Small victories

I noticed I’ve been posting a ton of medical updates and not enough about my beautiful boy’s inchstones.

His physical therapist asked us to ramp up his arm massage to twice a day to hopefully help him gain awareness of those muscles. Now, while on his stomach, he will reach with his right hand. Not usually for anything in particular, but reaching is reaching! We also do arm massage to Florence and the Machine. A connection between each other on a whole different level. 

He has also decided this week that he would laugh and giggle at more of his toys AND the sound of our voices. It was a delight. The neurologist mentioned she liked his babbling, so now I know it’s more than just making noise. 

I think he is also starting to understand things like “bite” when he eats his solids and “grab it with your hands” to his bottle or toys. That’s pretty exciting. 

I think my goal now will be to make myself deal with his fussy temperament and leave him on the floor to move. If I have to wear earphones, that’s what I have to do. 

Because the king is loud, obnoxious and absolutely beautiful. And he’s all mine. 

Houston…where do I begin?

Your traffic is horrendous. Your healthcare is phenomenal.

What I am leaving here with:

1. I can understand why people drive out of their way to come to Houston for medical care. Both campuses of the Children’s Hospital are locations out of a dream. Louisiana needs to take a hint and push politics out of the way so WE can have something like this. I digress…

2. Genetics is our best bet. Both doctors, the ophthalmologist and the neurologist, agree that genetics is our next stop. I’m happy I’ve already made that step and we shall be on our way in May. 

3. I love my friends and family. This is not the type of experience I wanted to be included in my life. But through it, I’ve been given love and support from every corner. I don’t think anyone will understand how huge of a hole they have filled in my heart. Thank you from the bottom of my soul. 

The neurologist calmed some fears today for me, which I’m thankful for, as well. She told me I can mark off a lot of Carter’s tendencies as Carter being himself. That’s quite a few. 

She also said we have done a great job pushing for answers, as she normally doesn’t come across a workup like Carter has. I think Casey needed to hear that. 

All in all, I will happily drive 5 hours and stay a night in Houston to see her again. She is humble and smart and someone we could use in our life. 

Now it’s storming and we are trying to make it back home. 

Thanks, Houston. 

Ophthalmology update

Today was not the day I was wishing for, but we will make the best of it! We are getting a cute pair of glasses for my dude to hopefully correct his strabismus. He only started crossing in December, so the doctor thinks he shouldn’t be in them for long.

He is also a tiny bit farsighted so we can adjust the lens to help with that as well. 

That’s the good part. 

The ugly part that I didn’t want was her push for genetics. She explained how, although his MRI is clear, that doesn’t mean there isn’t damage. 

She mentioned mitochondrial disease and storage diseases and all kinds of nasty stuff I didn’t want to hear. 

I know all these things, but I HATE when doctors point them out.

With his delays, she wants us to see a neuro-genetics doctor on top of the already scheduled geneticist appointment. 

In September. So this year is shot. Tomorrow is a developmental ped, then I have to hold my breath until May for the geneticist, THEN hold it again until September. And these are early dates! We are getting in early! 

I don’t know how these doctors think I’m going to just move ahead with life. I don’t know how that’s possible. 

At least man got to see the Houston zoo. Or didn’t see since he was super dilated. We had a good time though. Something to take the edge off. 

Oh, and this free glass of wine. Mama needs a break. 

So it begins…or continues? Who knows.

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. 

Secret survival strategies

Every day at the Williams’ casa is a surprise. You never know how little’s schedule will work or what mood he will be in or how much sleep he will let us have.

Some days, it’s obviously a struggle. Some are pretty damn delightful. On those days where I feel like the world is going to end, I pull out some survival tactics. 

Cleaning. I know, that doesn’t sound fun to you guys. But to me, my need for control is satisfied. With Carter, I have no control. He is making his own path and we are helping him along. Sometimes that sends my body into a state of confusion. In order to regulate, I clean. 

Dessert. Normally, I’m not a huge sweets person. Carter has changed me. Once man is askeep, I dig deep into whatever delectable dessert is in our fridge, freezer or pantry. Life’s short, eat the cookie. 

Closet space. Or the little nook in the corner of my closet where I find relief. Sometimes, I need a break. A short break to breathe, scream into a pillow and just collect my thoughts. Carter needs me to help him be the best he can be. It’s overwhelming at times. I need to channel my sadness and anger in more productive ways. I break, collect and move on. 

Dance. We like music in our house. Carter is a verified Eagles and Pink Floyd fan. My man. I promise, if you are ever feeling down or done, dance. Smile. Sing. Your heart will lighten. And sugar bear might even laugh. Worth it. 

It’s all worth it. Struggle or no struggle. He’s my sugar bear. So sweet he makes my teeth hurt. 

