Before having my first child, I never knew the depth of love I would have for my son. It was quite unexpected. Like a part of me living outside my body. What happens to him; happens to me. I did not know I would be so emotionally tied to him.
Add to the mix, having a special needs child. This momma was an overprotective bear protecting her baby cub. Not even going to the park for fear of what might happen. After all, we had a ventilator and emergency equipment to contend with justifying my fear of the unknown.
Thus the title of special needs mom carries with it the normal mom worries and ups the ante with having a medically fragile child. I wasn’t given a handbook on how to deal with these heightened emotions. I knew that the medical textbook stated my child had a not compatible with life diagnosis. With that knowledge, our child came home at six months old.
I knew of no one else on my same journey. No one I could ask. No hanging out with the moms in the park comparing notes and asking for advice. Instead, I had a team of nurses and a doctor for almost every body part. But how to handle my emotions? That I would learn on my own.
One day, my son had a significant life threatening event and had to be taken to the hospital where they stabilized him. After a few short hours, we were able to take him home. We had a happy ending that day but my emotions did not forget.
And so, when I see a sniffle or hear a cough, my emotions go into hyper overdrive. I hold my breath and think of the worst case scenario. What if he’s getting a cold? What if we need to put him on the ventilator? What if we have to go to the doctor? How can we avoid him from catching something there?
Before allowing my emotions to get completely out of control, I try to remember to breathe. Then implement a quick prayer, even if only a few words long. And finally, watch my son’s symptoms to see if they progress. Many times, what I’m worried about doesn’t happen. The sniffle is a spring allergy or the runny nose is short lived.
Will these intense emotions lessen over the course of time? Probably not. We are mothers, after all. Can I learn to rest in prayer and past experience to help me overcome? Yes. And now with the age of Facebook, I’m no longer alone on this emotional journey. There are many groups where I can share my experiences or ask a question and receive amazing advice.
Here a few of the groups I frequent:
Relating to Dwarfism:
Distrofia Tanatoforica Grupo de Apoyo https://www.facebook.com/groups/distrofiatanatoforicagrupodeapoyo/
Dwarfism Awareness https://www.facebook.com/groups/95652271485/
Dwarf News https://www.facebook.com/groups/dwarfnews/
Little People From Around The World https://www.facebook.com/groups/145818582116318/
LPA Central Star Chapter- Kansas City https://www.facebook.com/groups/356002067544/
Parents of Little People of America https://www.facebook.com/groups/83385134915/
POLP on Facebook https://www.facebook.com/groups/28821559873/
Thanatophoric Dysplasia Pregnancy & Survivors Group https://www.facebook.com/groups/268730639905037/
Related to Special Needs:
Families of Children with Tracheotomy’s https://www.facebook.com/groups/214309288821/
Florida Mommies of Miracles Chapter https://www.facebook.com/groups/327349303953084/
Kids With Vents https://www.facebook.com/groups/kids.w.vents/
Mommies of Miracles Discussion Group https://www.facebook.com/groups/momsofmiracles/
Special Needs Prayer Network https://www.facebook.com/groups/144016549067733/
So, in the end, we are not alone in our journeys. What groups do you frequent? Where do you find inspiration? How do you handle your hyper emotions of being a special needs mom? I’d love to hear your ideas. Who knows, maybe they’ll appear in a future blog.
By Evelyn Mann
Author, A Miracle In My Living Room