Don't Be Scared of Monsters, Mommy

I can definitely relate to this! My son has bipolar disorder and every time I hear of a suicide, I feel the wrench in my gut, the fear that makes me ache that this will happen to my son someday. The same can be felt in news stories of mentally ill adults who go off their medication and commit crimes. Then there is the fear of what happens when I am long gone and not here on this earth to help my son. It really is a nightmare of monsters in my mind!

I can completely relate. I am a mother of 4 boys. My oldest is watching his 3 brothers from heaven. One of the three is almost 4 year old, Noah. He has Down Syndrome. I can't express all the fears I have. I have the overwhelming fear of losing another child. I think it's in part to already having done so. I also fear that society will not see the same beauty that I see in my beautiful little boy. He is adorable "now", but what about when he grows up...will people be as accepting? I fear that he may never speak, have his own family and I fear everything in between. I love my Noah. Sometimes I too, am ashamed of my feelings. I get frustrated by his inability to communicate. I can't imagine how frustrating it must be for him! He bats his long eyelashes and I forget I was upset. He is a precious gift and he helps me see in a different light. It makes me more appreciative of the little things. I can't, however, pretend that I don't realize what he doesn't do! I guess we just have to take it day by day. He will do what he is ready to do. No amount of "reasoning" with him will change that.

One night I held my daughter really close into my chest and fell into her and breathed her into me, As I held her close I was overcome with a great urgency and need to keep her safe , I whispered " Please don't die, please don't ever die'....

Is that not right?
There's something not right about that I know.

Being grateful simply for the life of our child is in my mind as well. That's the core piece.
I think I'm too hormonal to write more - or just still too raw about it - I'm back to crying again.

http://www.doozeedad.blogspot.com/

As the mother of a special needs kid with multiple and severe disabilities, my fear is of the morning I walk into his room and find him not breathing, since he's already lived beyond what the doctors told us to expect.

I feel like you pulled this post straight out of my heart.

My 4-month-old is... well... a mystery. Despite spending the first 10 weeks of her life in the hospital and having every test under the sun, she has no diagnosis. Only a collection of symptoms and characteristics and the specter of likely developmental delays. Some commonalities with Down's kids and Autism Spectrum disorders, but she doesn't actually fit into any of those boxes.

I worry. Will she ever talk? Will she ever walk? Will she (gulp, shame) act like a "normal" child or adult? I, too, had that feeling of shame. When she was at the hospital, I'd see older kids with all variety of medical and developmental problems. Wheelchairs, bags, tubes, everything. And with a big helping of guilt, I wondered if that would ever be me, and hope it will not.

It's such a question mark. We want our kids to be happy, healthy. Unique, but not "different." Of course we love them 100%, regardless. But oh how we wish that everything was perfect.