But if you never try you’ll never know, Just what you’re worth

The other day some friends and I played a game. We listed off songs that we could listen to for the rest of our lives. One song only, forever. I of course had trouble choosing and ended up picking three. Music has always been the mainstay of my life. One of my friends chose “Fix You” By Coldplay. I listened to all the songs chosen and this one resonated deeply with me.

As of late there has been a lot filtering around with Alexandr’s care that has been incredibly difficult, and I have found it so hard to muster the strength and tenacity in myself that I typically have. that strong will and push forward attitude I always seem to have has been so rocky. perhaps it has been because of some of my own personal struggles but whatever the reason my resolve is being tested by everything that is facing us at the current moment.

Alexandr entered this world under the most spectacular of circumstances, at thirty three weeks, and spent a month in the neonatal intensive care unit. Since then it’s been a non-stop roller coaster ride. In the last year we’ve spent a large amount of time in therapy four times a month. We have had progress, and we have had setbacks. Anytime we make headway I feel like we do an about face and it’s two steps in reverse.

While other parents can speak to their children who are about to turn three, I cannot. Instead we communicate mostly through hand holding and pulling. I have spent the last few weeks struggling with what therapies to choose for him, what will serve him best, how to get them for him, and how to move forward.

Progress.

That’s always the word of the day, how to make progress. How do I get through to our son?

I told my sister the other day, who understands exactly how I feel, that I feel as though it’s like being locked outside a house with your child inside, staring in a window from the cold. You cannot get in until they can figure out how to open the door.

Autism is a fickle thing, and though he may not have an official diagnosis yet, that’s the label that we’ve all put on it at this point, his therapists included, and it’s something that over time, I’ve had to come to terms with.

Fix you.

That’s exactly how I feel.

I wish I could fix it. I want to fix it. I want to make it all okay for him, and make the pain go away. I don’t want my son to be upset when he is around too many people, too much light, sound, or just general chaos. I want him to be able to go from place to place without being so upset he can barely breathe. I want to take all his pain and anxiety and bear it on my own shoulders. Give it to me, and make him okay.

Today is world prematurity day and I was reminded once again how precious he is. Despite all of this, and all of our struggles, I have taken the last few days to step away, away from all of it, the appointments and therapist evaluations. The upcoming school placement (he starts preschool in February). The developmental pediatrician evaluations and the figuring out what to do about this child psychologist business, and I stopped to enjoy my son.

Sometimes I get so caught up in all of the need of development. I forget to just slow down and enjoy him as he is now. I focus so much on what the next step is, that I forget to take in the now.

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 Sometimes we have to just let go of what we think we can do, to find out what we really can do, and be. We have to get out of our own way. I feel like I spend so much time at times TRYING to be the best parent that I can, that I miss just playing in the dirt with my son. I should let go more often.

In the past two days I’ve been able to take down the barriers in my house and stop using the baby gate, and bring him a little more into my world. He has his own space in our office at that little desk of his own. He is learning a little more about boundaries and I think he’s actually understanding it a little bit, because I’ve given him that opportunity. We both have been feeling sick as well and for the first time since he was seventeen months old he wanted to sleep in my bed with me, and I haven’t gotten those kinds of cuddles since he was that age either. I forgot what it was like to have him need me that close. I cried my eyes out after he fell asleep. Something he will probably never know or understand, but I needed that from him so badly.

I just needed to try, to let myself know what not only I was worth, but what he was capable of.

I think we both needed what came out of the last few days.

There is no fixing that needs to be done in this house I have always known that, and while I may always want to make him feel better because I’m his mother, and will always want to take that weight off his shoulders, I’m learning every day to handle things a little better. It is all a process, and we learn from each other.

 

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Give em land with a good view, to start a family

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Things in our country are tense right now. A lot has been going on the last few months and as someone who follows politics pretty closely, and who has been a pretty avid follower of it since I was in high school it’s all hit pretty close to home. I have seen a great deal of hate, sorrow, and ugliness in the days following the presidential election, and I feel the need to turn away from these things.

With some of the important holidays just around the corner I’ve felt it’s important to reflect on the things I’m thankful to have. Before I know it Alexandr will be three years old. His Birthday is in February, and I cannot believe he is growing so fast. His mind amazes me on a daily basis. My husband is my love light still and that flame burns with a ferocity that I’ve never known in life. I could look into his eyes for hours. Pretty sure he could do the same with me, though I cannot pass words from his lips in his absence, I think I could make a close appraisal of his level of affinity.

