Trying to let the light in

The last few weeks have been difficult for me. It’s hard to have an identity anymore when your life is engulfed with needs as high as Carters. 

I fell back in the damn hole and I’m digging myself out again. Or trying to. Having to constantly fight for things my son needs is exhausting and really unfair. I never realized it wouldn’t be as easy as saying, hey, my sons throat burns like hell when he burps. So much so that he screams and chokes. And this happens every single day, multiple times a day. Can we get some shit to help him? 

If you are wondering the answer is no. It’s always no. So I fight. And appeal. And fight more. Until finally something is approved. Then they tell me my copay is 70 bucks. 😂 Our healthcare system is junk. Junky junk junk. 

Anywho, tomorrow is Carter’s Chromosome Array. Crappy Humana finally approved it, but as stated in their letter, that doesn’t mean they cover any of the cost.

I’m scared and excited. Like usual. I want an answer. I need one. I feel like my life depends on it. None of this makes sense to me, so an answer of any kind will help. 

Carter’s delay is growing larger. He doesn’t really pick up any new skills so it’s hard to teach him anything. Honestly, it’s like we don’t exist much of the time. He doesn’t look at you when you speak, so the teaching is few and far between. We keep trying, though. 

We also recently saw a chiropractor to help with reflux. We have been twice, but no improvements. He recommended us to see an osteopath, so that is scheduled for June. I don’t have faith in much, so if it works then great. If it doesn’t, well at least we tried. I’m not pessimistic, just a realist. I got hyped up real bad in the beginning and nothing worked, so I keep my expectations severely low. 

I am scheduled to see a counselor soon to help me deal with Carter’s issues. I thought I could handle it all on my own, sprinkled with some anxiety meds, but it’s not cutting it. My thoughts are dark and they are deep and I need to be healthy for my husband and my son. 

Our amazing weekend 

Saturday was Carter’s first birthday party. It was everything I wanted it to be. It was everything I needed it to be. 

Carter was amazing, as always, and had such a fun time. He enjoyed being passed around and loved on. He enjoyed smashing his cake. He was so happy. 

And it made me so happy.

One of our most favorite gifts was an otteroo float from my parents. It gives Carter the chance to kick and work his muscles in the water when normally he doesn’t have the ability. We now are using it to bathe and is having a blast during bath time now. 

Not too much has changed lately physically. Still working on full head control and sitting. His tracking while sitting up is getting better and his glasses should be in this week. I’m so excited for him. 

We are starting to let him taste more foods and try juices. He aspirates on water, so we are trying something with taste like pedialyte. I hope he likes it. 

We are also getting real close to our genetics appointment. May 4. I’m terrified. I should be ready, but I’m not. I’m scared. I know it is what it is, but this is my son. My life. I need him. Always. I pray every night that all will be well. 

That we will get through this. That he will be okay. If you can, take a moment and pray with me. All of your prayers have gotten us to where we are now. The more we have, the better our outcome. 

“Life is a series of a thousand tiny miracles. Notice them.”

Happy first birthday to my main man!

At 1 year old, Carter is actually 11 months. He is 18 lbs and a little over 2 feet tall. He has a gummy grin, beautiful blond curls and the prettiest green eyes this side of the Mississippi. 
Carter can: roll on his left and right side from tummy to back OR back to tummy, prop sit for a few seconds assisted, hold his head up for longer periods, reach for us and toys, starting to grab toys intentionally, let you know what he wants or doesn’t want, scoot around on his stomach and stand for long periods of time assisted. 

Likes: swinging, prunes, Sam kisses, lights, anything involving outside, bathtime, eating his hands and standing on his feet for days on end. Oh yea, and Florence and the Machine. 

Dislikes: vegetables and meat, massages, lullabies, car seat and anytime you think you want to put him down. Just don’t.

Carter, my love. I hoped and wished and prayed for you for a very long time. I am so thankful that I get to be your mama and that God entrusted you to me. Some days, I feel like I don’t deserve you. 

You make my world spin. 

I hope you have the best birthday, today. I am so excited that I get to make you happy for the rest of forever. 

I love you. I can’t say it loud enough. 

She believed she could, so she did

I wanted to sit down and really reflect on this past week. It has been extremely quick, but extremely eye-opening. 

I feel a change in my soul.

It’s been a struggle to rein in my depression and anxiety surrounding my baby’s issues. I’ve been trying to find a balance with my medication, something that actually works with my body. I think I’ve almost nailed that.

My biggest issue has been seeing Carter for Carter, instead of his delays. I mean, I still do it and it will always be there, but I send myself into a deadly spiral of negative thoughts when I try and picture our future. THAT needs to stop. 

I’ve recently stumbled across a blog that has changed my world. A blog that I believe will help me progress into the strong mother I know I can be for my dude. It’s called “Special Books by Special Kids.”

CEO Chris Ulmer travels the world meeting children with different diagnoses. He learns what they like and communicates with them. He shows them all acceptance and love. The videos are life-changing. If you watch one, you will watch them all. 

The best thing about these interactions is that they have shown me something I’ve been missing for a year. Real communication with Carter. Chris has shown me that Carter has been trying to communicate for a while and because I assumed he would communicate typically, I missed it! I see it now. I see and understand his communication. 

I feel so unbelievably close to him now. The bond I thought we had has nothing on this. It’s incredible. 

If you haven’t seen these videos, look them up. You won’t be disappointed. 

Life is tough my darling, but so are you 

I’ll give it to man, he may be super delayed, but the child loves him a crowd. Today he attended his first of many crawfish boils at his granddaddy’s house. 

We hung out in the grass and put our feet in the pool. Dude loved it. 

I think the number one thing I need to start working on is my reaction to people’s comments. We are starting to bring him out more and when people see we have a baby, they automatically want to interact. And he doesn’t. He won’t even look your way when you talk to him. We know that and we understand that. Others, not so much. 

I can’t tell you how many times I get comments about his eyes. It makes me sad because I love him so much and I think he’s beautiful. It hurts that others might not feel the same about something that isn’t his fault. 

People are also surprised when I say he will be 12 months old in 2 weeks. He just started fitting in 6 month clothes. So with his size and delay, people assume he’s around 3 months old. Which is FINE, but they always get a pitied look on their face. I hate that look. 

I tend to just smile because I have no idea what to say back. He’s delayed? He can’t see well? He has a condition and we don’t know yet what that condition is? Ack. 

This is difficult and unknown territory. I’m working on it though. I can do this. WE can do this.

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.