I hear voices all the time…

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What is it that defines us? Who we are and the choices we make? We all have paths in life. Roads we travel down, sometimes dirty, rocky, or even muddy. Other times we are met with smooth pavement under the tires. I feel we all are presented with obstacles and detours and how we decide to handle that is part of what it is that writes the ultimate biography of us. Who we are and the nuances of our personality.

I like to think that I am a strong person, one who has not only been off-road, but lost with a broken axel and busted mud tires more times than I would ever want to admit, even to myself. Every time I have found my way back to life. I mend the frame and drive on. Much like an old beat up Dodge that has seen better days but still runs and drives, I am here. Despite the fact that this old diesel engine is a bit knocky and tired.

I know I know, that is a lot of parallels to roads and trucks, but this is me we are talking about.

Lately I have had the voices of those around me, those who are so important, in my head. I have had a lot of things on my mind as well as many challenges to face. It has brought to the forefront some people around me who I don’t think will ever change. It has also reminded me that I do have the support of a few people that I could never trade. My wonderful husband, my amazing sister and brother-in-law, and even, at times, my grandparents down south. Though my phone calls to them are often short, and somewhat cooky, I will always be thankful for my grandmother and her silly southern love. I will never forget how much love I have been given from them over the years. My sister is a driving force in my world, I am ever thankful for technology and the ability to keep up with her every day when we cannot see each other.

I may not be perfect, and I have certainly been through a lot. I have become so much more aware of the truth in the world, and about people.

So what is it that makes us who we are? Is it those around us? The things we see? The way we were raised? I believe it is in the choices we make every day. You are who you choose to be. If you want to get back on the pavement, you need only turn the wheel, and start getting out of the mud.

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All my friends are heathens, take it slow…

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I’m not exactly anyone’s idea of a “lady”. I’m not going to say I every really tried to be. I was always the one who avoided the color pink like the plague as a child and swore off dresses. I was climbing trees with and riding bikes with the boys.

I had a conversation with an old friend, Richelle today. It was a short catch up and chit chat about random things in which purses and shoes came up. Little known fact, I have become an incredibly large shoe addict. I am going to confess it outright I have fallen into this guilty catagory now. I have more shoes than I have room for or occasions in which to wear them to. When we buy our home, which we are shooting for hopefully next year, we are going to honestly have to plan for a larger closet to accommodate my clothes and shoes now lol.  I also have a hard time passing up a good deal on a new pair even though I have so many lol. I’ve also noticed that I’ve taken up more girly hobbies as of late. I certainly use makeup more often, I regularly carry an ACTUAL purse instead of one of those crossbody bags that barely passes for one, and find myself shopping for multiple ones as a guilty pleasure. I wear skirts and dresses and love it. I enjoy accesories and have an extensive collection of girly things. I mentioned that I even have a pair of tennis shoes that are primarily pink now. She flattered me by saying that I was most certainly girly, if not adorable in our younger years anyway.

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As you can see my style was quite that of I LIVE IN JEANS AND TANK TOPS, throw in a hoodie for good measure and a t-shirt here and there with a band on it and you had my style lol. The other picture is from today. I’d like to say I’ve grown up, and changed, while I still wear t-shirts of course I’m not exactly what I was back then. I am pretty sure my face is stuck in some time warp, because I still look like a baby LOL. I’ll take it for as long as my body decides to let me keep it. I may be falling apart on the inside but I still look eighteen sooo, eat that chronic illnesses! ❤

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This did get me to thinking about something else, as today marked a very important day, as did yesterday, in my personal history, as well as our national history.

How often do we realize what we mean to others? I spent so much time of my life worrying about others accepting me, saying the right thing, doing the right thing. I was always so incredibly insecure and awkward. Afraid of losing those around me. So very few of the people around me even knew that but I was so afraid of them turning on me or their friendships with me being conditional that I was fearful of getting truly close to anyone, and in some cases I still am. I stopped to ponder today if some of those around me back then ever felt the same. Maybe I was one of those people to them? Maybe I was the one they looked up to? Maybe, just maybe I was one in their life whose opinion really mattered to them.

