Seems simple, right? It’s not.
Someone recently asked me what my hobbies are and what I love to do in my spare time. I literally couldn’t even make up an answer. I don’t know who I am anymore.
I’ve surrounded myself with so much disability that I could damn well pass for a doctor, but I don’t feel human.
I can’t even remember the last time I did something for myself. I can’t remember the last time I voluntarily googled something that wasn’t about diseases or disability.
I couldn’t remember the word “familiarize” today. I’m ashamed.
On top of that, it’s really all anyone wants to talk to me about. I don’t have much adult conversation beyond Carter. I truly appreciate everyone reaching out and loving him so much that they want to follow every step of his journey. We are blessed. But I want people to remember that I’m still a girl.
I like music, space, dinosaurs and horror movies.
I want to talk about my day, I want to talk about ideas, I want to talk about life. I want to hear about your life.
I’m not a mom who has a child with disabilities. I’m just a mom to a sweet little boy. He’s a little different, but what’s good about normal?
This last month has been one of the most stressful times in our lives. Managing my sons care is enough without now having to shop for a new job. Stressful…and I use that term loosely.
Where do I start?
Since Carter’s micro array came back normal, we have pursued whole exome sequencing. We got extremely lucky that insurance is picking up the entire cost. Thank you to the heavens.
That blood test is actually happening in a few hours. I should probably sleep, but I ran out of sheep and I’m starting on numbers. Crossing all of my appendages that we get a hit. It would be mighty miraculous.
Carter also had a scope surgery done last Friday. Everything was normal so we have started him on elavil for abdominal migraines, hoping this stops or lessens his vomiting. Poor thing has been vomiting every 2-4 minutes his whole short life. I can’t watch it anymore and am pushing until it stops.
Positive moment of the day: my dude focused on me today. He heard me, he responded, he laughed at my face. It was the best feeling I’ve had in a very long time. His inchstones make you forget there is this whole other world of bills and adulting. It’s just us in that moment. Nothing else exists.
I don’t really like to concentrate too much of my time on statistics. They don’t define our life or my baby.
Maybe once we get some sort of diagnosis, that might change.
As for now, the only one that matters is 80-85% of parents that have a child with disabilities, will divorce.
That matters to me because the backbone of our family is my marriage. Disability or no disability, my husband comes first. We need to be happy and on the same page in order to be the best parents we can be.
Having a special needs child is difficult and can put a strain on any marriage, even a strong one. Not only are Casey and I experiencing extra special needs, we are doing it as first time parents. I consider us seasoned veterans at this point, with all the shit we have been through.
Together, we are a force to be reckoned with. We know the difficulty and we fight it. We fight with all of our might and all of our love. And I swear to you, we will still be standing when this fire dies down.
The future, something that never escapes my mind. What position will we be in? Will we know what’s causing Carter’s issues? What will he look/act like? Will he know me by then? Will he still be alive?
The questions and concerns haunt me. I’m not sure whether it’s a future I look forward to. My experience with motherhood is nothing like I thought it would be, so thinking about my upcoming experience with the future is terrifying.
Carter is still small enough that strangers don’t stare. They still believe he’s 6-9 months old. So a floppy baby who doesn’t give you any feedback is semi-normal at that age. How will I react as he grows? I probably need to craft a blanket statement, ready for those moments.
Will I be able to maneuver him around as he gets heavier and bigger? I’m 5 ft, 95 lbs. At 19 lbs, he’s getting pretty heavy for me.
Will he be able to learn? Go to school? Will he ever calm down? I could go on. I know the future is not promised to anyone and these are quite likely concerns of most parents, but I bet the majority isn’t thinking about whether you would be able to care for your child at home or have to place him in residential care. I bet not.
I try to be hopeful. As hopeful as I can be. Will we have enough money to enjoy life and care for him? I don’t know. I don’t know anything at this point that could even begin to point me in some sort of direction.
All I can do is hope. And advocate. I’m angry and frustrated at the system that’s supposed to help us and create a better future for my family. But they chose the wrong mom, because anger is a hell of a motivator.
Or maybe they chose right.
So. Difficult. I have so many favorites.
If I had to pick one though, it would be Love that Max by Ellen Seidman. She is real and honest. No sugar coating. And she loves her son with a fierceness.
I refer back to it daily to remind myself how lucky I am to have Carter, things to expect or feel in the future and ways to help us learn together.
It’s been enlightening to say the least.
If you’ve never checked the blog out, or have any interest at all, you should.
My 30 days are going to be a little expanded…
I had a good post in mind for this one. Then this week happened and I got lost.
I thought I knew who I was. Now I’m not sure I do.
In addition to being Carter’s mother, I am his therapist, his teacher and his advocate. I am also a daughter, a sister, a wife and a friend.
I’m a dreamer and a doer.
I’m finding myself again, in a very unexpected, but welcoming way.
I am excited for my new opportunity to redefine who I am and how I make my mark in this world.
Who knows who I will be next?
I haven’t gotten a chance lately to give everyone an update on Carter’s progress. It’s small in nature, but big to us.
He is currently seeing a Physical therapist, Occupational therapist, Vision therapist and special instructor. They all come to our home now, which makes it very easy on all of us.
We have learned a lot about Carter recently. His mannerisms, his communication style. It’s quirky and it’s his. I hope to share some so when everyone meets him, they have some background.
I want everyone to have a happy and positive experience when they hang with my dude. I say that because Carter doesn’t really give you any feedback and does not react to voices or faces or noises like a typical baby. BUT, and that’s a huge but, if you know my mans mannerisms, you will be more prepared.
Here are some pointers!
- In addition to Carter avoiding eye contact, his eyes are also crossed. Pointer 1: the eye that is crossed is the one looking at you. Pay attention to that particular eye.
- If Carter is on his back, he WILL look at your face. He will follow you. Not every time, but most of the time.
- When Carter throws his hands in the air like he just don’t care, it’s stimulating. Let him grab your face or a toy. He will inspect both.
- Carter likes rough play. He thinks being drug on the ground or flipped upside down is hilarious. If you want him to laugh, be rough. (Or be me. I’m amazing.)
- He will not babble in front of strangers. If he hears voices he doesn’t know, he will be silent. He will stare in one direction and that means he is listening.
- He will vomit. Period. For no reason. Guard yourself.
- He’s cool in 15 minute increments. Be prepared with a different activity every 15. Or you deserve whatever you get.
- When Carter is irritated, he stiffens up and puts his hands behind his head. Don’t freak out. Calmly say no no, and be soft with him. He will calm down easily if you give him a safe space.
- He will not turn to your voice. No matter how hard you try. Enjoy him anyway!
- He’s a hoot.
I will update as I learn more, but this makes me feel good and positive. The more we know about Carter, the more we can help him be the best he can be.