Day 3: Carter’s favorite book

This is a tough one. Carter doesn’t have the attention span or patience to read a book. That doesn’t mean we haven’t read books, we just don’t do it enough for him to have a favorite. 

I will say “Guess how much I love you”, is one we have read a few times. I cry every time. I love him to the moon and back. 

This is probably a pastime I need time pick up now that he is calming down a little. It’s difficult to read to a baby that doesn’t care to partake in the activity. The pages don’t interest him and neither do my words. 

Let me get a few in from his library and update once we determine how much he likes it. 

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Day 2: Ten things you might not know about me

This blog is lovingly dedicated to my son, but I’m stealing his thunder for one post. 

10. I’m borderline obsessed with anything Disney-related. I would quit my job today, if I could make a decent living being a Disney princess. They have already let me know I’m just too small, even for tinker bell, but who cares. Follow your dreams, right?

9. I hate socks. I hate the seams at the toes. The thought of my feet having the life sucked out of them by those monsters makes me cringe.

8. I get overwhelmed pretty easily. A restaurant menu will set me off. I don’t do well with a lot of options and the idea of making the wrong choice. I am also a perfectionist, or was, which makes a lot of tasks not doable. I’m an everything has its place kind of girl. 

7. I love the feeling of falling. I search for it. From roller coasters to bungee jumping. I even like going a little faster than I should over a bump in the road. Why? No idea. I like the adrenaline and feeling like I’m alive. 

6. I love horror movies. Not bloody, gory horror movies or exorcist/shining horror movies. Horror movies that could 100% happen. I love to be scared and ghosts are a serious passion of mine. But don’t even think of taking me to a fake haunted house. Hell. No.

5. I LOVE live music. Music in general is food to my soul, but there is something about the energy of a live show that I crave. 

4. I should have either been a marine biologist or in forensics. I find science completely fascinating. I’m not sure how I ended up in non-profit..

3. I look at my life and memories as before and after Carter’s birth. I am a different person now, in so many ways. I am constantly dreaming of my life before all the heartache, but I can’t imagine him not in my life.

2. Little Debbie cakes are my weakness. I’m generally a very healthy eater. I cook every night and we very rarely eat out. Put a little Debbie cake in front of me and will devour the box in 2 minutes.

1. I’m a loner. I’ve always been independent and ok on my own. I think that’s why our situation has affected me as it has. My selfishness still hasn’t worn off and there are dreams I want to accomplish.

And through it all I will. 

30 day blog challenge: The meaning behind my blog name

I started, or tried to start, a blog challenge a while back. Though the first post turned out well, for whatever reason I just didn’t continue. I want to try again and really force myself to complete it. I’m, by nature, a very organized multitasker who is insanely good at not completing projects. Today, I’m changing that.

Today. Day 1. What’s the meaning behind my blog name? 

I think it’s a pretty simple answer. I picked the blog name for a simple reason. I want to write about our life with my little guy. He is currently undiagnosed with multiple issues and there is this huge world of special needs that exists, I never knew about. 

Things like this didn’t happen to people like me and my husband. We have zero special needs members in our family and to be honest, we didn’t know anyone with special needs. I really believed there either weren’t that many people suffering, because I never saw them in public, or something extraordinarily tragic had to happen to cause it. 

Neither are true. 

I tend to bury my feelings. Or at least I used to. I started this blog to put my feelings on paper. I can say and feel however I want on these pages. This has been a very hard year and I don’t see it slowing down anytime soon, but I want to document the journey. If anyone can benefit from hearing that they simply are not alone, I did my job and I did it well. 

So, I didn’t think long and hard on my blog name. I didn’t come up with a fancy smancy pun or catchy title. I wanted something simple that others would be able to understand if they found my blog by happenstance. 

Hopefully, it has done its job. 

Thin places

For the past couple of days, every so often, I can catch Carter’s attention. He actually looks into my eyes. It’s only happened a handful of times, but it’s happening more frequently, even to the point that he turns his head and looks at me when I talk. I feel a soul connection with him when he does this. It’s not a feeling you can describe. It’s not of this earth. 

I recently read a blog post where a woman commented that these moments are the thin places. It’s the veil between us and a higher power, thinner than it usually is. 

I think that is beautiful and I think it describes exactly what I’ve been feeling. I’ve always wondered if he knows me, my smell, my voice. In these moments, I just know. I don’t question it. 

I wish it happened more and I pray he doesn’t regress. I live for these moments. 

Frozen in time with my man. Just as it should be. 

Think positive, be positive

Train your mind to see the good in every situation. Wake up, act happy. Go to work, act happy. Come home, act happy. Eventually I will really be happy, right? I think that’s how it’s supposed to work. 

This week has been a little difficult on me. To whoever decided to talk behind my back, that’s fine. I’m ok. Just remember to be perfect the rest of your life. You aren’t a friend. Spreading something I said in a passing moment and personally to you just shows what kind of person you are. Especially when you know what I’m going through. But that’s fine. It affected me for a second, and I’m moving on. I don’t need that negativity in my life. 

