I’ve been sitting here this afternoon reading your blog. We met briefly in the hallway at Live Oak a few months ago while we were both waiting for our boys to get out of RE. I’ve been aware of your family for a while because my daughter, Anna, also uses a wheelchair at times. Right now she’s getting around with just her crutch. Anyway, I noticed Rachel because I’m always aware of other people who use wheelchairs.
Our family has faced it’s share of challenges over the years and I can really relate to much of what I’ve read so far in your blog. We’ve spent many, many nights at Children’s Hospital in Austin. My daughter sees Dr. Lockhart for long term drug therapy to help her bones so we’re pretty familiar with that office and sitting around the infusion room. What really touched me about your entry on thankfullness was how Jacob brings laughter to your family. We have experienced this in our family too. When Anna was diagnosed with a chronic bone disorder at 9 months old, our world fell apart. It took years before we even felt having another child was a possibility because we were so busy taking care of Anna. But then when our twin boys were born, a lot of healing happened for my husband and I. Even though Anna’s medical challenges were pretty much a “normal” part of our lives by then, we had not anticipated how much joy and laughter would be added to our family with these two new members. Although there were quite a few times while I was pregnant with the boys that I thought “What were we thinking trying to have more kids?” now I know that even on the hardest days, it is all worth it.
I could also relate to your comment about 4 weeks being as far as your long term planning could go. Ditto for our family a lot of the time! Having a family member with a chronic illness changes a lot about planning and control.
Anyway, I’ve really been touched by reading your blog. Thanks for your willingness to share it.