We felt so alone and so scared and unsure about everything. But we weren't.
While we were reeling in the hospital, my entire family was on a plan to get my mom on a plane. And while Jameson was in surgery, she was in a car, driving away from vacation to an airport hours away to get on plane to get to us. To be with us. To take care of us.
And Hubs coworkers were amazing too. His great friend came and sat with us for the whole surgery, stayed until we heard the doctor say it was all okay, and then went back to meet our beautiful boy. Only two people were allowed in at a time, so I told our friend he better go first because once I get in there I'm not leaving until they kick us out at night.
That night Grandma arrived. We hugged and cried and looked at pictures of Jameson on the computer while Hubs tested out the new point and shoot camera because our old one broke the night after J was born. She stayed for over two weeks and spoiled us rotten. I'm pretty sure Little Man's toy collection doubled during this time period.
The next day, Hubs coworkers and a chaplain came to the hospital and the nurses let them all in to pray around my baby. She said something about how they were all so official looking in their uniforms and she couldn't say no. So many people were holding us up, bringing and mailing meals, emailing us to tell us they loved us and were praying for us.
It was overwhelming. The support and love, which we were so grateful for, yet felt so bad about...all of these people going out of their way to bless us and we could barely be present to thank them. I think we both feel more comfortable being on the giving end of things than the receiving end. And emotionally, we were bewildered with the surprises.
He was the healthiest boy in the NICU. The nurses would take pictures of him for us and tell us how cute he is and how lucky we are and I would look around the room at all of the truly sick babies and everything was so scary and there were so many machines and tubes and I'm so afraid of needles that I've literally passed out just talking about vaccinations and this was really all too much for me. (I've improved on this slightly.)
And then there was this diagnosis of Down syndrome. I had never known anyone with Down syndrome before. It was unfathomable to me at the time. I wasn't even 30. The pregnancy was fine. I have never once in my life tried an illegal drug. How did this happen to me? I couldn't wrap my brain around it and it was so difficult to reconcile my unconditional love for my boy with this diagnosis that I did not want.
When we were at the hospital, when I was holding Jameson and I could kiss his perfect little head and count his ten perfect fingers and ten perfect toes, when I could sing soft and low to my baby in my arms and tell him how much I loved him, then it was all okay. It didn't matter that he was in the NICU, it didn't matter that he had Down syndrome, he was mine and I loved him for being him.
But when we went home at the end of the day, all tired and sad to leave our baby behind, when it got dark and I would look on the computer and read about Down syndrome, read all the statistics and see the future that I had dreamed for my baby curve away down a different path, it wasn't okay then. I was scared of the therapies and doctors visits. Scared of the new timeline for talking and walking. Scared of the increased risk of leukemia. Scared of the idea that my child may never graduate from high school or move away. Scared that he may die at 50, before me. I mourned the loss of my dream for his life. The dream of a normal childhood, of college, of marriage and babies. It was hard. I cried a lot. I stared off into space, lost in terrified wonder of this new future.
And then I would get up in the morning and go to the hospital and hold my sweet baby and it was all okay again. I would hold him and look into his sweet face and just know that we would get through it all and be just fine. It didn't matter if his path was different. It only mattered that we were in it together.