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 started, or tried to start, a blog challenge a while back. Though the first post turned out well, for whatever reason I just didn’t continue. I want to try again and really force myself to complete it. I’m, by nature, a very organized multitasker who is insanely good at not completing projects. Today, I’m changing that.
Today. Day 1. What’s the meaning behind my blog name?
I think it’s a pretty simple answer. I picked the blog name for a simple reason. I want to write about our life with my little guy. He is currently undiagnosed with multiple issues and there is this huge world of special needs that exists, I never knew about.
Things like this didn’t happen to people like me and my husband. We have zero special needs members in our family and to be honest, we didn’t know anyone with special needs. I really believed there either weren’t that many people suffering, because I never saw them in public, or something extraordinarily tragic had to happen to cause it.
Neither are true.
I tend to bury my feelings. Or at least I used to. I started this blog to put my feelings on paper. I can say and feel however I want on these pages. This has been a very hard year and I don’t see it slowing down anytime soon, but I want to document the journey. If anyone can benefit from hearing that they simply are not alone, I did my job and I did it well.
So, I didn’t think long and hard on my blog name. I didn’t come up with a fancy smancy pun or catchy title. I wanted something simple that others would be able to understand if they found my blog by happenstance.
Hopefully, it has done its job.
For the past couple of days, every so often, I can catch Carter’s attention. He actually looks into my eyes. It’s only happened a handful of times, but it’s happening more frequently, even to the point that he turns his head and looks at me when I talk. I feel a soul connection with him when he does this. It’s not a feeling you can describe. It’s not of this earth.
I recently read a blog post where a woman commented that these moments are the thin places. It’s the veil between us and a higher power, thinner than it usually is.
I think that is beautiful and I think it describes exactly what I’ve been feeling. I’ve always wondered if he knows me, my smell, my voice. In these moments, I just know. I don’t question it.
I wish it happened more and I pray he doesn’t regress. I live for these moments.
Frozen in time with my man. Just as it should be.
Train your mind to see the good in every situation. Wake up, act happy. Go to work, act happy. Come home, act happy. Eventually I will really be happy, right? I think that’s how it’s supposed to work.
This week has been a little difficult on me. To whoever decided to talk behind my back, that’s fine. I’m ok. Just remember to be perfect the rest of your life. You aren’t a friend. Spreading something I said in a passing moment and personally to you just shows what kind of person you are. Especially when you know what I’m going through. But that’s fine. It affected me for a second, and I’m moving on. I don’t need that negativity in my life.
No one will truly understand the grief and array of emotions you feel every single day, until you live what I’m living. And I wouldn’t wish it on anyone. But damn, it would make it so much easier to explain. I have outbursts and deep set anger and it’s uncontrollable. I’m in therapy and I hope I get the tools I need to cope better. I need to be better at home, at work and just in general.
We still haven’t received the test results yet for Carter’s micro array. It’s been a month now…
He hasn’t progressed much in the last month. He actually lost weight so we are having to give him supplements instead of resorting to a feeding tube which is last on our list. Crossing my fingers it doesn’t go that far.
We have him in a little walker and he bounces a few times a day. It’s strengthening his legs so he is wanting to stand more often. I will say he is sitting in his bumbo better than he used to and eating more.
We are keeping on! Keeping our heads up! Smiling!
In the inspiring words of Mr. T Roosevelt: Just believe you can, and you’re halfway there!
I’m patiently awaiting Carter’s chromosome test results, and my first counseling appointment. Neither can get here soon enough.
I’m tired tonight. Body tired. My mind is running freely even though I’ve tried to quiet it down.
All the “what-ifs” that I can easily throw on the back burner during the day, dance back out into the open space of my mind. The open space I’ve been trying to quiet.
Social media makes it worse. Friends having babies make it worse. Friends with kids make it worse. Kids make it worse. I’ve tried my best to act happy, be happy, but I’m at home in my bed. Alone. The one place I don’t have to pretend. I can let tears flow and let my heart ache.
It aches for so very much. It aches to know a future, a meaningful future, with my son. I feel like a failure. I feel like I let Carter down. He’s not ok, and I can’t figure out what went wrong or how to help him.
I feel like I let Casey down. This may very well be his only child and he prayed for a son. A son to play ball with. A son to hunt and fish with. What if Carter can do none of those things? Will Casey be satisfied if he can’t?
I also feel like I let my family down. Carter is the only grandchild they have close to them, they also wanted a little boy. He isn’t learning and growing like he should be and I feel terrible that my parents don’t get the satisfaction of a child that engages or returns their love.
What if he never engages? If all the therapy is essentially doing nothing? What if he never knows me or how much I love him? What if. So many what ifs.
Tonight is hard. I’m sure I’ll bounce back and this will happen again and again.
I just want to sleep.
How long, I’m not sure. Im so proud of my dude. His blood draw was simple and easy and he did so well. Not to say he was calm by any means. Nevertheless, he did beautifully.
The chromosome array will probably take weeks or months to come back. But it’s done. The blood is out and gone. I’m happy to be in this moment.
He is growing…slowly. Still following his own curve. His head is, and always has been, on the chart and growing. Something the pediatrician is very happy to see. It means his brain is growing at the right rate. Small dude, big brains!
We have started to brush his two very small, not even grown in teeth. He likes it, so I like it. He has also increased his food intake with no more gagging, which is great.
His check up noted how very floppy he is in his trunk, but his hips and legs are perfect tone. So though he cannot sit up or reach to hold anything, he will stand forever.
That’s where we are today! Hopefully we will have some updates soon regarding his testing. Prayers all will be well are always welcomed.