When my children were born prematurely, I liked to hang around with other parents of preemies. I had almost no choice. My days were spent in a neonatal ICU that sheltered me from the harsher judgment of the rest of the world.
In the neonatal ICU, another parent was bound to understand that “breathing room air” was an actual milestone not something to be taken for granted. Preemie parents are not the ones bragging about a child outgrowing a three-month onesie the first week. We are the ones waiting for our children to grow into it.
One day, I watched in horror as the father of a child who had been born without the ability to properly move her limbs peered into the isolette and thought his child had been cured overnight. He called his wife over, but suddenly realized he was looking at the wrong baby. Then, he broke down, his whole body wracked with the enormity of the situation.
In that moment of raw grief, I watched this father’s unrealistic dream – that he would wake up and his child would be fine – come crashing down around him in the reality that he would need to fasten his belt for the long haul. There were no dry eyes in the room from the other parents or the medical staff.
When one of my children came home with an oxygen tank, I was immediately plunged into the world of other people asking nosy questions.
At the time, I wondered if this is what being the parent of a handicapped or special needs child is like. To be honest, I did not yet know if that would be my fate. It certainly was the fate of many of the parents we bonded with in those first confusing days of parenting.
I am thankful on a daily basis that my tiny infants developed as they should, but I am ever cognizant of those that do not.
This sort of information does not announce itself to parents immediately. The father who bent over the isolette that day in tears did not know what he was up against. He did not know what to do for his child. He still may not.
Developmental delays unfold in the slow and gradual ways a child fails to babble or lift his head correctly. It announces itself when a child cannot potty train on time or learn to read like his peers. Even so, those are just red flags for more investigation. It takes years to understand, even for parents. There are always mysteries.
Friends and family may never understand. A special needs child once bit one of my sons in class. The situation was handled appropriately at school and I was notified. The end, I thought.
But other parents pressed me. What will you do about it, they asked? Do you think our children are safe with this child?
Maybe they wanted me to try to use the situation to get this child out of the mainstream, but I would not do it. Any of us could be walking in that parent’s shoes. And, those shoes are not easy to walk in.
Those are the shoes of people who lie awake at night not knowing where their child should attend school. They do not know if their child will be able to maintain friendships. They do not want their child to embarrass his siblings with inappropriate outbursts at games and ceremonies, but it is hard to find someone to stay home with him.
A friend whose child had profound disabilities once confided that an institutional setting might be best for her child, but she was afraid to put him there because he was “so hard to love.”
As they get older, it gets harder. Where will this child live, work? And the scariest yet, what happens to my child when I am gone?
Parents pin their hopes on therapies, early childhood classes and aggressive interventions. Some help, but others do not. There are many false starts and dashed hopes. They are also bright spots and wonderful breakthroughs. There are things we can all learn from the struggle of a child.
One thing we should learn is to be patient. No child or parent chooses this. Please be kind.