I think it goes without saying that it’s been a heck of a year. Last Friday was a year to the fateful-day that I left the house to go to the doctor, made some decisions and had the reaction to end all reactions.
Which means it’s been a year of living inside the house, a year since opening windows, a year since – well – everything. And, ironically, the past week I’ve been pretty miserable, sick and unable to breathe because I need some maintenance done on the air purifier that keeps me breathing inside the condo. Yep, even inside isn’t always safe when filters need cleaned.
In some ways, it feels a little disappointing to me that it’s only been a year because it seems like it’s been so much longer. But when I look back on all this year has held for me and all the obstacles that presented themselves, I understand why a year doesn’t seem like enough... I think I lived at least three years worth in this past one. And as much as I feel like I’ve lost stamina and abilities in this year, I also am so grateful for how far I’ve come.
My Cushing’s is getting better, my vitals are getting back to normal and I’m learning to work around some of the other limitations it’s left me with. More than anything, I am so grateful to see myself again when I look in the mirror. I’m not going to lie... I’m not where I want to be. I’m incredibly impatient to lose the last 40 of the 70 pounds Cushing’s has left me with. But the swelling and the deformities that left me looking like a completely different person... that part of it is gone.
Which means that the face I see in the mirror, although heavier, is now mine. That I am grateful for more than anything else. And while I’ve learned a lot of lessons in the past year, the hardest and wisest one came from a very sweet five year old.
When I say I looked scary, that is seriously an understatement. I scared myself. People walked in the door and gasped. Some cried. They all knew me and loved me, but my appearance was literally shocking if you weren’t ready for it. And, more than anything, I was really afraid for the kids to see me. I didn’t want them to be scared. I didn’t want them to worry. I didn’t want them to see the reality of my world.
Susie called one day to tell me about a conversation she had with the boys while driving in the van... it had been a number of months since I had seen them and they kept wanting to come over. She explained to them [again] that I was really sick and didn’t look like myself. She explained to them that I was embarrassed and they might be a little scared.
My Tyler started in with, “But Mom, doesn’t she know she’s the nicest girl I ever knew? She’s also the sickest girl I ever knew. But doesn’t she know how much we love her?”
Silly me. Didn’t I know?
That statement pierced my heart. But it was the next one that made me tell Susie to drive them over immediately. Tyler was talking about how I was the best godmother he has [yep, I’m the only one he has, but I take it as high praise anyway] when Jonboy said to him, “She is, Tyler. But don’t be sad if your godmother dies.”
Here, these sweet little boys who would love me if I was blue, these boys I was trying to protect from being scared of how sick I was, had imaginations that exceeded the scariest reality I was facing. In protecting them from seeing my truth, they created a more frightening one.
Didn’t I know?
In truth, they were scared when they came. There were no big hugs as usual. Jonathan immediately went into the bathroom and Ty kept his distance at first. But then we started talking... he realized the person inside this crazy looking body was still me, and then we couldn’t get him to shut up for the next half hour. He was over it. He saw ME underneath all the illness. Jonathan, it became clear, wasn’t scared of me. He was sad beyond words for me. But my smile became his smile, and hugs were given by the time they left.
I still couldn’t look in the mirror. I still couldn’t see myself there. But I could see myself in those sweet little boys. They taught me a lot this year.
They were over here a few weeks ago, posing for photos as they always do, when they took a vote and insisted we take one together. I look good compared to how I did last summer, but my mind is still completely adverse to my chubby cheeks and thinned out hair. I’m still embarrassed to be the size I am compared to the size I was. But how much I love them is more important than being embarrassed.
So we took the picture.
I’m so proud of them. And proud of how they love me. I’m done with, “Doesn’t she know how much we love her?”
I know, I get it.
And I love them, too.