Day 4: My proudest moment 

You would think with Carter’s snail like progress that there wouldn’t be much to be proud of or that this would be an easy question to answer because not much happens for us. Not true.

I’m having a very hard time choosing one moment. I am proud of every single thing Carter does. From making eye contact with me to his hand making it close enough to the bottle to touch it to putting himself to sleep without help. I live in amazement of my son, at every little thing he does because I know what it took him to do it. 

One might also believe that the proudest moment to pick would be something incredible, like sitting alone for a lengthy amount of time. Or reaching for an object. 

No. If I had to choose my proudest moment it would be splashing in the bathtub. It’s the only time I have ever been able to help him associate a word with an action. He splashes, he laughs, he understands. I enjoy bathing with him and I look forward to our minute or two where we splash. 

I am just as proud now, as we splashed tonight, as I was the very first time. 

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. 

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!