for the people who know me for a long time, you know that something is up when I don’t share crazy party ideas and cake designs to challenge my skills.
Yes I have been unusually quiet about Tomas’ first birthday party. Since Sara’s death every anniversary has turned everyday tasks into tall mountains to climb. As I sit here, freshly out of the hot bath to temporarily relieve the constant pain, I have very little energy for climbing mountains for superficial reasons. I have been dreading this party since surviving Christmas. With every passing week his developmental gap is getting bigger and bigger. As the year mark creeps closer so do the tears. After yet another nightmare year we found ourselves holding our boy with tears of sorrow pouring down our cheeks. We have not a single milestone to put checkmark to.
It has been a very mentally exhausting exercise to meet up with our friend, her boy is one moth younger than T. It is heartbreaking to see his typical progress, while T is still laying there unable to turn or to reach for anything. We love our friends dearly and we are happy for them, but that doesn’t make our pain any different. I find myself desperately trying to avoid other people’s kids of our boy’s age just to protect my sanity. But at the same time I know I have to live through this cruel exposure therapy.
Society expects certain things, and celebrating your baby’s birthdays is one of them. When the only reason to celebrate is to mark the 365 days he has been breathing, it’s a bitter pill to swallow. Just add 715 days since our girl took her last breath. Let’s have a party, shall we?
I know it sounds horrible and also ungrateful, but when the list of things to be grateful for is something like “he is alive, he can swallow food, he is generally happy” you can’t escape the feeling that the bar is pretty fucking low compared to the rest of people around you. But I have to remember we live in the “other world”. And in that one we are pretty middle of the field, no hospitalization this year, seizures currently responding to medication, no regression. Pretty awesome one might say.
It has been tough, we are turning into some hardcore people, the people who joke about our son’s disabilities, because when you have no power over something you MUST learn to joke about it. Because that’s the only way how to assert your power over the feelings evoked by his disability.
So here we go, it’s time to crush the meds, and start vision and Physio followed by OT (feeding solids), then walk outside. Hopefully just couple seizures before he falls asleep . Cooking and cleaning while he sleeps and look forward to 6 o’clock when J comes home…
I love my baby, I have a wonderful husband and amazing community of people around me, so let’s party… a little 😉
ktojoy 