I feel like a lot of us let our insecurities hold us back, from wearing what we want, talking to those around us, or letting in people. You never know. You could be someone’s inspiration, or foundation. That friend you are so scared to lose because you are afraid of their opinion, simply because you think so highly of them? You may be that person to them. Never underestimate what you mean to someone. Live life with as little fear as possible. Go out and reach for the things you want. I am thankful for my husband Zane because I spent a large portion of my life surrounded by people who told me I couldn’t or shouldn’t do things because I was “too short” or “not quite in shape enough” or “couldn’t pull it off” and I let it hold me back from things that were really part of me anyway.

For the first time in my life I am starting to experience it unbridled. I try very hard to keep my fear of rejection or judgement in check, and do what I feel happy doing, so long as I am not hurting anyone else in the process, or myself. Honestly? We only get one spin on this Earth, and mine may very well be a short one. I want to show my son Alexandr he shouldn’t be afraid to be himself, and I never want to regret the things I didn’t try or do, the people I didn’t let in, or that I wasn’t there for.

Also, have a song, because it’s stuck in my friggin’ head.

This brokenness inside me might start healing…

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Today I am going to go back to my health for a moment. As always the rollercoaster continues.

Despite my history suggesting rheumatic disorders multiple times, when I was tested it did not show that when I finally made it to a rheumatologist. Given that I was being treated with prednisone this is likely the reason why so I have to wait and get retested. However, I did get slapped with a new issue. I was diagnosed with Fibromyalgia, and started a new medication called Lyrica.

Second to this…I have become increasingly worried about my kidneys. I see my nephrologist very soon which I am glad for, he had me do a new 24 hour urine collection since I have hematuria and proteinuria (for those who aren’t aware that is protein and blood in your urine, both bad things.) My blood pressure has also been spiking and my vitamin D has been incredibly low.

I barely got 30 ounces out in 24 hours.

This alongside the fact that my filtration rate in March had dropped to 72 scares me. I am nervous as to what I will find when I go to my appointment. My rheumatology clinic has also requested I push my nephrologist to do a biopsy. Something he really does not want to do since my condition is so unstable and my illnesses so largely unknown at the current moment.

It seems that no matter which way I turn my life is short. Too short, and painful. Some days are easier than others, some days I find myself fighting my own body to move.

I am twenty nine years old and I own a cane and a wheelchair. I have a handicapped tag for my car. These are not things I am proud of. I hate them infact. I cannot remember what it is like to be free of pain anymore. What makes me sad? I will probably never know what it is like to feel as though I am not a burden on my husband or family.

No matter how much they say it, and want me to feel I am not. I still feel I am, and probably always will.

But what makes me saddest of all? I will not have as much time as I want with my family, my husband, my son.

I am a ticking clock. I know this, and I am powerless to stop it.

I will spend the rest of my life knowing that I cannot get any of the precious seconds back that I have wasted on this or that. Standing in the line at the checkout, driving from place to place, the mundane details, or even all the time I have had to wait to find out what really is wrong over all. The whole time my kidneys get a little weaker, my body fails a little more. More damage that cannot be repaired.

My time here is so incredibly precious. I am ever mindful of this fact.

I bleed, I pine, I burn for things that I cannot ever have, better health, a body that works properly, the ability to have another child, better still, the ability to be a healthy mother for the child I have, and my wonderful husband.

Hold on to this life, it truly is the only one we get. I spend my every day trying to remind myself that I am writing my story and painting my world, and one day I’ll be gone, and it so important that I relish the moments I have, and drink them in like a tonic. Breathe it like it could give me the time I crave so desperately.

If love could extend your life, the love of my family would keep me alive for hundreds of years.

I have added more vocal covers to my youtube channel and here is one of my more recent ones.

 

Cause he’s stronger than you know…

Where to start today.

When you’re the mom of a kid with special needs you work in steps. Sections. Small plans. You can’t ever look too far ahead because then everything gets too chaotic, too fragmented, and just too hard to handle. So you work in compartments. In our case it started with Alexandr’s first set of therapy last year. It was a six month compartment, and we set goals. There are always goals, things you hope to reach and see. Little milestones. Small victories. You hope for the best and you try to tune out the children around you, parents too. Not because you’re trying to be mean. You have to, for me when I take in those around me, it’s too much of a reminder of how far we have to climb, and an ever painful truth that we may never get there.

It’s a constant face to the forefront that my beautiful little bear, may never meet the world’s standard of “normal”. I have mourned so much from pregnancy to now, that it has been hard to handle the roller coaster of emotion that comes along with this. When the time came for me to go into the hospital at 30 weeks for the first time, I thought maybe, just maybe, it would all be okay somehow and it was all just a dream. I’d get out and go back to “normal”. Normal. You hear that word so damn often and I hate that word. I wish I could throw it out. What is normal anyway?

