Seen Or Unseen Disability: I Share My Experience With Disability

When we fell pregnant with our first son we were ecstatic. Getting and staying pregnant had been a challenge and so the pregnancy was long and hard. Most women experience morning sickness just in the first trimester but for us, we experience it in the first and third trimesters. Our oldest decided that he was going to try and come early but managed to hold off until he was full term. It was a difficult birth and we decided not to try and have another one but a year and a half later we started talking about trying for another baby and a week later we found out I was already pregnant. We were scared to death that this pregnancy was going to be difficult and really after going through our first pregnancy it was a piece of cake until we hit 32 weeks when our son decided that he was going to try and come, time however he was bound and determined that he was going to come. We managed to keep him in until 36 weeks and then we had him.

One of our many hospitals stays. No matter how many times he is in the hospital he is always smiling

The doctors weren’t sure why he was so determined that he was going to come so early as there was nothing medically wrong at the time. After two days in the hospital we were released from the hospital and going home we thought to ourselves ok we have a premi that we are taking home that is “healthy ” it wasn’t until the next day that we got a phone call from the doctor about his newborn screening bloodwork. Our son has a rare genetic disorder that is the number one killer in newborns (SIDS) called Medium-chain Acyl CoA dehydrogenase deficiency or MCADD for short. The news rocked our world and we had to go into the hospital the next day for more blood work to see if he really did have it.

Getting some comfort while in the hospital

The doctor reassured us that it was the most easily treated condition and that we shouldn’t worry too much about it as long as he didn’t get sick and that he had to eat every two hours or else he could slip into a coma and die in a matter of hours.

The news was heartbreaking and so my husband and I went to work studying MCADD.

Daddy and I after I was born. Daddy was welcoming me to the world and asking me why I was so impatient about coming into this world

MCADD is a recessive gene that you inherited from two parents. The body has a hard time breaking down medium-chain fats for energy and so because it takes forever to break down the fats the body is burning up energy really fast. In order to help it, the person has to eat every couple of hours.

There is no cure for it right now and there isn’t a whole lot of studies on it because it’s rare. 1 out of 10,000 to 1 out of 17,000 live births has this.

31 weeks pregnant had no idea that the next week would be the start of our rollercoaster

Since birth, our son has been admitted to the hospital about 8 times because of his condition. Either from cutting teeth when he doesn’t want to eat or getting sick. We as parents have been trying to be a walking encyclopedia for his condition and to teach everyone about it. The doctors usually have heard of the condition but have never had to experience it first hand so I feel like a doctor teaching a student what to do with my son. The nurses who help our son are constantly asking questions about his condition. When they take a blood sugar test on him I tell them that he never cries about it they are amazed because most kids cry being pricked by a needle.

The first day that we brought him home

Even though he is in the hospital he is always smiling and pretty mischievous about pulling on his cords, it makes our hospital stay more comfortable. His brother is slowly learning that his brother has a condition and wants to help him feel better if that means bringing him suckers or frosting to get his blood sugar up.

Meeting his big brother for the first time

Most people that see us out in public who sees us giving our son sugar or frosting hear the whispers and the comments of how we shouldn’t be giving our son that much sugar but they don’t understand that we are actually saving our son that moment.

The nurses have given him the nickname of Houdini

In all of this, we have learned that disability can be seen and not seen, that no matter what we shouldn’t judge a person or a parent with how they are raising their children especially when they have the full story of their lives. Just be kind to everyone.