The anticipation is KILLING me

We are ONE week out from some very important appointments. Neuro ophthalmology in Houston on March 28 and Developmental pediatrician in Katy on March 29.

I’m both excited and scared. I have extremely mixed feelings. What if I get an answer? Or what if I don’t? 

Then to top it off, we have the geneticist on May 4 that is going to leave that ball of anxiety in my throat until it’s here and done. It’s funny how days fly by until you are anticipating an important event.

I think I’ve thought it through. Maybe not. Half of me says I’ll handle an answer well. The other half, not so much. Half of me says that I won’t feel guilt or blame if I did this to him, unintentionally. Half of me has no clue if I’m strong enough to handle that. 

I feel like I’ll always feel a sense of guilt and blame. I might be able to one day break free of the sorrow, but probably not the guilt. 

But you know what they say… oh look, Guilt: the gift that keeps on giving. 

And what a good day it was

Man was so sweet this weekend and we got so much done around the house! We now have an awesome deck built by my awesome husband. 

And little dude has been getting so strong. We have graduated from feeding him in his newborn pillow, to his bumbo or high chair. He’s floppy and can’t sit up straight yet, it sure ain’t pretty, but I’m so freaking proud of him and how hard he works. 

He’s also been talking so much lately. Making the B sound all the time and playing with pitch. It’s like we can have a conversation with him and lord knows, he’s the only one I want to talk to. 

In addition to all that coolness, we have worn out our 3 month clothes and are now in 6 month onesies/pants and 9 month footies. 

My sweet, growing, chunky man. He’s the BEST there is. 

Life goes on and on and on

I’m excited to say I’ve connected with an old friend who, by chance, has traveled this same journey. Not only am I getting first hand knowledge of what to expect and getting to know her feelings now that her son is 8, but this is someone I am close to. It’s an all in one blessing. We met for lunch and talked for a few hours and it was nice. 

On top of that, Carter’s pediatrician reached out to an old patient of hers who is also traveling this journey and we have been in contact, as well. 

I’m not alone. There are others who have been through or are going through this. And I’m getting to know their stories. They are inspirational and they are important. 

Things are settling again, for the most part. It’s like there is a light at the end of the tunnel and in a second it becomes dark again. And that happens daily in my struggling mind. I need these positive stories to keep me afloat. This has permanently changed me. I don’t think I’ll ever be who I was because now I’m someone new. 

And I have people. People who are there for me. 

“The most memorable people in life will be the people who loved you even when you weren’t loveable.”

Motherhood

I saw this on the newsfeed of a Facebook friend and I haven’t been able to relate to anything as easily as this. 

“But if motherhood has taught me one thing, it’s that I need so much grace. I need people to forgive me. I need people to excuse some of the areas I fall short. I need people to love me when I’m hardly making an effort to love them.”

I think that pretty much sums up my life at the moment. By God’s grace, I will be better!

Four things I have learned on this journey

It’s difficult to compile the list of things I have learned in these short 10 months. As much as I want to say this journey started after Carter had been with us for a while, that’s just not true. I knew from birth, even just gut instinct. I always knew. I think others did too, but they tried their best to calm my fears until they just couldn’t anymore and for that I am thankful. If I had to sum up a few things I wish I knew now, they would look a little like the below.

1. Enjoy your child. I missed out on a lot of Carter being a baby just because I was so worried about what the future held. He used to want to sleep with me, now he hates it! I want that back. I miss us both trying to breastfeed, and failing miserably, but he wanted to be there and so did I. I wish I would have enjoyed our time in spite of his development. In the end, his development is not who he is. He is my child, ALL of him.
2. People are there for you and they want to hear about your life, and Carter’s life. I bottle up a lot of what I am feeling. Why? Habit. This bottled up kid turned into a bottled up half-adult. It gets me into trouble, and though I know it, I do it anyway. Its hard to just open up all of a sudden. But when I do, weights are lifted and I wish I would have done it sooner. As much as you think no one wants to be there and listen, they do. They all do. Let them in. Let them listen. Let them cry with you and celebrate with you and love you.
3. Doctors are just normal ass people. Just like me and just like you. They do not know everything and they don’t try to know everything. The medical industry relies on process of elimination. As advanced as the industry is, its not as advanced as you think. Not in the area of genetics and disability, FOR SURE. Carter depends on me to be his advocate. You cannot rely on your doctor to do that for you. They deal with so many cases, you are not their number one and thats ok. Just know it all depends on you and your advocacy.
4. Don’t overanalyze every single thing your baby does. At this stage, I point out crap that normal babies do, that might be a “symptom” of something. Everything is a symptom. Let him stick his tongue out and flap his arms. Is he happy? Then let him be. <– this I still struggle with.

Thats my four for today. I will probably have four new ones tomorrow, and four more the next day. As is life. I’ll continue to embrace our designer genes and the medical mess that is my man.