We did not choose to become parents of a special needs child, the choice was made for us. And as parents of a special needs child, we have been introduced to and become friends with other families with special needs children…some local, others across the country. One of those families is mourning the loss of their son who put on his wings two days ago. Please say a prayer for them, and all of the other families who are dealing with medically complicated children. It doesn’t have to be us. We know that there are several of you who pray for us every day, and we appreciate it.
This may sound weird, but we feel them. I think James does, too. We don’t know what James comprehends or understands, but I like to think that he feels the love that people send his way. So, keep the prayers coming for James, but also say some prayers for other little boys and girls like James that are struggling medically.
Sorry to start out on such a somber note. I’ll try to change the tone for the remainder of this post, but I’ll admit that the last couple of days have been a bit hard. When a kid from our special needs community passes away, it just kind of hits you. It’s a reminder that life is precious and short. For these kids, life can be much shorter. We don’t know how much time James will have, but we do plan to give him the best possible life, however short it is.
One of those blogs was Love That Max. Ellen Seidman, author of the Love That Max blog wrote an article that was recently published on Yahoo!Life titled “How Travel Transformed My Special Needs Son’s Life”. It reminded me of how much fun Stacy and I had on our many road trips before James was born. While many of those trips took us to Nashville, our favorite city, we also took road trips to Wisconsin for a family vacation, Minnesota for a country music festival, Iowa to visit one of Stacy’s friends at college, and Alabama after my dad had a stroke. The best trip of all, hands down, was our honeymoon when we drove Route 66 start to finish…all the way from Chicago to the Santa Monica Pier.
In the article, Ellen quotes her son Max’s neurologist as saying “expose him to as many new experiences as possible. They’ll help his brain grow.” Road trips are full of new experiences. One of the best things about a road trip is that it’s not always about the destination. Sometimes it’s those downhome restaurants in small no name towns that have an open-faced meatloaf sandwich that was so good that you’ll never forget it. Sometimes it’s stopping to see random oddities along the way. It’s all those things that you would miss out on if you just hopped on a plane and went from point A to point B in the quickest amount of time. With all of the equipment James comes with, I couldn’t imagine taking it all on an airplane anyway. Now if we could just get James’ health back in line, we can start planning a road trip. I think we could all use a vacation right about now.
Health Update
Speaking of his health, not too much to update here. His sleep schedule has been off a bit because of the lingering digestion issues he’s been having. He’s been getting up at around 3 am with what appears to be some discomfort because of those GI issues. And what usually happens when you wake up early? You go to bed early too. He has been doing a pretty good job of staying awake during the day, but by 5 pm, his body says it’s time for sleep. And the cycle repeats…falls asleep early and gets up early. It’s been a little rough on Stacy because she’s the one that gets up with him.
Fortunately, I’ve had a couple of snow days this week and didn’t have to go to work so I was able to pitch in and take care of James so Stacy could catch up on some sleep. We still haven’t gotten an answer as to why he is having the GI issues so for now we’re just doing our best to slowly increase his caloric intake without overwhelming him too much.
Face Painter
One last thing I want to include before I finish this post. Stacy was flipping through the latest issue of Chicago Parent magazine the other day and stumbled across an advertisement for a face painter.
This is the face painter that was at our Rollin’ for James fundraiser, and his 5th birthday party. She does awesome work, so if you are looking for a face painter for your next party or event in the Chicagoland area, give her a call or check out her website.
