Monday, March 24, 2014

Guest Post: Jason

So excited for my second guest post written by my good friend Melissa, whose oldest child has Down syndrome. Her son has gone to school with Julianna since they were little and they are only a month apart in age! Thank you, Melissa, for sharing your story. If you or anyone you know would like to post in the month of April, email me at

My name is Melissa and I have a son named Jason who just happens to have Down syndrome. He is ten years old and the oldest of my four children. I will not attempt to share all I have learned or experienced as the mother of a child with “special needs.” I hope, however to give you a glimpse of what treasures I have found on this journey of mine.

            As I stated before, Jason is my first born. I was 27 years old when I gave birth to him. It was a difficult pregnancy and birth. During the pregnancy I gained 60 pounds, had a fibroid tumor (a benign tumor of the uterus),and towards the end of my pregnancy broke out with the pruritic urticarial papules and plaques of pregnancy (PUPPP) which is basically a rash on the abdomen and other parts of the body. At the time we lived in a trailer and it was during the hottest part of the summer. I also had polyhydramnios which is a condition when pregnant women have an excess of amniotic fluid. Needless to say it could have been worse and none of these conditions are life threatening but do not make for much fun! I was monitored by a specialist for the majority of my pregnancy and was told that my son may have a chromosome disorder. We never received an official diagnosis until after his birth because I declined the amniocentesis and my alpha-fetoprotein test to determine abnormalities in my unborn child came back a false negative. It did not matter to me if my son had Down syndrome. He was my child and I his mother. Nothing was going to change that.

            So, after being a week overdue and 16 hours of labor, Jason went into distress and an emergency c-section was performed. I was able to see him for about 20 minutes until he was taken to a children’s hospital where he would spend the next 9 days, of which the first 5 days I spent apart from him in the hospital I gave birth in with my own complications. It was a hard experience for my first time being a mother, but God prepares us and provides the help we need when we truly need it. It was not hard because my son was diagnosed with Down syndrome, but because he was my baby and I wanted everything to be alright.

             And it was….Jason does not have major health issues….at birth it was initially respiratory issues from a complicated labor and the time in the hospital was due mostly to an extremely high bilirubin level and monitoring for a transient leukemia. For the most part he has struggled with chronic sinus infections and Celiac disease (an allergy to wheat and gluten).Of course we have spent our time with specialists throughout the years as most parents of children with special needs or health issues do. We are currently trying to rule out seizures.

            So far, this is pretty boring and probably nothing new, but I wanted to give the background of our story to make the point that sometimes what might seem like a hard or difficult situation really turns out to be a blessing and doable. The things that we think are so hard to go through are hard, but when faced are bearable, because a mother’s love gives her the strength to meet the task ahead. Our love for our children outweighs the feelings of inadequacy, fear and doubt we may have.

            Now, I will fast forward ten years (someday maybe I will write again about my day to day life with little Jason which is eventful to say the least). Jason is a lot of hard work and a lot of fun. He basically has two modes. The first is what I call the “Dennis the Menace” mode and the other is “My Sweetheart” mode. If there was a third one it would be “The Sick” mode for when he is ill…no fun…high fevers…puking. What have I learned? He is my son first and always has been; he just happens to have Down syndrome. Why?  I do not know, but I am thankful. However, having Down syndrome is part of who he is and part of what makes him so beautiful! I have thought at times what life would be like with just my girls (ages 8, 6, and 3). It would probably be a lot easier but I would not be the same person and neither would they.

            I really think we get the better end of the deal with having Jason in our life. It is he who teaches us about what really matters and about unconditional love. His laughter is contagious. When he smiles…my heart melts. As I sat earlier to start writing this I was having a bad day, I was sad and he must have known it. He brought a chair and placed it right next to mine. He plopped down in the chair and put his arm around me and just looked at me with a smile. He was happy to let me continue writing; it was like he just wanted me to know he was there and that he loved me. How often do we do that as adults? Usually someone has to beg for our time because we are too busy. Anyhow, there is so much I wanted to write and did not. I wish that each person who reads this could meet Jason. Below is a poem that I wrote on his behalf.

My Name is Jason     

My face is a little different                                                                                             

And so is my speech

I do things a little different

Though, I am a lot like you

Some things are the same

I need to be taught and loved

And given a chance to make gains

It may take me a little longer

To do what I want to do

But with patience and work

I will improve

My mom says my job is

Helping her to appreciate all

Of the little miracles that most

People don’t see…

Like appreciation for the little

Blessings that God bestows,

Being able to say more words,

Being able to communicate a need,

Understanding what you say to me

Mom says God made me special

I have Down syndrome you see

And though sometimes it’s hard for Mommy

And sometimes even hard for me

I make this world a better place

Just by being me.

I love people unconditionally

They do not have to be pretty or smart

I see as God sees for He looks upon the heart.

My face lights up with the simplest of joys

I find happiness in being with my friends

And not just with my toys

I want to do the things you do

Play football and have fun

So please help me to feel a part of

And loved…


Written By: Melissa, for my son, Jason



No comments:

Post a Comment