See ya, Austin. It’s been nice!

Little man and I took a road trip to see my sister in Austin, Texas. First trip without daddy. My cousin and her son came with us, which was a blessing. 

First off, why am I so crazy that I didn’t have a tv in my car for man? He LOVES it! Next purchase for sure. 

He had a great time, besides all the teething. He spent Saturday screaming, but we love him anyway. He was catered to, which is what he wanted all along. His ped said she didn’t feel anything, but that doesn’t mean teeth aren’t on their way. I think I see nubs, but I’ve never done this before so I could be wrong. 

He sure is acting like it. There’s just so much spit. 

I hope it comes and goes. This screaming crap all the time is for the birds. 

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A little progress each day adds up to big results!

So many updates, so little time! We saw Carter’s pediatrician today, who said he looked great. She’s really excited for our visit to the neuro-ophthalmologist in March. She’s thinks a lot of Carter’s problem is vision related. 

She also helped to move our geneticist appointment to May. I would still like a sooner appointment, but May is still better than July. I might have an “in” that could push it earlier, but we will just have to wait and see. 

Everyone thinks he’s focusing a little better, but his eyes stay crossed. We think it’s making him dizzy and giving him depth perception issues.

Eh. Enough of the maybe it’s this or that crap. 

Dude has a lot of love in his life. I know that much. 

You are my SONshine, my only SONshine

I am going through a whole slew of emotions as we approach Carter’s first birthday. Some are pretty difficult to handle, some are bittersweet. 

Like how he fights to get out of my arms instead of snuggling into me like he used to. I miss that. I remember begging the sleep consultant to help me get him out of my arms and all I want right now is for him to want to be in them. 

I am feeling the loss of what I envisioned for our first year. Milestones hit. Progress made. When in reality, he’s not much different than he was last June. I am trying to come to terms with how to explain to people why his eyes cross or why he can’t sit up or why he doesn’t care about people, when not I, nor any doctor for that matter, know the reason. 

I’m so scared of this birthday. I should be excited and happy to celebrate my sweet baby and I feel like a terrible mother because of how fearful and protective I am of him. 

I am not ready for all the questions or comments. I just don’t feel like I have the correct information. What do I say? 

That’s a question that I’m struggling to answer. How will I react when I get the questions? I’m normally not too emotional, but will I cry? Or will I be combative?

I am Carter’s biggest advocate. I take pride knowing we wouldn’t be near as close to a diagnosis if I wouldn’t have fought as hard as I do. But with no diagnosis, am I a failure? Did I put him through those tests for nothing? Does he hate me? It’s so difficult to know when he doesn’t give me any feedback. 

Most of the time I am convinced he has no idea who I am and that makes me very sad. 

I also need to stop googling. I am way too familiar with genetic and metabolic disorders. I still wake up every morning thinking of this unbelievable situation. 

My life is crazy. Most of me wishes we had a diagnosis, not just to help heal my man, but to help me find a support group with others who understand. I have people willing to listen, but I need knowledge and help from families going through this. 

When anger turns into tears 

I don’t even remember being this angry in my entire life. Just angry all the time. 

Sometimes the anger can come right after a laugh. It’s crazy how it just sits there, directly underneath all my emotions, waiting to pounce the moment I bend. 

I knew raising a child would be difficult, but this is another level. And the constant worry about our future just presses on me like a boulder that I’m trying to hold up and walk around with…

It’s really hard to accept this life. I love my son, but I’m angry and I don’t know where or who to direct my anger toward. 

I’m angry that I can’t make him better. 

I’m angry that I just want it to be a tiny bit easier, but the older and bigger he gets, the harder it is. 

We see a different doctor for every single issue. EVERY SINGLE ISSUE. And not one can tell me how to help my son. Not.A.One. 9 months of searching. And we are nowhere. 

I feel like I’m drowning. And I’m just so angry I could cry. Every single day.

It’s really become a waiting game 

Finally got in touch with genetics…they can’t see us until July. I just want this over with and now it’s 5 more months of waiting. And that’s even if they find something. 

I really hope I get a cancellation call so we can be seen earlier. 

His birthday is coming up and I just want to be able to easily explain what’s going on should I get questions. Because I know I will get questions. Which is sad. I shouldn’t focus on any of his issues, but that’s hard to do. 

On a lighter note, he has really started to put his hands onto toys and grab them. That’s super exciting! His OT has also been using pedi wraps to stabilize his arms during tummy time. Now, at home, he allows me to straighten his arms and help him push up. It may be for only 10-15 seconds at a time, but it’s such progress! 

I hope to write a post soon detailing all we have been through, in hopes to maybe help someone going through this journey. It really takes patience and advocacy on behalf of your child. 

God, I love this man. 

All clear…now on to Genetics!

I need to breathe. It was difficult to work today. I spoke to Carter’s pediatrician and every test has come back clear. So now, even with no results, she has referred us to a geneticist in New Orleans. Thank you baby Jesus. 

