Birthday Rainbows

I need a writing therapy session. Kevin just had his 10th birthday. His birthdays seem to cause me to worry about his future. I am sure all parents have some degree of protectiveness about their kids as they enter each stage of life even into adulthood. But I would also imagine most special needs parents, especially if they are an only child, have a much higher degree of “oh my gosh what’s going to happen to him after we are gone” syndrome. Intellectually, I know that it is nonproductive to worry about the future. And with my faith in God, I know that all will be well.  But I still can’t help having these feelings as I see another year go by.

I am very grateful that we live near my husband’s family and that Kevin gets to spend time and see them often. I feel blessed that I have a very close relationship with my parents, my brother and his family, and my sister and her family. We live a few hours from them but it has never deterred us from spending lots of time together. When I was younger, we used to have a closer relationship with our cousins and now we all have our grown up lives and we basically see each other during the cliched weddings and funerals. This year, I began to worry about the same thing happening with Kevin and his cousins. Because you see in my head, Kevin’s cousins are the closest thing he has to siblings. I wish I didn’t have to have hope that in the future Kevin’s cousins will give him the protection he needs when I can no longer give it to him. I was talking to my friend about this and she said something that made me realize his cousins are already taking care of him. Earlier this year, Kevin’s cousins began making book videos and music videos for Kevin which he absolutely loves to watch his silly cousins over and over again. For his birthday, they made him his 4th book video and I believe his 5th music video because they know how much he likes watching them. So because Kevin is who he is, they love him and he loves them. I’m not sure if that will make sense to you but it does to me and gives me some peace.

In the beginning I didn’t have these thoughts because before Kevin was two years old we found Glenn Doman and IAHP. What we learned from Glenn gave me a lot of hope and determination that my brain injured child could catch up to his peers. Everyone knows that we put our heart and soul into the program EVERYday for over 3 years with IAHP and we were rewarded for it when Kevin began walking at the age of four. But for some reason, I had in my head that when he learned to walk this would catch him up to his peers. Before Kevin was 6 years old, we moved from IAHP to FHC, they too have provided me with hope and determination and a much needed day and a half off from program every week (including guilt free visits with family). But somewhere around his 7th birthday I began to realize the gap getting very large between his peers and it was as if I had to accept his disability all over again. This year, I see a decade has passed of families growing and changing while our progress is much slower. At other times though, it is this slow paced life that I feel blessed to have because it grants me precious time to not miss anything and also grants me extra time to receive hugs and snuggles from my sweet boy. Like I said these worrisome thoughts are for the most part around his birthday every year. I understand that everyone has their own challenges to deal with that come in every variety of shapes and sizes. On an everyday basis I try to stay focused on the present and his Abilities and see the joy that he brings to me and others everyday. Despite having extra challenges with his walking this year I am still grateful for the walking that he can do. And I am thrilled to hear his new babble sing with the word mama and the hope and possibility of progress to come. This helps motivate me to continue working hard to make progress and develop more potential for Kevin. And even at times when progress is hard to find I am motivated to keep going because the alternative, not having FHC and this program, I find is less hopeful. 

Thankfully, my husband Jon does not share my sense of worry about the future and this has always made him a perfect match for me because like my Mom, he can bring me back to reality. This perfect combination of my parents and Jon was just what was needed to celebrate Kevin’s 10th Birthday. My parents came to visit us at our house for the first time in over 2 years since my Dad now has a new heart and is doing well. Last year, Jon and I took Kevin to Niagara Falls to celebrate his birthday. We enjoyed it so much that we decided to take a road trip and share the adventure with Kevin’s Grandee and Pap. The weather was chilly and rainy during our trip but it never seemed to spoil the time we spent together. And as we were enjoying the view of the Niagara Falls from our fabulous hotel room we saw a rainbow. And because we were in this fabulous room with a perfect view we were able to see the full rainbow. This just might be another reminder for me to remember to step back and look up for the rainbows in my life.

I know this has been a very personal look into my thoughts and feelings. I felt like in order for me to move on I needed to write through my feelings to get to the positives. I post it with the hopes that it will help someone else and so that I can reread my own words next year, if needed. So family and friends, please remind me if I forget.