Many of us have not taken the time to understand them. We have not listened to their stories nor do we share in their pains. Yet we are quick to point fingers. We are quick to pass judgement. That is why I saw it fit, to share this mother’s thoughts. She only wishes that you wore her shoes for a day. Here is her story:
Isaiah is a three-year-old boy, and he has a disorder called 18th chromosome or 18q-. It is a very complicated disease and just one child in every 40,000 has got 18q-. That brings the statistics to 7800 Americans suffering from this rare disease.
Following his disorder, Isaiah suffers from a series of complicated developmental and medical issues. For example, he has had to go through a kidney tract surgery, endoscopies, heart surgery, and bronchoscopies. Besides that, there was a time in his life where sleeping with an oxygen tube was a necessity. He has also undergone innumerable medical tests and continues to see several specialists. Since he was three months, we have been in out of hospitals, doctors’ offices to see what could be done to make his life better. Isaiah also battles with acute development delay meaning that things such as speech therapy, behavioral therapy, even occupational therapy are of necessity.
Anyone with a special needs child will agree with me that in as much as it is challenging to raise a child with a disorder, it is also a blessing. It is a challenge because of very obvious reasons and a blessing because every challenge overcome brings on immense victory and joy. Sometimes you will be caught smiling like a lunatic but it is until one is where I am that they understand what I mean.
You could be a parent of a special needs child or probably know a parent that has such a child. Then you might relate when I say that sharing my feelings regarding this bit of my life is not something I often do, not even with close friends. That is why I decided to compile a list for the purpose of building our understanding; however, I do not speak for every parent with a special needs child. But from the few I know, and from me, this is what I have seen as pretty universal.
I feel lonely: It is a rather solitary experience parenting a child with special needs. I feel that I do not belong when with mothers of typical children. I want to be happy for them, celebrate with them. However, I feel so sad when I hear one praise their 2-year-old for what they have or have accomplished. For example, having lots of words in their mouth, or for being able to chant ABC’s effortlessly or because he can use his potty without messing the place up. Good for them I say, it is not the same in my world. It is sanity saving when I connect with mothers that have special needs children. That is because we can share the medication stories, therapies and the like that only happen in our world and it is not abnormal for my son not to be able to use a potty at his age. However, even in this somewhat safe community, there are variations in how each child is affected. With my Isaiah having a rare 18q- disorder, only I understand his unique makeup and trials. With the honor that comes with taking care of him also comes the solitude of the role. Many times I feel all alone in raising him.
I feel jealous: It may be difficult for me to come plainly and say it, but it is the truth. When I look at my neighbor’s one-year-old doing the stuff that my five-year-old can not do, say, stand without struggling, a pang of jealousy crosses my heart. It hurts me that Isaiah is struggling to learn what should have otherwise come to him naturally such as laughing, chewing. It is also hard for me to listen to my friends talk about the accomplishments that their little ones have made in so short a time yet my Isaiah is taking ages to learn just one thing. It makes me mourn for him. As absurd as it may sound, it is the truth that I sometimes feel jealous of other special needs children. That is because some seem to grasp faster or have disorders like Downs Syndrome, Autism that are easier for the public to understand, cope with, offer assistance and resources compared to that of Isaiah. It may sound petty and just, so you know, it does not belittle my son’s accomplishments over the years or my joy and pride, but it is the truth.
I am always worn out: Parenting on a whole is a daunting task. However, parenting a child that has one disorder or the other takes daunting to an entirely new level. Fatigue seems to be a constant companion. In as much as I may have had a good night’s sleep or taken some time off, there is an ever-present emotional and physical tiredness accruing from the weight to taking care of his needs regularly. The visits to physicians, and therapists are numerous seeing that things such as therapy may be a daily regimen. The only spare time I may have will not be mine because I will use it to look through the piled-up bills and paperwork or something for Isaiah. For example, researching for whatever new form of treatment may be there, how I can make his life easier, and joining other special needs parents to advocate for our children in the education and medical system. That is all in addition to the emotional strain that comes with raising a special needs child. That is because most of the time you never know what to expect and may be dealing with peaks and valleys of his life always. It is not to say that I am not thankful for the grace to keep moving or the help given by friends in any way to make life a little easier for me.
Despite all the above, they are thankful to have their children and take care of them. That is not to say that there are none that wish them dead or that they were never born.
Look out for part 2