This year will find this house void of company come Thanksgiving. The sounds of my husbands voice and laughter will not be here. As a result, our footsteps shall not grace it’s floor either. Alexandr and I will do what most people do, and for once fit into a strange societal standard I’m not accustomed to meeting. We shall travel for the holiday. We will make new memories with my wonderful sister, and her beautiful children. We will forge fresh beginnings, and I’ll be invited into the warm and open arms of family. We’ll cook turkey, drink wine, and share our lives in a way we are not always able. I am grateful for the opportunity.

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Not all people are as blessed as I, nor do they lead as warm and loving a life as I do.

I face challenges, with my health, and my sons.

I do not lay my head down at night worrying about the roof over my head, or if there will be food to eat in my home anymore, I do not worry if we will be able to provide an ample Christmas to our child. The contrary, I wonder where we will put the new gifts he will be provided!

I realize now more than ever, that the love, and family that I have, albeit small compared to some, is so warm and strong, that I could wrap up in it like a thick blanket, and carry it with me. It would shield me from so much harm if I would let it. That is a true blessing, and for it I am incredibly thankful.

 

The thought of arriving, kind of feels like, dying I don’t want, to go home and be, alone…

  So I have been on hiatus for some time now for those who may have noticed. Enter my triumphant return. Ever changed by the experience.

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Both my chariot and husband awaited me. We rolled away with eighteen wheels and where the road normally took my love light from me for a time, and with it my heart along side him, this time I went along for the ride. For two whole weeks I left my normalcy behind. It was like being swept into a whirlwind. Before I knew it we were leaving everything I knew behind and even states that I knew behind. Then it was just me, him, the darkness and the headlights on the ebony asphalt in front of us. My feet up on the dashboard of his truck, we had all the time in the world, or what seemed that way in our minds.

When you only have four days a month in your marriage to drink each other in, those moments become precious. You treat each day you are with each other like minute to minute, you have to make it count. Having so much time was almost dizzying, for us both. At first I don’t think either of us knew what to do with each other. We have been together now for almost a year and a half, and our one year wedding anniversary is incredibly soon as Valentine’s day sneaks up on us. We know each other so well that we can be in different parts of the country, yet we can feel the dissonance in each other. Like some strange disturbance in the force we can simply detect when the other person is suffering silently.

This leads to so many phone calls randomly, be it in the middle of the afternoon, or at three in the morning.

“I needed to hear you” or “I felt like I should call” I’ve never felt so synced with someone in my life. Our souls dance across the distance, and I feel it, no matter how far apart we are.

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As the miles passed we talked. We connected with each other on a level we hadn’t always had time to. With the creeping stretch and wind of the roads and hills, the crawl of the pavement and the tick of the clock, every mile we drove we both learned a little more. Zane and I have been friends for so many years. Six to be more precise, but there’s so much that sometimes you just don’t say, and even as partners there is always room to learn more.

I shared stories from my childhood that he had never heard. He shared some with me. The miles passed. We made jokes, laughed, held hands between gear shifts up hills and around curves. I read books out loud. We sang together, loud and uninhibited in the wee hours of the morning. We talked of our aspirations for our life together, and for our son. I took in the landscape of eight beautiful states. Four of which I had never set foot in before in my life.

On top of this I gained something else. Perspective.

I gained a newfound respect for the man that I love.

I have always had the deepest and utmost admiration for Zane and what he does. The man sacrifices himself and his time to provide a life for his family. It kills him to be away. The look of pure anguish on his face when he has to leave is gut-wrenchingly brutal. I thought I knew how hard his job was. Until I watched him do it. He works so much harder than I could have ever imagined in my head or realized.

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The time I spent in that place he calls home when he cannot be with us, his family, at his real home, showed me what an amazing individual I am married to. I felt like I gave him enough credit an admiration before. He will get even more now, of that there is no doubt.

The hard part comes now. Now I am home, and I have had to let go of his hand once again. This time for eight weeks, so that I may have my light back in my life for Christmas. After getting such valuable time together I got comfortable. I keep reaching for his hand, and turning to see his face. Only to be reminded that he is not here, and sadly, I cannot see him. Thank goodness for technology.

What I wouldn’t give for his breath on my cheek, or his hand brushing back my hair.

His gruff voice telling me how much he loves me in my ear as he holds me tight.

Lying next to him as we fall into a deep sleep.

Dream of me tonight my love.

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