March 2020… we had saved and waited all through my nursing school to celebrate at Disney. Then, just a week before we flew out, the world shut down and I shifted everything to be a nurse in a pandemic.

Unfortunately, COVID got me, and my family, and it seems to have triggered something in my already ill daughter that has caused her to progressively get sicker and weaker.

we thought we had time- we would wait until she was better. Of course she would get better!!

Until last month when we were given a blunt outlook- she is not getting better. She has lost significant function over the past 2 years; she is unable to walk, she is in a wheelchair, attached to an IV 24/7, and now on oxygen. The drs believe she has a mitochondrial disorder, which is causing her muscles, organs, intestines, etc. to not get enough oxygen. We don’t fully understand what is happening, what is the cause, and what to do. At best, drs say she is not going to get better, and that we should consider how much energy she expends on trial treatments, and weigh the risk vs benefits.

Drs also have told us that it’s time to focus on quality of life… that while we don’t know if this will limit her time with us, it’s already limiting her ability to enjoy and participate in life.

and so it is that we are planning a bucket list trip. Unfortunately, January is about the only time we can handle the heat in Florida, and we don’t know what another year of waiting will bring.

I know that many are struggling, and I would never ask anyone to sacrifice for a trip, regardless of the reasons. That said, I have received many offers for donations if we were to set up a fundraiser, and while I’m not thrilled about asking for help, I am aware that my options are very limited.

We attempted to push back a mortgage payment and are unable to do so until we are late. We also are attempting a refinance of our mortgage (irrrl) but the rates aren’t much different than what we have, so it may not be feasible or helpful.

Please- do not feel obligated to donate towards this trip, but if you feel led, we are grateful.