Fellow Warriors

I was told that my baby had a chromosome disorder due to his many birth defects, the doctors just didn't know what it was. I started out wishing he didn't but as time wore on, I hoped I could find out what he had so I could have answers to his issues and knowledge of what medical/mental situations that may arise later in life.

After testing for two years, I found myself in a room with a genetic doctor who sympathetically broke the news to me.

"Your son has a microdeletion on his sixteenth chromosome. 16p11.2. The problem we have now is there are only a handful of cases in the world with your son's deletion. He would be a good candidate for research." The doctor said as he put his arm on my shoulder and instructed me to keep in touch with him in hopes that he may find more information on my son.

I drove the two hours from the hospital to my home crying. I finally had a name to his condition and yet I still had no answers. It wasn't fair. I was just as lost as I was when I walked into the doctor's office.

I drowned myself in research, trying to find answers only to come up empty. I was in a bad place mentally and emotionally.

I do not remember how our paths crossed, but I found a fellow Mom with a child that had the same deletion.  

She and I became very close, she was my kindred spirit. The Mom was more internet savvy and soon she found other Moms and she created a Facebook support group.

I found myself on the page constantly. We all had the same frustrations, fears and anger. We shared our hidden thoughts that we dared not share with the outside world. We compared our children's symptoms and challenges. We shared our joys, hopes and the powerful love we possessed with our children. We were One. We were different and yet we were the same.

I learned so much from these Moms. The knowledge of our children's conditions that we gathered would put any genetic doctor to shame. 

The group formed five years ago and it has grown to over four hundred parents. It saddens me to see new Moms joining the group. No one wants another to go through such things, but it warms my heart that the new  Moms have a place to go for help. No one should feel completely alone and lost with no answers.

When I speak to new Moms that are faced with a devastating diagnosis, I tell them do not google, seek out fellow Moms. That is where you will not only find answers, you will find love.