My lovely neighbor and friend has convinced me to join a blogger contest!
The topic is: Who is the person you are most surpised to be friends with?
And it has to be 300 words or less- that’s not a lot of words for a blow-hard such as myself but I tried to keep it short.
And I thought I would share…..
wish me luck 🙂
The Most Surprising Friendship:
Lonely, isolated, angry, misunderstood, denial…..words only touched the surface of what I felt when my daughter, Samantha was diagnosed with her disease.
Mystery, prognosis unknown, medically fragile, were the words her doctors used.
My beautiful daughter was six months old when she was diagnosed with rare, fatal muscle disease. I had quit my job, researched endlessly and felt incredibly lonely. I started a blog to pour my deepest fears and darkest emotions. Through that blog I met three other women who all had children with rare, fatal muscular diseases.
We emailed for a while, passed each other supportive remarks and one day decided to meet. In that first meeting, we were instant friends; we clung to each other like abandon sailors on a lifeboat. My new friends knew about uncontrolled seizures, respiratory toileting, manual catheterizing! They knew our doctor! They knew Samantha’s neurologist! They too had processed the hurtful painful words, respite, hospice, hopeless, helpless, and fatal.
We cheered each other in our unique ability to take on doctors, nurses, feeding tubes, seizures, 20 different medications to be coordinated in one day. We cheered our children, each precious, fragile child.
We had found a safe haven in our journey.
My daughter was the first to ‘go’. She took her last breath a year ago. And my special needs family gathered closer around me.
I lost my girl. I am a very real reminder to them that they too, could lose their child at anytime. But they have provided a secure sanctuary where I can celebrate, mourn and talk about the child I had and the mother I was. They celebrate every butterfly they see, every tiny reminder of my daughter and the miracle that we would not have met without our sick, precious children, and that is a true gift.