by Joyce: It's been awhile since I've written. We have been letting Sarah's "A Week in the Life of Me" series take priority. I think it really does tell the story so well from her perspective. What you see, is what you get. For her, life just is. She doesn't over process. She doesn't over analyze. She doesn't wallow over what is not. She doesn't question why things are not what her fantasy wishes they were. She doesn't get caught up in the daily drama that can often define the direction life takes. And truthfully, I am jealous at times. But that is not really the point of this post.
It's summer. My husband and I have been receiving invitations to special events. Just this past weekend we could have been in Atlanta. We were not. And that really bothered me. We talked about it until we could talk no more. We just could not make it happen. The crazy thing is, we finally have gotten to the point where we could afford the plane tickets, the hotel stay, a little sight seeing on the side. Our businesses now have the staffing in place that they could survive without us for a few days. So what's the problem? Sarah.
It's not that SHE is the problem. It is the logistics of caring for Sarah while we are gone. We have very few resources for back up. Our oldest son has moved out. He is twenty four. Working full-time. Engaged. He deserves time for himself. Still, I know if TJ and Julie were in town, they would have dropped everything they were doing and would have stayed with her. It just so happened Julie's sister was getting married in Nicaragua and it is impossible to be in two places at once. Our youngest son is fifteen. He is too young to shoulder the responsibility of caring for his sister while we are traveling. My parents are just not strong enough for the requirements of caring for Sarah anymore. I was racking my brain trying to come up with a solution. I encouraged my husband to go alone. He would have no part of it. He said we are a trio. Plain and simple.
If you do not have a child with medically fragile conditions, I know what you might be thinking. Hire someone. Who, I ask? We've been down that route a few times. Utilizing a few different sources. One respite worker arrived so smokey, I nearly gagged (even though we requested a non-smoker.) From experience we know smoke, even second hand, quickly sends Sarah into a spiraling asthma episode, which could result in her being retrached. So I did only what was necessary and came back home within a few minutes. We hired an RN once. At a rate of $25.00 per hour x 28 hours, it's not cheap. And no sooner did our plane land in Baltimore, when my cellphone rang. Sarah's respiration's were erratic. The nurse was panicked. I was eight hours away while my husband was in Buffalo with our youngest at a hockey tournament. Not a good situation. Sarah used to go to camp. But once she became an adult, the opportunity decreased to one session a summer and not the week we needed.
Then just this week, another invitation arrived. Sarah was jumping up and down when she saw her name...
...and I was jumping up and down with pleasure. The inclusion of Miss Sarah Ely makes all the difference. We thank the sender for recognizing this. Sarah is after all, nearly 23 years old. She is not a kid. In a different life she would perhaps begin to receive her own invitations. Yet in our life, we are a trio. A very happy trio.
I write this not to be a complainer or critical of anyone, rather to educate. If you know someone with an adult child who happens to have a developmental delay or a medical situation, are you quick to exclude them from your plans? Or do you take a moment to think before you invite? It could make all the difference to the family you are addressing. It has to us.