I’m finally coming up for air from Easter weekend. And I’m still exhausted…mentally.
As with most holidays since receiving Livvy’s terminal diagnosis that stripped her of her abilities to walk, talk, and enjoy so many things in life, I dread them. Holidays are no longer what they used to be. They’re all now a glaring reminder of everything our daughter can no longer do.
While you would probably never know that by seeing me during the holidays because we keep things as absolutely normal as possible for the girls, I have to mentally prepare before each one.
How do we keep Livvy as involved with her sisters as possible? What “toys” do we get her now that she can’t even hold on to anything? What can we do to still give Keira and Eva the same opportunities as we normally would but not exclude Livvy? How can we have her help us decorate? Will the clothes we order be stretchy enough to go over her arms when she’s having trouble straightening them? What equipment and supplies should we bring if we have to go to a grandparents house? The questions go on and on.
It’s exhausting. And stressful. And sad.
But these are the things parents of children with MLD have to think about.
Not to mention the fact that with each passing holiday, we are one more holiday closer to her not being here. Which, as I write this, I suppose is a true statement for all of us but not a thought that is as omnipresent as it is for a parent of a terminally ill child.
Will this be her last Easter? Her last birthday? Her last Christmas? I think that thought on every holiday.
This Easter was particularly hard because Livvy was battling her 5th UTI in a row, spiked a fever and then had a seizure the morning we were going to take them all to meet their cousins at a nearby farm for an egg hunt with fair rides.
With an Easter excursion out of the plans for her, it was all about rest, relaxation, keeping her food and meds down and doing whatever we could to get a smile back on her face.
Thankfully, we got a new, additional medication prescribed (Augmentin), and it’s doing the trick to get her well. We are hoping it keeps these infections at bay (since Keflex did not) as we prepare for her 5th birthday next month. A very happy occasion, absolutely, but another event that will take its toll both mentally and emotionally.
To my fellow parents of terminally ill children: stay strong and don’t feel bad about taking a break after the holidays. I know I always need one, and Lord knows we ALL deserve it! ❤️