One of the AS patients who died this year had a wonderful mother. Yes, she didn’t see how bad things were, thought her daughter had to just buck up and get on with it till she realised she was in liver failure, but in general, she was a loving and supportive mom and an amazing grandmother.
It made me glad that my mother figure (Step mom in law) is far away. She can’t see what I go through. She already feels so desperately worried the few times I mention it that I don’t ask how she is on my worst days because I know she will ask how I am.
Then I realized that though my biological mother wasn’t the best, that I didn’t have any recent heartwarming memories, I DO have those who care about me. Who contact me purely to check on me, not to use me. Those who send messages because they love me, not because they want something from me.
I see it in their actions. In the way they study the various conditions my children have, in how they share videos that remind them of my children, in how they try give (money) because they aren’t here to do (anything for me.)
They are my blessings.
I am thankful for every true hearted query. For every well thought out sentiment. For every, “Oh no, that means you’ll have a terrible day” after I relate something I did that will tax me or have bad consequences.
Like allowing my daughter to sit on my lap for a very long time as she made me read two books to her despite how the enthesitis in my pelvis has been raging.
My husband was saying this morning that he’s got grey hair because of me. In the past, I was sick but it was random issues, random surgeries and we were en route to diagnosis and HEALING. But now, now he knows there’s no cure at all. There’s no healing. And it gets worse… It’s knowing that we are trying treatments. Trying. We don’t even know if this Enbrel is the magic bullet or if we will have to keep trying and failing while the disease keeps on stealing my mobility from me.
It’s scary.
But we have our blessings. And we are thankful for them.
They said I should write a book 