Please Stop Talking And Just Listen

I have a child with special needs. Yes, most of the time, he looks and is healthy. I am beyond grateful for that. My heart leaps with excitement because he is one of the lucky ones, who's condition was corrected early enough before permanent damage was done. I would not change one moment of my life, I would not trade a single part of BabyJ. He is teaching me faith, courage, and that I am stronger than I ever dreamed that I could be. He completed our family, the part that we did not even know was missing.

With all that said, his future is very uncertain. His nerves running to his legs are still surrounded by a sizable mass of tissue that could re-tether itself to his vertebrae again, at any time or he could fall and injure those nerves at any moment, he could lose feeling in his legs or GI organs and never get it back. He could be paralyzed from the waist down at any moment. He may be perfectly healthy for his whole life, which is my only wish for him but that does not take those fears away.

You know what, that scares the very heart out of my chest. That knowledge of what could happen gives me nightmares and keeps me awake at night.

Hearing people tell me not to worry or borrow trouble, does not make me feel better. You are not helping my fears. You are making me feel like my fears are not valid because he is healthy right now.

Do not tell me that it could be worse, I know that reality very well.

See, I gave birth to a beautiful baby boy who was declared perfect by his OB that delivered him. See, I had that child whisked away from me for an ultrasound at a moment's notice by a nurse. I had to lay there in total fear while my baby was two floors below me, having a test. I know the fear of waiting 20 hours before a doctor finally could give me some kind of answers. I have had a doctor tell me that my son was born with a mass on his spine and would need an emergency MRI asap.

It became worse for us.

Our dream of taking our healthy baby boy home and continuing on with our lives, was stolen from us, in one very brief moment. We were thrown into a world of long words, surgery, testing, clinic visits, praying to God for him to have a bowel movement because he was screaming from the pain and that feeling like something is going to go wrong at any moment. That feeling never leaves a parent with a sick kid, even when their child is healthy.

So if you hear me or any special needs parent say that they are scared, encourage them by just listening to their fears, let them just get it out. Let them cry in your shoulder. We do not need rescuing, we just need to vent our fears, frustrations, and helpless that we feel, at times.

So many SN parents feel so alone in their feelings because we are also told that it could be worse. For us, in this moment, it is the worse. Our feelings are very real and very raw.

Please, I am asking for you to just listen.


-K