I get comments a lot from people.
*God only gives special children to special people.
*I can't imagine what you do.
*This must be so hard for you.
I understand how people can think that.
But let's be honest with each other. This has never been about me.
It's about my little hero. David.
First let's start with God only giving special people special kids. I actually hate that saying. Don't sugarcoat it. Don't make it seem like my child is anymore special than any other child in this world. I do believe that God had a hand in myself & Michael being David's parents. I was spoiled before I started living this life. I truly didn't think I would ever spend my life giving all of myself to one person and letting everyone else get the bits and pieces that I have left of myself. And sometimes that's not a lot. I wasn't special before I had David. But David made me a different person. I'd love to think that David had a hand in choosing me as his mom. Kinda like saying "Hey, God. She doesn't know it yet. But she needs me in her life." So maybe I was chosen for this form of motherhood. But I don't think it's about the fact that I could handle it and you couldn't. I just needed David. To teach me what I truly wanted to be.
You can't imagine what I do? No. You can't. I share A LOT on this journey. But there are some things that only close friends and family know about that we have to do to provide comfort care for David. It's gross and I don't like to do it, but I do it for him and it helps him. And I choose not to share those details for his dignity. He deserves that. And even the things I do choose to share sometimes aren't the most pleasant things......but I would love to believe that you would do the same things for a child of yours. I would do ANYTHING to make sure David was comfortable. And it makes me sad when he's not comfortable. So I will do anything in my power to provide him with a good quality of life.
And the one that gets me the most.
This must be so hard for you...…
Yea. No shit. LOL
But guess what? It's not nearly as hard to be me than it is to be David.
I feel like even though I don't know firsthand what it's like for David......I'm the closest thing he has for a voice.
What do you think it's like to live in a mute world....he's profoundly deaf....and not have any form of communication with the rest of the world other than his demeanor? What do you think it's like to show that you're angry or upset or hurt and still not have your people be able to figure it out??
What do you think it's like to have lost the ability to swallow? To be sick and to have extra secretions and mucus that you desperately try to cough up to clear because you can't swallow it, but don't have a strong enough cough to do the job, so you choke on it instead. To have your parents have to stick a suctioning device into your throat multiple times a day to try to clear it out for you??
What do you think it's like to have a body that is continuing to atrophy and work against you? To not be able to walk? Or stand? Or hope that someone comes in to get you out of a little tiny corner that you've gotten yourself trapped in and just couldn't wiggle yourself out of?
What do you think it's like to have to wear diapers at 18 still? To rely on someone else to keep you clean and dry and sometimes not realize that you're not until the normal time they normally check on you for that situation?
What do you think it's like to be DAVID???? It's freaking hard.
So. Freaking. Hard.
But day after day I watch him do hard things. He will dig to the bottom of a toybox to get that ONE toy he wants. And it might take him 10 minutes. He scoots on his back to get pretty much anywhere he wants to go. Backwards. Pushing back with his heels and looking upside down. He walks in a gait trainer at school. I get videos of it. And he's not doing it perfectly.....he's flipping doing it.
Yes. It's hard to do what I do with David.
But it's also harder for David.
But gosh darn it. If that kid can do super hard things...….then I can do hard things.
For him.
