It's Friday and Nick is still sick. He's been sick this past week, ever since last Friday night and not getting any better so far. Waiting for the nurse at the doctor's office to call back.
Isabella is away with my parents in Indiana, from this past Wed. until tonight for a "mini-vacation" at my brother's cottage and with her two cousins. We have a big weekend planned, going to Greg's cousin's house (Connie and Greg) in Grass Lake, Michigan for a big family get-together with Greg's family. Greg's grandmother is coming from Rochester Hills, Michigan and we haven't seen her in quite some time.
Next week is a big week. Tuesday August 18th is Nick 16th birthday. Hard to believe that 16 years ago, I was getting ready to bring this miracle into our lives and the world. How did we get so lucky to have Nick and Bella for kids? I get a little sentimental around their birthdays and really try to reflect on the day they were born. We are going to a Toledo Mudhens baseball game the night of Nick's birthday with our parents and Greg's parents. We plan to take him out for a steak dinner next week too (his favorite!). Then on Labor Day weekend, we plan to have a combined birthday party for Nick and Bella (Bella's birthday in September 20th) for Nick's 16th and Bella's 10th birthday. We rented a cabin at Maumee Bay State Park for that weekend and plan to celebrate with family and friends.
Like most parents, the month of August is the winding down of summer, and we spend it getting in as many last minute fun things before the kids go back to school. Also as most parents know, the back to school process is a job in itself, paperwork, school supplies, school clothes, school fees, open houses, orientations.........
Every August for us is the same as it is for most parents. It's filled with the last plans of summer and back to school. For us, we have Nick's birthday and other family birthdays as well. It's also the time when Nick goes to see all of his doctors and specialists before he goes back to school. So, our appointments this month include his pediatrician (well visit), GI doctor, orthopaedic surgeon, orthotic (AFO's, Ankle-Foot Orthotics) adjustments, new wheelchair pick up and adjustments, dentist, orthodontist, and because he is turning 16, we have a lot of assessments and paperwork for school and to determine his eligibility for MR/DD services. I have 5 packets of paperwork to fill out between the kids for various things. Our calendar is so full, I can't even read it in spots ( I know, I need to get a new calendar system!). Also, Assistance Dogs of America wants to come out this month to see how things are going between Nick and Charger and Nick's OT from school wants to take him out to look at wireless keyboards for school for him to work on. All good stuff, but even after doing this for all these years every August, I still get a little overwhelmed. Nick also had camp this month as I talked about in a previous post and he is going zip-lining for a few days next week with my parents and his older cousin and Dad. WHEW!!!!!!!!!!!!!! I get tired just thinking about it:) In all seriousness though, I've learned to try to take it a day and a week at a time. We DO want to enjoy the last few weeks of summer together so it's best to focus on that. This is all just another example of the "parenthood magnified" thing, meaning we have all of the "normal" things other parents have to take care of and then all of the "disability stuff". We try to take care of it as much as possible before he gets back to school to reduce the time he misses, although he still has to miss a great deal of time for appointments and illness usually.
Sometimes it feels good just to talk about it ( or write about it) once and then "move on". If it seems like I'm complaining, I'm NOT. Just stating the reality of what is. We have a great life as I've said, really, but these are just the realities of having a child (or family member) with cerebral palsy or any other chronic illness/condition. It's just the way it is! I try to let professionals know this when I speak for different classes or groups because I think they need to be sensitive to these "realities" and be aware that there is much more going on than they probably know when they are working with families. Just something to think about...........
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