It is only natural for every parent to have certain hopes and dreams for their children. However, those hopes and dreams for Nathan have changed and evolved over the past 5 years but the one thing that has stayed the same is our desire for Nathan to live a long, fulfilling and happy life surrounded by the love that comes from sincere and meaningful relationships. With that said, it has been sad and heartbreaking at times seeing how difficult it has been for Nathan to form close friendships and for him to feel like a regular 4th grader who is accepted by his peers. Nathan has many challenges that make it hard for him to learn in the regular classroom with the other kids and therefore he spends majority of his day in the Learning Lab (Special Ed classroom). Unfortunately, Nathan does not get to go into the regular classroom as often as he would like and when he does it is for very short periods of time.
Earlier in the year, his general education teacher brought in a quilted jacket of hers and let Nathan try it on. She said that Nathan loved wearing her jacket and wore it for 3 days straight. While I’m not sure exactly why he loved that quilted jacket so much but I’m guessing it may be because it had different swath’s of fabric with different textures so he could feel the jacket with his fingers. As it turns out, a surprise birthday quilt project was sparked from the jacket he wore.
The last day of school before Spring Break, we let Nathan take goodies in for his birthday celebration. His birthday always falls on Spring Break so he never gets to celebrate on his actual birthday. Unbeknownst to us, there were many people involved in this project for Nathan and they had hoped it would be ready in time to present it to Nathan on the last day before break. Each child in the classroom was tasked with going home and finding a textured piece of fabric. The teachers and children brought in buttons and fabric made up of such things as sports jerseys, curtains, blankets and shirts. Then, many hours were spent sewing and putting the birthday quilt together.
As a Mother, this gesture was honestly one of the most thoughtful and wonderful gifts he could have received. I have often worried about Nathan not being able to spend much time in the general classroom around his peers and that the other kids would start to forget about him. That is why this was such a great gift that had so much love sewn into it and for the first time I felt like Nathan has been accepted by his peers and that they have not forgotten about him. After the teachers presented it to him during class, Nathan was so happy and came home excited to show Jay the quilt that “all of his friends and teachers” made for him. That made my heart so happy because for the first time he didn’t come home and tell us that he didn’t have any friends.
This year I have noticed the children being very kind to Nathan. I think at this age they understand his struggles a little more and are reaching out to him in ways that I have not seen before. It has been nice when I pick him up and kids run up to my car just to say hi to him or give him a high-five. One classmate wrote him a letter that melted my heart. I had to call his Mom just to tell her how much it meant to Nathan and me to hear what he had to say about his friendship with Nathan.
With as much as we have been through and as much as we have yet to face, this was a moment that I just wanted to hold on to with everything I had. It just felt, if only for a moment, that everything was going to be ok.
I’d like to close with a plea for more prayers for Nathan and our family. Tomorrow morning is perhaps the most frightening appointment at Children’s Hospital that we have had to face thus far. We will be getting the genetic test results back where they have been testing for up to 230 various disorders including Degenerative Neurological Disorders. We have been waiting for these results since last November when his blood work was sent off to Harvard University. We are in desperate need for some good news. A positive test result for one of these disorders could be life threatening and life shortening.
From the bottom of our hearts, we thank you.