Tomorrow begins the spring holiday where I live. My family is looking forward to spending time with our extended family and friends. Because many of the activities we will pursue are not well suited to my son, he will (we hope!) spend a week at a respite facility. Much as I love him dearly, I know that if I don’t take a break from the care it is just a matter of time until I crash. Add to that that I firmly believe that my other kids need some time that is not organized around their brother’s needs and respite has been part of our lives for most of Matthew’s life.
A few days ago Matthew spiked a fever throwing the entire March Break into question. Quite reasonably, respite facilities here won’t accept a child who might be ill. There are other medically fragile children who cannot afford to be exposed to a potential virus. The risk is too great. Viruses can kill children like ours.
Thankfully it was a brief blip and Matthew looks fine. He will head in to respite later today. However, because his status has been unstable lately it has already had a bit of a domino effect on our holiday plans. One parent will delay departure to the sunny south by a few days to ensure the kid remains stable. This parent will also return a bit earlier ensuring that the number of days where both parents are away is minimal.
There seems to be something about Spring Break. Last year our entire respite admission was cancelled because our respite facility was shut down by public health following a viral GI outbreak. It meant I missed a flight and provided a week of care without help.
Because that’s the other part to all of this. When we book respite we cancel all our in-home care supports. So losing respite not only means our vacation plans are scuttled, but it also means that we are now providing 24/7 care with no assistance. Our badly needed rest is replaced by extreme care beyond what we normally perform, which is already pretty extreme.
We are crossing our fingers that all remains well and this holiday will proceed without any more modifications.
This first two weeks of blogging have been more fun that I imagined and I thank everyone in my “real life” for being supportive and encouraging. I will be taking a blogging break for March Break and will be excited to return on March 21.