Tuesday, June 17, 2008

What God gives us to bear, but not alone

Yesterday I was feeling pretty sorry for myself, Tom and Natalie that we still don't have a resolution to the care of her eyes.

This morning as I was in the car on the way to the pediatrician (to have her fill out the wellness forms for Lukas' preschool...why didn't I remember to bring that to Konrad's visit last week?) I remembered what it was like with Natalie two years ago: hooking her up to a feeding pump at night, constantly cleaning her up after her reflux/vomiting; giving her several breathing treatments each day...and trying to help her get interested in the world around her so she would move and exercise and learn.

Praise God that those days are behind us and now Natalie is eating by mouth, not throwing up or refluxing, has healthy lungs and is getting into everything, whether she walks or crawls into trouble.

It was nice that I got over my pity party before we made it to the pediatrician's office, because then I got a chance to be thankful to God for the task he has given Tom and me to bear, but not alone.

In front of us getting onto the elevator was a 12-14yo boy pushing his older sister in a full body wheelchair. I don't know enough about the wheelchair terminology to tell you exactly what it's called, but his sister did not have good head control, so it was a wheelchair that supports her in a very slightly reclined position. Their mother was pushing the button for the floor as I wheeled my three kids onto the elevator.

Three years ago I would have been very uncomfortable in this position, because I didn't have any experience with special needs people. I would have used proper elevator etiquette: I would have looked away.

Now I looked.

I could see that the girl wasn't making eye contact and probably didn't speak. She didn't have a trach, but she was making funny sounds in her throat and her teeth were incredibly jumbled in her mouth. She was a cute girl, but she wasn't interacting much with her world. I said "hi" to the girl and her brother said something like, "she doesn't talk." I thought of Lukas in a similar situation and wondered what this boy had gone through in his life, with a special needs sister. The boy commented, "what a cute baby" about Konrad, and his mother said hi to Natalie, who was smiling at everyone on the elevator. We exchanged a few pleasantries.

We both got off on the same floor and as they went to a specialist (I think the same cardiologist as Natalie's), the boy said, "Nice to meet you." I said, "Bye!"

I have been thinking about this all day, and I had to put my thoughts on paper (or the web!) My thoughts come at me from so many different directions...I saw a lot of kids who were more disabled than Natalie when we were going to the children's hospital 3 times a week for Natalie's feeding therapy, but since then, we only see them occasionally.

Here are my thoughts, in no particular order:
  • I am thankful to God that none of my children are that severely disabled. It is probably the same thought that some have about Natalie. I don't think either you or I are being mean in thinking those thoughts.
  • When Natalie was born, I didn't think I had the strength to care for a special needs child, but God didn't leave me to do it alone. He gave me a wonderful husband who was even more accepting of her than I was, family who is very accepting of her, and a church family who treats her like their own. God has been there every step of the way.
  • I am very thankful that Natalie is sooooo happy and makes other people happy too. But so many special needs kids have difficult personalities and behaviors or are not interactive...how would I handle that if I had it to bear?
  • People have told me that Lukas (and now Konrad) will be very special boys for having a special needs sister...how much stronger is this boy that I saw whose sister will always require 100% care?
  • How many people who are not doctors say "hi" to this girl? Her disabilities would probably make the average person turn away, but she is not unaware of our presence and how we see her.
  • How do we value the lives of the disabled? As our pastor told Tom and me, we are all disabled in God's sight...we all need him and are nothing without him.
I prayed for this woman and her son and her daughter. I pray that they have more support from their family and church than even we do, for their task is harder than ours, and I do not envy it. I know those with only typical kids don't envy the task God has given to Tom and me, either. I wouldn't! But I am thankful for what our family will learn as a result of our special life.

But we couldn't do it alone. And those who get involved in helping families with special needs kids will reap some of the benefits too.

It's easy to help...instead of turning away, the first step is to say "hi."


BusyBee said...

I have tears in my eyes as I read your post. After working at Regional Center and having children on my caseload similar to the girl you described and knowing Natalie, it has made me appreciate and be thankful to God for all that I have. I also now try to make a point of acknowledging people with special needs that we see out in the public and encourage Bella to wave or say Hi. Thanks for sharing

Myssie said...

Beautiful post Cindy.

Jacqui and Lloyd said...

Thank you for sharing your thoughts - they really are so wise and so insightful and so beautiful!! I was really moved reading your words. I often pray that God will help me see people as he sees them, to see their hearts and not to get stuck on what the outside looks like. I reckon the world looks different through God's eyes - those who appear broken and "useless" might have strong, brilliant hearts that delight God.