Parenting a child with a delay or disability, known or unknown, is hard. I imagine parenting any child is difficult, but this journey is exhausting. I feel like I have to put on this strong, brave face everyday and pretend that I am getting through this easily.
People especially don’t like to hear me mention the difficulty. They don’t want to hear that some days I just don’t want to do it all. Some days I’m so worn out, so exhausted, so anxious, that forming words is difficult.
I constantly think of my life pre-Carter. I had no idea what was in store for us. I think of refusing genetic testing while I was pregnant because I thought I could handle anything. I also thought it was a one in a million chance there would be an issue because I did everything right.
I got my one in a million. Do I feel lucky? Sometimes. Do I feel unlucky? Sometimes. I struggle with my emotions toward this situation. It’s also difficult to make people understand that I do NOT struggle with my emotions toward my son. He is my life. He is all I think about every day. I love him with a love I can’t describe.
I have also noticed that there is a permanent knot in my chest and stomach. It never goes away. The appointments, the therapy, the tests, the not knowing…I live my life scared.
Today was the day I noticed it. I felt a panic attack coming on this morning traveling to the geneticist visit. I felt sick after I ate lunch and I’ve felt sick since. I can’t eat dinner.
How do I take care of myself? Even if I try, I still feel like crap.
Hoping to get more answers today only led us to more damn tests. More pricking my son with needles and more waiting.
God, why? Why can’t this be just a little easier? A little cheaper?
I need to rest. I need to get out of my head. Being in there takes me to some awful places sometimes.
The day is here. Today we travel to Houston for our first specialist visit with the neuro ophthalmologist. We also get to see a developmental pediatrician and pediatric neurologist.
Is it possible to be scared and excited at the same time?
I’m about 90/10.
I wish we didn’t have to go through this…I wish everyday for a little more normal.
I don’t even feel like the same person I used to be. I feel weaker, but I also kind of feel stronger. It’s a weird balance.
I can’t imagine ever thinking of having any more children. This has been quite the experience. Not necessarily good, not necessarily bad. It just is.
I get a Carter out of it all and for that I am grateful. But if he isn’t happy and hurting and can’t enjoy life, how do I deal with that? How do I deal with the fact that I gave him this life?
The questions continue. The struggle continues.
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:
- Once he starts walking, you will wish he never could!
- 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.
- Oh no, you don’t want him talking, they never shut up.
- 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.
- I know a kid who (dot, dot, dot) or my cousins friends kids eyes did (dot, dot, dot) and they are fine!
- 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.
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.
I decided I needed a little break from the blog. Tonight, I decided to come back. Not much has changed since my last post. There have been ups, like Carter is now consistently swatting at objects, and downs, he lost a pound in two weeks. Now we have to increase calories, add olive oil and milk of magnesia to his bottles and he is now on a muscle relaxer called Baclofen.
He’s been in such a happy mood lately that it’s helped keep my spirits up.
In trying to look at the positive side of life, in addition to the swatting he is also making some great eye contact when eating, as well as laughing at our voices. These are all brand new, wonderful additions to my days.
We are still waiting on a few genetic tests to come back from the lab. It’s been over a month so I made sure to follow up with the pediatrician.
As far as therapy goes, we have increased. Early steps physical therapy and vision therapy once a week, as well as physical therapy and occupational therapy at a private firm once a week.
On a lighter note, Carter and I have been taking a baby massage class, as well, and I think our bond is stronger. It has helped his reflexes and his constipation. It’s also helped his anxiety and his attention span. I’m excited to incorporate massage into our daily life.
That’s all I got. It’s nice to be able to get the right words out again.
Reflecting on the last year is easy and hard at the same time. I know I spent the first three months in a twosome, but its really difficult to remember a life without my bubbie. He is, NO DOUBT, the best part about 2016. I unfortunately spent (and undoubtedly will continue to spend) an inordinate amount of my time worrying about Carter and his/our future, as we search for a diagnosis and continue to “treat” his symptoms.
My New Year’s resolution is to focus a little more on having fun with him. I know that worry will always be there, but I am ready to be Mom. Not therapist, not doctor. Just good ole’ mama.
This means in no way that I will be lenient on the therapy he is receiving at home or quality of his care. This just means, if I want to take him to the mall to ride on the carousel for a few hours instead of staying at home to “work”, that’s what we are going to do. Life has been difficult, to say the least, and I need to be a little bit more optimistic. No matter what the problems are, he is still my bubbie and I love him with every part of my soul. He is the biggest and best part of me.
Here is to 2017! It WILL be Bubbie’s year.
Waiting. I always feel like I’m waiting. Waiting on tomorrow, waiting on him to progress, waiting for a result. Always waiting.
I’ve spent the last three days dedicating all of my free time to little man. Trying with everything in me to focus only on today.
The results we have gotten back so far are all negative. Metabolic study, negative. Thyroid, negative. CPK, negative. Organ function, negative.
Waiting on one other blood test and the chromosome analysis, which the pediatrician said takes a while.
Little dude also had his swallow study yesterday. They didn’t see anything to be concerned about except that he doesn’t take a lot of food/milk in. I guess we will see what that means when I talk to the ped.
I will say, man is holding his head up so very well. Still a bit wobbly, but getting better. Head lag is also almost gone, which is exciting.
He is so beautiful and awesome and if nothing else, I appreciate so much more in my life than I did before he was mine.
Every little thing is amazing.