No one will truly understand the grief and array of emotions you feel every single day, until you live what I’m living. And I wouldn’t wish it on anyone. But damn, it would make it so much easier to explain. I have outbursts and deep set anger and it’s uncontrollable. I’m in therapy and I hope I get the tools I need to cope better. I need to be better at home, at work and just in general. 

We still haven’t received the test results yet for Carter’s micro array. It’s been a month now…

He hasn’t progressed much in the last month. He actually lost weight so we are having to give him supplements instead of resorting to a feeding tube which is last on our list. Crossing my fingers it doesn’t go that far. 

We have him in a little walker and he bounces a few times a day. It’s strengthening his legs so he is wanting to stand more often. I will say he is sitting in his bumbo better than he used to and eating more. 

We are keeping on! Keeping our heads up! Smiling! 

In the inspiring words of Mr. T Roosevelt: Just believe you can, and you’re halfway there!

I try to rest, but sleep won’t come 

I’m patiently awaiting Carter’s chromosome test results, and my first counseling appointment. Neither can get here soon enough. 

I’m tired tonight. Body tired. My mind is running freely even though I’ve tried to quiet it down. 

All the “what-ifs” that I can easily throw on the back burner during the day, dance back out into the open space of my mind. The open space I’ve been trying to quiet. 

Social media makes it worse. Friends having babies make it worse. Friends with kids make it worse. Kids make it worse. I’ve tried my best to act happy, be happy, but I’m at home in my bed. Alone. The one place I don’t have to pretend. I can let tears flow and let my heart ache. 

It aches for so very much. It aches to know a future, a meaningful future, with my son. I feel like a failure. I feel like I let Carter down. He’s not ok, and I can’t figure out what went wrong or how to help him. 

I feel like I let Casey down. This may very well be his only child and he prayed for a son. A son to play ball with. A son to hunt and fish with. What if Carter can do none of those things? Will Casey be satisfied if he can’t? 

I also feel like I let my family down. Carter is the only grandchild they have close to them, they also wanted a little boy. He isn’t learning and growing like he should be and I feel terrible that my parents don’t get the satisfaction of a child that engages or returns their love. 

What if he never engages? If all the therapy is essentially doing nothing? What if he never knows me or how much I love him? What if. So many what ifs. 

Tonight is hard. I’m sure I’ll bounce back and this will happen again and again. 

I just want to sleep. 

Now we wait! 

How long, I’m not sure. Im so proud of my dude. His blood draw was simple and easy and he did so well. Not to say he was calm by any means. Nevertheless, he did beautifully. 

The chromosome array will probably take weeks or months to come back. But it’s done. The blood is out and gone. I’m happy to be in this moment. 

He is growing…slowly. Still following his own curve. His head is, and always has been, on the chart and growing. Something the pediatrician is very happy to see. It means his brain is growing at the right rate. Small dude, big brains!

We have started to brush his two very small, not even grown in teeth. He likes it, so I like it. He has also increased his food intake with no more gagging, which is great. 

His check up noted how very floppy he is in his trunk, but his hips and legs are perfect tone. So though he cannot sit up or reach to hold anything, he will stand forever. 

That’s where we are today! Hopefully we will have some updates soon regarding his testing. Prayers all will be well are always welcomed. 

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. 

Moving along…

It’s been 10 days since the genetics team recommended the chromosome micro array. 10 days of frustration. Waiting on insurance to see what or if they can even help cover the cost, that cost being over $1500. 

It’s like pulling teeth trying to get any sort of assistance. Everything related to special needs is entirely too expensive. 

In addition, my man now has two teeth and is growing like a weed. Which means TANTRUMS. His new favorite move is slamming his legs down on whatever service he is laying on. And if he kicks you, more points to him. 

He’s been working hard in therapy and achieving a few goals. Nothing spectacular, but every inch stone he reaches is very exciting. He finally reaches the ground (kind of) in his little walker, so he’s learning to propel himself forward. That’s always fun to watch. 

We will be going to Texas soon to visit his Aunt and her family. I know he will be super excited to travel 🙂

Not too much of an update tonight, but thinking of everyone who supports us and reads my blog. 

Thank you. 

Repeat after me: Chromosome Microarray

So, my dude has a new blood test that is being ordered. This one, which I thought we already had, will be looking at a chromosome deletion or addition. 

Our geneticist believes that with the case of his constant vomiting, that means every few minutes during day and night since birth, his problems lie within the metabolic disorders. I looked that up. 

One positive note is he has been tested and ruled out of hundreds of disorders. I’m also a realist so the negative part to that is there are still hundreds he might have. 

I’m crossing my fingers we get an answer with the microarray. We have a plan if we don’t, but I don’t want to put him through more tests. If this is negative, we will try whole exome sequencing. This test is the most up to date test that can be run to look at your genes or DNA. This test is also around $6,000. 

I don’t want to have to fight for it. Don’t doubt me, I will, I just don’t want to. 

Pray we get an answer to this test.