The following was eloquently and heart-wrenchingly written by Jack's mom, Jen, in response to another mom's blog post.
I just got done reading your blog. It took me a while as the tears were making it hard for me to read.
My son also has Phelan-McDermid Syndrome. His diagnosis was an extremely hard pill to swallow. I despise the fact that I don't know something is wrong with him until it is too late because of his high pain threshold. I am saddened by the fact that he is non-verbal and devastated by the fact that he has never called me mom or said I love you. What’s worse is the likelihood of that happening is pretty much non-existent. I worry constantly that he will get a hold of something he shouldn’t and eat it because of his need for oral stimulation and pica. I fear that the cyst in the back of his head will be unstable and cause more issues that I’m not prepared to deal with. I too am scared of what the future holds, the possibility of seizures and regression bares heavy on my heart. I too grieve for what could have been. I lie awake at night wondering what will happen to my son when my husband and I are gone. I am anxious when I bring him out in public. What will people say? How will people act if he acts differently? How will this affect my other children? I feel guilty that his brother and sister have spent more time in a hospital than most adults have because they accompany us while he visits with specialists. I feel guilty that my other children don't have the leisure of a typical life. Phelan-McDermid Syndrome has robbed my son and my family of so many things that it brings me to tears just thinking about it. You portrayed it so much more eloquently than I am able to do. And while I’m not “feeling” lucky that he/we have been dealt this hand in life, I do feel exactly the way that you do.
I too love his innocence, his genuine smile and belly laugh. I love that at the age of 13 he loves to have his mom hug and snuggle him real tight. I love the persistence and determination that he displays each and every day of his life despite all that is thrown at him. I love that this beautiful boy has brought so many well-meaning, loving, and generous people into our lives. I love that he has brought my family closer. I’m so appreciative that he has taught us to appreciate the small things in life. I adore the life lessons that he has taught us and his siblings: never give up, stand up for what you believe in, and take one day at a time.
Just like you, we are Phelan Lucky to have been given the gift of Jack. I cannot imagine my life without him. I am also Phelan Lucky to have found the foundation. They have provided us with information, support and most of all hope. It wasn’t until I became a bit more involved that I truly realized what the families in the foundation are doing to help my son, our sons, and all PMS kiddos. When I think about the time, the thought and the effort that parents just like myself (many of whom have children who are much more medically fragile than mine) are doing to help create a better life for our kids, I do feel lucky. I feel fortunate to have people searching for answers, looking for therapeutics and pushing scientists to collaborate and discover ways to make life easier for them. I am blessed to have a forum where I can share heartaches, joys and questions with those who truly "get it".
You see in no way do I feel fortunate that Jack has a diagnosis of PMS. I would never have chosen this life for him. However, I have learned that life doesn’t always give you what you want or dream of. This is our life, Jack’s life, and I want to make it as wonderful as I possibly can.
With that intent I created the PHELAN LUCKY campaign. Not to focus on all of the devastating challenges that PMS has brought us but instead to shine a light on what an incredible person Jack is and on the amazing people that are fighting for his well-being. THIS is why I am PHELAN LUCKY.
Please know I wish you all the best, like I said I feel you wrote the story of my life. I just wanted you to know why I created Phelan Lucky and to understand that this was my way of helping to provide funds for the research we so desperately need and to help raise awareness for the syndrome.