What then?

By Sandy on April 2, 2011

Josiah follows me. I’m fully aware he is behind me most everywhere I go. Sometimes I stop. He bangs right into me. If Rick has him and I leave the room, sometimes he finds me and just stands by my side. If I go into the bathroom, he always knows. Before too long, the door opens. He doesn’t knock. He walks in. He plops himself down on the lid of the trash can. I expect it now.

Maybe being non-verbal he thinks I understand him best. Maybe he thinks I will know what he needs or wants when he needs or wants it. Maybe he’s just grateful to be home again. Maybe he does not want to leave me. Maybe he thinks he will be whisked off to a residential center again. I really don’t know.

‘I Can’t Take It No More’

By Sandy on March 30, 2011

We made it through our lengthy hospital stay at Rainbow Babies by the Grace of God. And by the kindness and compassion of many family members and friends. Many thoughtful people, some of whom we had never met brought meals to our home on a regular basis. We had many visitors at the hospital who showered us with cards and flowers and take out meals from our favorite restaurants. Many people prayed for us. It helped tremendously.

Near the end of our stay, I felt exhausted. Staying at the hospital non-stop, changing diapers, feeding and rocking babies and not sleeping much at all, eventually took it’s toll. A very dear friend who just happened to be a nurse in another hospital and a wonderfully sweet sister-in-law came to the rescue. Despite my misgivings about leaving my children, each insisted I needed to get OUT of that hospital. They were right.

The Hardest Thing I’ve Ever Had To Do

By Sandy on March 27, 2011

It’s been a little more than a year now. Thinking about it still brings tears to my eyes. I swore I would never do it. Even though I hadn’t really verbalized that to anyone in particular, I just knew deep in my heart I could never, ever do it. But sometimes we don’t have a choice. Sometimes life becomes so painful, the hardest thing becomes the only thing. And so it happened.

I Wonder

By Sandy on March 26, 2011

I wonder sometimes. Why is it some children are born with disabilities? What is the purpose? Is there something we as the parents need to learn?

Years ago we had a neighbor a few doors down who had a daughter with Autism. She is the first friend who had a child with a disability. I used to marvel at how amazing my friend was with her child. I never once felt sorry for her. She never felt sorry for herself either, as far as I could tell. But I’m sure it was hard. I know she had many challenges and life was not easy for them. Rick and I told her we had no idea how she did it. We told her we could never parent a special needs child.

What Would You Do?

By Sandy on March 23, 2011

The call came early.

I remember the phone ringing. I remember thinking, this is it. The Dr. is going to tell us our unborn child has Down Syndrome. I just knew like you know about things. The funny thing is I was fine with it. I really was.

Even before the amniocentesis, I remember reassuring my sister everything would be okay.We have 4 ‘normal’ children. It will be interesting to see what life is like with one who just has a few more hurdles to jump over, I told her.