I am part of a strange society. One I did not know before David was pre-natally diagnosed with down syndrome. I have on-line friends, people I have never met in real life. And they mean a lot to me. We know the same lingo, we share similar worries, we have a team of medical professionals, and we pray a lot for little ones being born or having surgery or being sick.
Recently another little boy was born. He fought so hard. His story brought back a rush of memories of when David was born. Pulmonary Hypertension, blood transfusion, kidney's shutting down, fluid filling up the body, ventilator, oscilating ventilator, medications, and more medications. But this dear sweet boy did not come home. He did not get to see his house or his room. His parents did not get to get up with him in the night or take him to doctors appointments or therapy appointments or worry about his future or how he would do in school or if he would live on his own someday. And that is all they wanted. They just wanted to love their son and be part of his life and the diagnosis didn't matter. And this is always the case.
There have been some amazing babies that have passed away and not all of my on-line friends have children with down syndrome. Some have children with congenital heart defects and some have children with feeding tubes and some have children with cerebal palsy and some have children with brain injury and some have undiagnosed medical conditions. But we all have something in common. We love our babies and a lot of the times we see past the diagnosis. I am not going to lie and say the diagnosis is not part of our lives. There are doctors appointments and therapies and stares and comments, but we really just see our children.
Every mother that has lost her child will tell you they just want their baby at home. Two more mommies shared this week that they miss their babies so much (sweet William has been in heaven for two months and beautiful Kenzie has been in heaven for a month) and wish they had them at home to care for and love them, the diagnosis and the medical worries just don't matter.
I know some people wonder didn't I have a pre-natal diagnosis, couldn't I have made a different decision. Yes, I could have but we knew two things we will love this boy and he will bring us great joy. And we were right and we feel blessed every day to have David be part of our lives, part of our family, and part of the community.
In loving memory of Jordan, William, Kenzie, Max, Gabby, Brielle. Your mommies love you and miss you every day. Your stories touched the heart of so many.