Day 12: Statistics

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. 

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Day 11: The Future

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. 

Day 10: My Favorite Blog

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. 

Day 9: Not just a mother

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? 

Day 8: What’s in my go bag! 

Carter is not too bad a traveler. He has more equipment than most, but as far as a bag we take everywhere, he’s pretty simple right now. Our bag includes:

1. Noonies. You better have 5 on hand or lord help you. 

2. Burp clothes/bibs. Unless you would love to smell like vomit, I suggest quite a few of these.

3. Adding on to #2, a change of clothes for bear AND for you. Because life. 

4. Formula, food and medication. Those are musts for any baby. Mine has an insatiable hunger and will scream as he is being fed food he wants. We are a complicated couple. 

5. Something that lights up or something that plays music. You want him to calm down? Better have one of these on hand. 

6. Nose sucker. The child has boogers like no other.

7. And now, his iPad. You better have his shows ready, or he will make you pay for it.

Not too out of the ordinary. We grab all of these things every single place we go! 

Day 7: 5 things I would change 

Oh, I feel like I’m going to get heat for this one. Here it goes anyway!

1. I would change my attitude. I wish I wasn’t so fearful and anxious. I look so far into the future, I never enjoy the present. 

2. I would change Carter. Hear me out. I love my son with all my heart, but I HATE watching him struggle with no one to help him because we aren’t sure how. I wish he could see and hear and do things normal kids could. 

3. I would change the way the government treats special needs families. We get hardly any help and we pay our taxes and work 40 hour full time jobs contributing to our communities. No help. Nada. 

4. I would change perspectives. Get to know more special needs families. Learn how to communicate with them. They might be more similar to you than you think.

5. It takes a village. I would like to create a support group in my community where families with children or adults with developmental disabilities can meet. Help each other with respite care and share experiences. My community is silent. They don’t talk about these kids or adults. It’s like they don’t exist. I would like to change that way of thinking. 

Day 6: A letter to the president

This one is difficult. I’ve only been doing this for one year and am still learning a lot. I’m not sure what I would say or ask for because I don’t know what we need. I am going to change this to “A Letter”. 

Dear world,

Before I had a special needs child, i had no clue this world existed, which I am sure that you and 95% of others feel the same. The world of genes and neurodevelopment and doctors and therapy… I assumed doctors could fix almost anything. They knew the issues. 

I also attributed intellect and disability to something the parents did wrong. 

I was so wrong. Now that I have my son, my little puzzle, I realize the stress and hardship these families go through. I am terrified that he will be judged or treated like some type of object and not a human being with feelings and emotions. 

I ask that you, the world, be more kind. Think before you speak. Treat others how you want to be treated. You have no idea what someone else is going through in their life. 

Carter may not respond like a typical baby, but he loves to laugh. He just wants happiness, like everyone else. Don’t treat him like he can’t see or hear you. Touch him, hold him. You won’t catch his delay. He isn’t sick or stupid. Maybe you aren’t funny? Maybe that’s why he doesn’t laugh at you…

I want inclusion. I want him to be able to have a happy, productive life and experience what every child can experience. I want him to exceed goals and be proud of himself. I want him to know he is so loved. By so many people. 

I want you, the world, to be more accepting of those with disabilities. We are better than we were years ago and we can only move forward. 

And you people who produce special needs equipment. I get supply and demand, but we are already paying a shitload of money we don’t have to assist our children in living. Doubling the price of a car seat because it swivels and labeling it special needs is not ok. 

You government and insurance company people. I don’t know quite enough about your jobs to tell you how to do it, but I know a little. I know that my husband and I are doing every single thing we can support our child. We make next to nothing but our income exceeds support? Or you won’t cover basic supplies my child needs to survive? It’s ridiculous. Begging you to cover the only formula my son can consume because he is failure to thrive is laughable. He can’t live without it. That means nothing to you? A little babies life? Something needs to change. 

I digress. 

All in all, I want Carter to be accepted and I want to be able to provide for him. Both of which I’m unsure of. And it’s scary. 

Thanks for listening. 

Day 4: My proudest moment 

You would think with Carter’s snail like progress that there wouldn’t be much to be proud of or that this would be an easy question to answer because not much happens for us. Not true.

I’m having a very hard time choosing one moment. I am proud of every single thing Carter does. From making eye contact with me to his hand making it close enough to the bottle to touch it to putting himself to sleep without help. I live in amazement of my son, at every little thing he does because I know what it took him to do it. 

One might also believe that the proudest moment to pick would be something incredible, like sitting alone for a lengthy amount of time. Or reaching for an object. 

No. If I had to choose my proudest moment it would be splashing in the bathtub. It’s the only time I have ever been able to help him associate a word with an action. He splashes, he laughs, he understands. I enjoy bathing with him and I look forward to our minute or two where we splash. 

I am just as proud now, as we splashed tonight, as I was the very first time. 

Day 2: Ten things you might not know about me

This blog is lovingly dedicated to my son, but I’m stealing his thunder for one post. 

10. I’m borderline obsessed with anything Disney-related. I would quit my job today, if I could make a decent living being a Disney princess. They have already let me know I’m just too small, even for tinker bell, but who cares. Follow your dreams, right?

9. I hate socks. I hate the seams at the toes. The thought of my feet having the life sucked out of them by those monsters makes me cringe.

8. I get overwhelmed pretty easily. A restaurant menu will set me off. I don’t do well with a lot of options and the idea of making the wrong choice. I am also a perfectionist, or was, which makes a lot of tasks not doable. I’m an everything has its place kind of girl. 

7. I love the feeling of falling. I search for it. From roller coasters to bungee jumping. I even like going a little faster than I should over a bump in the road. Why? No idea. I like the adrenaline and feeling like I’m alive. 

6. I love horror movies. Not bloody, gory horror movies or exorcist/shining horror movies. Horror movies that could 100% happen. I love to be scared and ghosts are a serious passion of mine. But don’t even think of taking me to a fake haunted house. Hell. No.

5. I LOVE live music. Music in general is food to my soul, but there is something about the energy of a live show that I crave. 

4. I should have either been a marine biologist or in forensics. I find science completely fascinating. I’m not sure how I ended up in non-profit..

3. I look at my life and memories as before and after Carter’s birth. I am a different person now, in so many ways. I am constantly dreaming of my life before all the heartache, but I can’t imagine him not in my life.

2. Little Debbie cakes are my weakness. I’m generally a very healthy eater. I cook every night and we very rarely eat out. Put a little Debbie cake in front of me and will devour the box in 2 minutes.

1. I’m a loner. I’ve always been independent and ok on my own. I think that’s why our situation has affected me as it has. My selfishness still hasn’t worn off and there are dreams I want to accomplish.

And through it all I will.