Isn’t it funny when you post a who am I blog entry, then have an epiphany in the bathtub? It is. I think I’m so lost because I’m no longer the person I was. There… More
I guess I should indicate that I am specifically calling this introductory post, Today’s outlook, because an outlook on any given day can be drastically different. I will say that although life is what you make it, I never in a million years would have guessed that our family with little man would be the way it is.
I should also preface that paragraph to tell you why. We are your typical, southern family. Married to the guy who roped my heart in when we were just teenagers. We grew together in many ways and in 2014, decided to start a family. After a devastating miscarriage, we were successful and I carried a beautiful baby pumpkin for 8 months. We elected not to learn the gender because it didn’t matter to us either way and I have to say, it was one of the BEST surprises in all my life.
Pumpkin made the decision to introduce his/herself a whole month early. Easy pregnancy, non-complicated labor, and 7 hours later, I got to meet Carter Keith. I will never forget my husband yelling out, “It’s a Boy!!” It was beautiful, raw, emotional and a scene I play over and over in my head daily. Carter was a healthy 6.3 lbs and laid on my chest, we stared at each other for what seemed like ages. He told me he loved me, or maybe I just knew it, and I cried because this moment beats every other moment in all my 31 years of life.
Fast-forward to today. Carter has weekly physical therapy and we are awaiting an EEG and MRI appointment, taking place in the coming weeks. The physical therapist, happy with the slow progress, has also recommended us to start receiving occupational therapy. Anything for my little, right? We will do whatever it takes. But how did we get here? It is a question that will never escape my mind. We, doctors included, still don’t know what we are dealing with. Carter isn’t progressing as he should, socially or physically. He has vision problems no one can figure out, movement problems no one can figure out and two VERY motivated parents pushing for every test, visit and therapy we can get him into.
The last 7 months have been the longest, hardest road I have ever been on. I have up days and down days. My up days are REALLY up and my down days are REALLY down. Today falls a little in the middle. The sweet, little rascal I call my son is sleeping and I am watching him. All the love in my chest feels like it will burst, but along with that, I have spent hours, days, months searching his symptoms trying to come up with some sort of peek into our future and what that looks like. Because right now, this limbo is tearing me apart…
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.
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!
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.
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”.
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.
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.
I can’t get enough of his sweet baby cheeks.
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.