’ve ever met.

I’ve been told that Jacob is a familiar face at your school, thanks to the many pictures Bracha has of him. But for those of you who may not know him, I thought I’d share some images with you.

As soon as Jacob was born, we knew something was wrong. He had trouble breathing and couldn’t eat. He spent the first 3 months of his life in the hospital. Jacob was our first child so in addition to learning how to take care of a baby, we also had to learn how to care for a very sick child. Among other things, we had to learn how to feed him through a tube in his stomach because he couldn’t swallow. We had to be very careful not to expose him to any germs because even a simple cold could be life-threatening for him.

We lived the first year and half of Jacob’s life as if we were in a bubble. We spent most of our time at home and had very little contact with our friends. We had moved in to a new house shortly after Jacob was born but didn’t feel comfortable socializing with our neighbors because of Jacob’s health issues. Most of our family and friends were too scared of Jacob’s needs so we didn’t have many people willing to help us care for him. Nobody was comfortable being alone with him. These were very hard and lonely months. It was painful for us to get together with our friends who had children. Seeing other kids run and talk and eat was so hard for us. It made us see all the things Jacob couldn’t do.

Somewhere along the way, things started to change. This change was gradual and I don’t really know when it started but at some point we realized that our special boy brings so much joy to those around him. He has the most amazing smile and a giggle that just makes you want to laugh too.

The first time I heard about the Yedidus program I was not comfortable having Jacob participate because I thought that since adults we knew wouldn’t spend time with him, I figured strangers, and teenaged strangers, wouldn’t be comfortable either. Boy was I wrong!

The following year I decided to try, and I enrolled Jacob in Yedidus. One of the assistants at Jacob’s school was a former student here who thought it would be a great experience for him. She arranged to come to his first session at Yedidus and help familiarize his counselors with his needs.

Although the program runs until 1 in the afternoon, I thought I would take Jacob home early so that I can feed him. None of our friends or family was comfortable with his tube feeding so I just assumed that would be the case with his counselors. Again, I was wrong. I was shocked when I was told that they would take care of his feeding. I couldn’t believe these teenagers would feel comfortable with that task.

I came to the first session armed with a full page of step-by-step instructions on how to set up his feeding pump and run the feed. It took less than 5 minutes for me to see that they really didn’t mind doing it, and weren’t even afraid. This, to me, was amazing. They were so welcoming, warm and excited to have Jacob join the group.

As the weeks went on, I continued to be impressed with the skill, compassion, energy and love that is showered upon my son, and the other kids in the program, each week.

I know there are many girls who contribute to the success of the program, and I want to share a few experiences that stand out in my mind.

Bracha told me that whatever Jacob gets from her, he gives her twice as much. If that is true, then together they give me double that. As soon as we mention her name, Jacob’s face lights up. When he hears her voice, he squirms so much that he would fall out of his chair if his seatbelt was unfastened. It is amazing and heartwarming to watch them together.

One Sunday during this past year, there was no Yedidus – I don’t remember why. Dina was so sweet to ask if Jacob could come to her house for a visit. It felt so good to know that there really are people who love him, want to spend time with him and are not afraid of what might happen. When I arrived at her house to pick him up, I saw a beautiful scene. One of her younger sisters was holding Jacob and the other sisters, I think there were 4 others, were all around him. The girl holding him announced that she figured something out: when Dina would be old enough to run Yedidus, she would be old enough to be his counselor.

Last year was a year of learning for me. I learned that there are people who have the compassion, energy and desire to work with special children like Jacob. Unlike most other teenagers and adults, they are not afraid of the challenges and differences that a child with a serious disease has. The girls from Yedidus know that each child has a need to be stimulated, spoken to, and held. They see how these kids’ faces light up when something is funny, or when someone takes the time to read them a story. I learned that there is an amazing group of girls at Bais Yaakov who truly love my son and I learned that these girls don’t realize how remarkable they are.

This year I made a conscious effort to tell people about the program, the school and the girls. I have friends and family who are surprised that I leave Jacob with kids. I know they question whether it is a smart thing to do. I have no doubt it is the best thing I could do for my child.

So, last year was my year of learning, this year was my year of talking. Next year will be my year of helping. I want to help you promote the program and the great work that you do. I have asked for, and been given the permission by Zareinu, to be the representative for the school and do my best to help you in any way I can.

There is an African proverb that says: “It takes a village to raise a child”. I want to thank you for being part of my village.



Thanks to Jake's Dad for the video

1 comment:

Julie said...

Marcy, my heart is so full from your speech. You have a gift as a mother and as a writer! I am literally on a high after reading it. We are so fortunate to know those girls at Yedidus and we are fortunate to know you and Jacob (Ya'acov) :). Kol Hakavod!