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I had no idea when I took this picture, alone in my hospital room, that a few short weeks later I would be sitting in an operating room holding the hand of a man named Darrell, my kindly anesthesiologist as he assured me it would all be okay. They were telling me my son wasn’t getting oxygen, and that something was wrong. Dr. Adams, the man who would deliver my son, told me not to worry if I didn’t hear him cry. He probably wouldn’t cry, as they delivered my spinal block and did their best to make sure I was numb prepping me for my c-section as Daniel waited outside.

A short while later Alexandr made his entry into this world and nothing about it has been “Normal” since then. I spent time recovering from my c-section brushing up on infant CPR and learning how to clear his airway in an emergency. Sadly I had to use that once. No one should ever have to see their child turn blue on them. I have.

Alexandr has spent his life fighting but he is here and was released after just under a month in the hospital. When he was almost two years old and could only speak a handful of words, spent more time being entertained by the ceiling fan than his toys, and took no comfort in my embrace. I began to worry. Six months ago right around his second birthday Alexandr was officially pronounced to be delayed by about a year. We truly had an issue. I felt like I had failed him once again. As much as I struggled and felt like I failed standing in that hospital room, standing in my living room after his therapy team left, I felt even more so. That’s when I began to hate the word “normal”.

Alexandr now has glasses as well as Nystagmus which is an uncommon issue where his eyes bounce back and forth, which, he isn’t aware of and cannot control, but can be seen by anyone who looks at it from an outside perspective. Another difficult blow, another thing that cannot be fixed.

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After six months of the knock down fight of therapy, Alex has seen good days and bad. We have seen progress but not forward motion. Recently we had a blow to our guts. His therapist came to me and finally said the words that I knew were likely coming but that every parent in my position is so afraid of.

She told me that we should have him screened for Autism Spectrum Disorder. They fully believe him to be on the mid to high functioning end, but ASD none the less.

Compartments, sections, little victories. We struggle every day and we spend our time looking at the smaller parts of our world because we cannot look outside, we cannot compare or big picture.

I took a step back from all of this.

I spent so long blaming myself for all of this and feeling like such a failure for not being able to give him everything, and allow him to have a life free of struggles. I felt as though I had to have done something, anything, to cause this. I know that I am wrong, and nothing I could have done would have made any of this better. I also know that “normal” does not matter. Alexandr is extraordinary.

Alexandr does things in a very special way. Alex sees the world in a way I will never ever see it. I am lucky to be around him. When I finally stopped trying to reach “normal” I found him. I found the beauty in my son just as he is. He shows me every day that he is there, in there, he may not show me in the way that everyone else’s son does, he does in his own way. Alex’s way. Alexandr is a superhero all his own. He hit a small breakthrough recently, and we have seen more progress, he has even found a unique way of communicating.

To other parents, I want to relate to you. I want to relate to parents who have children that carry on conversations with their three year old. My son does not even answer to his name yet. Please never misunderstand me, I cheer for your children, but I do not understand what that is like yet. I wanted to shout from the rooftops because my son who is almost three decided to use a fork for a few bites of his food.

My son still only knows about fifteen words, he often melts down at stores because of the noise, lights, and people, and my daily stories are not the easiest to tell. I spend my days, weeks, and months in small victories, baby steps, and compartments. Please don’t ever misunderstand us, we have to work in these ways to survive. Our time is filled with individual education plans, occupational therapy and speech therapy, and which toys should we buy for the engagement bin. How can we improve our sensory corner? Parenting for me is so very different.

I had a woman stop me during a time where Alex was completely overwhelmed by the grocery store, at the end of a very long trip, he was screeching at the checkout. She leaned over to me and told me I needed to learn to discipline my child.

Our world is different from yours, please please understand we are doing our best, and our world is just not the same as yours. I know at least for Alex, Zane and I, we do everything we can do get through this all together, the best we know how.

We try our best to find joy in our lives, we celebrate Alexandr for exactly who he is.

Besides, what is so great about “normal” anyway? This life is dizzy, it’s hard, and everyone, even people who have children that aren’t special needs may not have it easy, so we celebrate him. He is our superhero, and will always be.

We love you Alexandr, and no matter what, one compartment at a time, we will get through this.

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