I remember holding my first little baby in my arms for the first time and promising her I would do everything I could within my power to make her life as good as I possibly could. I was going to show her the world in all it shining, shimmering glory. Because there is so very much to see. If you are a mother you might have had a moment just like mine, because motherhood changes us, not just physically, but it changes our hearts. Our children are literally our hope for all that is good and worthy of fighting for in this world.
At age 9 when she got sick for the first time and suffered irreversible sight damage, I began to realize that “my” plans for how things were going to go for her didn’t really matter anymore. And that sometimes at even a young age, life can hand us a whole big bag of garbage we have to figure out what to do with. And I remember sitting by my sweet little girl as doctors told her there was no way to fix what was wrong with her. Heartbreak isn’t even close to explaining how an experience like that feels. How do you deal with children who are suffering? I am no expert, but I’ve lived through hard things, and what I can tell you is that the only thing you can do is to love. And to hold on with all you’ve got. That’s it. You just keep hoping, praying and taking one step at a time.
During one of her recent “flares” the words from a Shawn Mendes song affected me deeply, as it very closely described a little sliver of what her struggle feels like:
Help me, it’s like the walls are caving in
Sometimes I feel like giving up
No medicine is strong enough
Someone help me
I’m crawling in my skin
Sometimes I feel like giving up
But I just can’t
It isn’t in my blood
She hasn’t given up, and neither will I. It isn’t in our blood.
This next year she will be a Senior in High School. She wants to make plans like all of her fellow students, but even that has it’s fair share of difficulties. If she goes into the medical field like she wants to, will she be able to see by the end of it? Tough questions for a 17 year old.
Especially since the last 2 years have seen a ramping up of her illness with 4 separate flares. No one knows how much time they have to do anything, but it hits especially hard when you live like she does. Not knowing if tomorrow will be the day you finally wake up blind. Or perhaps it will finally be the day her disease fully manifests and she will no longer be able to walk or talk.
We aren’t hopeless. There is so much good out there, and no matter what the future holds for my beautiful daughter I know she will take that future and run the best she can with it.
To that end, I want her to see the world. Or as much of it as she possibly can right now in a way she might not be able to at a later date. She wants to see Paris, and as many places as she can. To help her do that I launched a little GoFundMe campaign. You won’t be any less a part of my circle if you don’t donate, but if you are able, that would be truly appreciated. With your help, maybe she might be able to see a little more of the world than we had planned.
Love,
Jen
