The happiest day of my life was in June of 2002. It was the day my son was born. He is the most beautiful person I have ever laid my eyes upon. I know every parent says that but I had wanted Joshua so desperately my entire life. The first thing I remember wanting to be was a mommy. The moment I saw that sweet boys face I knew that I had dreamt of him for forever. I knew with every ounce of my being that I was created to be this child’s Mother.
Let’s go back 27 years and 2 months from that moment. I came into this world as a big unwanted secret. My parents hadn’t known each other very long before my conception and neither of them were willing to share their joyous mistake with their families. I surprised everyone when I arrived a couple of months early. My mom lost a lot of blood during delivery and was hospitalized and bed ridden. I was flown to a hospital in Baltimore where I fought for my life. I had a mom who couldn’t be with me, a father that didn’t want me, and a family that was in complete shock over my mere existence.
I am telling you this because it has played a large role in my self perception. I started in this world unwanted and alone and that is how I felt for the majority of my life. As sad as that may sound I truly believe that prepared me for my greatest calling….being Josh’s mom.
The universe throws some strange cycles into your life. Shortly after Josh’s birth he was also flown to Baltimore fighting for his life as I did 27 years earlier. His fight wasn’t because he was a preemie gasping for oxygen he was having seizures. He had more than 80 of them in his first three weeks of life. I made sure I was on the helicopter right next to him. I was not going to allow him to be alone.
That had been the scariest week of my life. I had no idea if my baby would survive. He was diagnosed with epilepsy and brain damage. A week after we left the hospital he received his main diagnosis of 1p36 Deletion Syndrome. He is missing a tiny speck of chromosome 1. His disability impacts his life mentally, physically, and medically.
I was terrified for Joshua when we received his diagnosis. Frightened for his health and scared I may lose him. I never asked why me? I did ask why him? It didn’t take long for me to come to the realization why not him? People are impacted by disabilities every day. Not everyone can have or will have a perfectly healthy child. I know Josh is an inspiration. I believe in the depths of my soul that he has a great purpose in this world.
We were at an optical store when the reality of Josh’s disability hit me. Josh was 8 months old and still unable to hold his bottle. I was signing papers with one hand and feeding him with the other. My arms stretched as far as my torso would allow. We were approached by a very outspoken, rude woman. I will never forget her. She looked at Josh and said “You should be holding your own bottle. You are a lazy baby. Don’t make your mom hold that for you.” I blurted out “He is disabled!!!” It came out in my need to defend him. I had never said that to a stranger. Now that it was out I needed to figure out how I was going to deal with other’s questions and remarks. Do I explain to them or ignore them? Josh was only going to get bigger. People were going to become more aware that he was different, They were going to start to ask questions and begin to stare at him. I decided that I wanted to educate people about 1p36 deletion syndrome. I wanted to help people to understand and to accept persons with disabilities.
I am so proud of Josh. He has been through more than most people could ever fathom. My silly boy is such a happy child. Josh has been hospitalized more than I can even remember. He has had 13 surgeries. That boy started physical, occupational,speech, and cognitive therapies at 2 months old. He was in therapy for 10 hours a week by the time he was 4 months old. How many infants do you know that have to work that hard just to survive?
Josh doesn’t know any other life. He may not speak but he has learned to communicate his needs and wants. He is unable to walk but he has his own way of getting around. Josh has adapted to his world . He seems to be quite happy and content.
Our universe comes full circle. If I hadn’t been rejected and felt isolated throughout my life I may not be so cognizant of Josh’s feelings. Josh was 3 years old when I noticed when he was complimented he would look down and sometimes cry. Not feeling worthy of kindness has also been a struggle for me. I immediately started to rectify the situation. Several times a day I would ask Josh if he is the strongest, smartest, silliest, bravest, most beautiful boy in the whole wide world? I would also make him sign yes to everyone of those questions. I would then say ” Have I told you today how much I love you? I love you more than anyone in the whole wide world.” Josh would look away and frown when we first started doing this exercise. Nine years later and we still do this everyday, but now he smiles, laughs, and signs YES as enthusiastically as he can. He knows he is awesome and loved.
I could let my past or even the struggles that come with having a severely disabled child impact me in a negative way. I choose to look at the beauty in my life. Don’t get me wrong I am not always Miss Susie Sunshine. I sometimes cry , feel overwhelmed and even sad by our unique situation. However, I have a beautiful, loving, sweet, smart, and sensitive son. I know what it is like to give and receive unconditional love. I have seen miracles take place through him. I have meant some of the most amazing people I could ever imagine knowing. Joshua has made me look at life differently. He has made me a much better person. As cheesy as it may sound how can I possibly wallow in sadness? I have been given the most incredible gift. A beautiful, healthy, funny ray of sunshine by the name of Josh.
I am thankful everyday for my crazy, wonderful, and chaotic life. I wouldn’t trade it for anything.
If you would like more information about 1p36deletion syndrome or help other families with 1p please visit: http://www.1p36dsa.org/