I’ve been waiting and wishing for this day. Now it’s here. I called the geneticist and they will be calling me back to confirm the appointment. I finally might get to figure out the source of his issues. I know there is a chance I might not, BUT I will feel confident that I am doing everything in my power to help my son. 

Everything.

This is a big day for us. My anxiety level just thinking about it is extremely high. It’s hard to breathe. 

I’m happy and sad at the same time. I sort of wish we would have found something from the tests so we wouldn’t have to keep searching, but I’m also happy they found nothing. Because that means he’s cleared on a ton of different levels. 

Still we search. I will search until he is comfortable and happy. 

( I CANNOT get enough of this sweet thang on snap chat) 

My special man and his superpowers

I swear my man can take down an army. Their hearts would literally burst. 

Sometimes, when the demon in him isn’t showing it’s butt, he can be the sweetest little nugget. 

He decided to amaze me tonight. Everything he does is just miraculous. He used both of his hands to grab a toy in the tub ON PURPOSE ANNND bring it to his mouth. I had to grab Casey because I almost fell out of the tub. 

It was the most extraordinary  thing I’ve ever seen. Seriously, my hair could have been on fire while a dog was chewing my leg off and I wouldn’t have flinched. Just to experience those few moments of utter joy. He has superpowers. 

My man. My man. If he can’t do it, no one can. 

Counting down the days or making the days count?

I cannot believe my little will be one whole year old in two months. It’s even more weird that he is delayed so we technically label him a month behind. But it’s reality so, in two months, its a big fat one.

He is still only developmentally 3-5 months. One on hand, I am sad that with every day, he falls just a little more behind and it gets harder to help him catch up. (If that’s even a thing anymore). On the other hand, I am happy he is no longer in the 0-2 month stage!

So though he can’t sit, hold his head up really well or see much, he’s rolling like a beast. He has rolled since he was about 4-5 months, but only to the left. This weekend, Casey and I taught him to roll to the right and he is slowly getting it. I think his side preference is still left. Which is weird as hell since he only ever wants to turn his head to the right. He’s a crazy man.

I also think I am very, very sloooooowly starting to understand his communication. What each scream means, since babbling ain’t his thing. He will converse, though. It’s tough sometimes to figure out if he is excited or upset, but I am starting to get it. It will be a relief when I can nail down his emotions. I laugh in the face of all baby book makers. HA. This child follows NOTHING. Not a damn thing.

I wish something was a little normal around here. Just a little. It sometimes feels like once we get on good footing where something is working, a wrench is thrown into the deal and we end up back at square one. It is a full-time job, on top of my already held full-time job and with all of his delays I find myself wishing his babyhood away. Move on to the next milestone. I want him to accomplish something. Anything. What I would have taken for granted if I had gotten a child who was by the book.

Things people need to stop saying to me, even though I know it’s coming from a place of love:

  1. Once he starts walking, you will wish he never could!
    1. Um no. I WISH upon every star in the sky that walking is in my sons future. He can’t even hold his head up. I will praise Jesus if or when the day comes that he walks…or sits.
  2. Oh no, you don’t want him talking, they never shut up.
    1. Child, you can talk to me 24 hours a day, 7 days a week, 365 days a year. Talk all day, talk all night. He can’t babble and he will be starting speech therapy because he has already been flagged with a language delay. If he ends up being able to speak, TALK YOUR LITTLE FREAKING HEAD OFF. Mama will listen. Mama will listen all damn day.
  3. I know a kid who (dot, dot, dot) or my cousins friends kids eyes did (dot, dot, dot) and they are fine!
    1. We all want him to be fine. Trust me, I would give my life for him to be fine. This journey is treading a little more deeply than fine. I am sure there are thousands of cases where the child turned out ok. But there are also thousands where they did not. Until little man starts to catch up even a tiny bit, hope is lost every time I wake up in the morning.

On that note, I have not lost all hope. Being with him every day puts a smile on my face and love in my heart. Our lives will be ok. We will be ok.

I’ll eat you up, I love you so…

Little man’s birthday is coming up and what better theme than “Where the wild things are.” He is my wild one. 

In the midst of all the planning and hanging out, dude has been enjoying a ton of therapy. Too much, it feels like sometimes. 

We still aren’t any closer to answers, as the genetic/chromosome/metabolic testing has all come back clear. So we sit and wait and play at therapy 4 days a week. I feel like super mom. 

Early steps has been coming to our home and they sent a letter today that man is eligible for an autism screening. I KNEW this was coming and I’m not really surprised, but to see the damn word on a piece of paper in front of me sends me into a state of numbness. 

Autism? On top of everything else? Can something, anything work out for my man? 

It makes me sad to watch him struggle. He wants to do so much, but his little body and mind just won’t let him. And I get to sit here and watch and “hope” he gets better. And blame myself. 

Was it the addition of folic acid to my diet during pregnancy? I was taking it to help his brain develop… Was it the stress I was under the 8 months I carried him? Losing a baby only months before had me terrified of losing him… A myriad of things goes through my mind every single day. 

I live in a state of wonder. Always wondering what I could have done differently for him. I hate living in this state. It doesn’t feel fair. 

How to stay strong? That will be my next google search.