​I have been disappointed with myself over my lack of enthusiasm over my son’s post op progress from his neurosurgery. For the first time in a very long time, he is seizure free and yet I have been feeling rather numb about it. I feel especially shameful of myself when I talk to others about it in person. We convey how happy we are but I know the enthusiasm behind the statement is rather flat. The only deviation from this was our praise on one Sunday morning after we returned from Texas. We did want to give God the glory for the progress but yet there is still something inside me that felt empty…..
I know this all sounds rather sad to say considering the outcome of his surgery. My husband and I should be singing from the rooftops, and we want to, but we have gotten used to waiting for the other shoe to drop and have rarely been disappointed. 
My husband used to give me a hard time about my pessimistic attitude. I’d tell him that I couldn’t fully enjoy our early relationship because I was waiting for that other pesky shoe. I honestly never felt like I deserved my husband, but rahter I deserved unhappiness. I was divorced, opinionated, and I knew what I wanted out of life after I felt like I had been given a second chance, but I never felt like I deserved it. I never felt like I was worthy of someone as humble and kind as my husband who waited for the right relationship. I could not convince myself that he wanted to be with me. I still try to remind him that he will eventually figure out that I’m not worthy of him. He still tells me I’m too pessimistic. We have always been at the opposite ends of the glass half full/empty debate. Actually, our glass debate plays out more like this; his is full of shiny, sparkling water poured fresh from the mountain stream and mine is dirty from the mountain debris.
If you were to ask either of us the same question, you would likely get the “sparkly” story from him and the “grimy” story from me. I tell him I am being honest and I feel like he doesn’t want bother anyone with our problems, so everything is usually great when he tells the same story. Maybe we are both in denial, I’m in denial that things can get better and he’s in denial that they will keep getting worse. In recent years, his glass has got a little dirty and it is been harder for him to hide it’s true contents.
He and I were presented with the option of brain surgery for our little buddy twice before but always opted for other methods. Those other methods would work, sometimes for an extended period of time, just to fail in the end. In the eight years of his little life he has made so much progress and regression of the same skills, we have wondered why we continue to work on those skills at all. Then almost two years ago, I was diagnosed with rheumatoid arthritis. It isn’t my imagination, the other shoe keeps dropping, the rug keeps getting pulled out, the last straw always breaks the camels back…… How can I see my glass as anything but full of crap? Yes, I try to see the silver lining, focus on the positive, appreciate what I have, stay strong………… but I certainly think I have every right to fear the worst because it keeps happening. 
So as much as I want to celebrate this success, I am cautious of it. He was seizure free for almost a year before they came back and worse than ever before. I’m not sure there will ever be a time I’ll breathe a sigh of relief and it makes me so sad. I want victory for him but his disease is as complex as the name suggests. More tubers can grow, the ones he has can get bigger, and they can complicate other organs of the body. Tuberous Sclerosis Complex is a terrible and nasty disease that steals my joy over his victories. I know, there are some very well meaning people who are reading this who want to lift me up with the right words, but this time, just hug me or him the next time you see us or call us and ask us how we are really doing, it’s been quiet since we have returned from surgery. My rheumatoid arthritis has been getting worse and I’m barely able to be up for more than a brief few minutes at a time. I miss my life and I miss my joy. For now, it’s drowning at the bottom of my crusty old glass. This doesn’t mean that I’m a terrible person, just an honest one. I’m struggling in a time where I should be experiencing joy, but that isn’t something that surprises me. I just don’t know when I can let go with confidence that it will be alright. For now, I’m joyful and confident about those things this disease had never been able to steal, like his smile. 
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​So yes, I love snapchat, I can manage to make myself look better than real life, which can be quite a feat some days. It has been hard to find an ounce of confidence these days and on Monday I went in and had my hair cut off. Our recent family photo shoot was a race against time for me, or a race against my hair. The medication I take for my rheumatoid arthritis and stress has been making my hair fall out by the handfuls every time I shower. It has been harder to hide my bald spots and even harder to make myself look partially decent with thinning hair. I expected to deal with some of this at some point in my life, just not in my thirties. 
Being chronically ill sucks. It has changed every ounce of who I am and I am struggling to accept any of these physical or emotional changes. I never thought the physical changes would bother me so much but since my hair started falling out, I feel like there is no way to make myself look like “me” again. I look in the mirror and wonder who the woman is staring back at me. My weight fluctuates quickly, my hair is thin and brittle, my face looks like I’m in my teenage years, and it’s hard to smile through it all. Who am I and what am I supposed to look like? Next week will I have any hair left? Will my medications make the dark circles return under my eyes? Maybe I’ll look twice my age before long and I often wonder how the disease has advanced the age of my body. How many years will I have left? Should I anticipate an early death? It’s funny how many other things a handful of hair makes you think about. It’s hard enough being a woman and approaching forty, but approaching forty having a disease most people relate to those more than double my age is depressing. Really.. I hear, “You are too young for that.” Unfortunately I don’t understand the point in telling me that because disease doesn’t care how old you should be when you get sick, it’s destructive just the same. 
So I’m sliding closer to forty and further away from thirty and I have a lot to think about, mostly, can I look and feel better and maybe finally accept all that is happening to me.  I doubt I will anytime soon because it still p’s me off. I know I have to figure out who I am and try to like myself, with my disease but it’s a particularly hard task for me. I, like my grandma, struggle with letting the opinion of others define me, especially those who don’t like me. Am I alone? I bet not.
I bet there are many other women like me who are in their thirties who feel like we just graduated from high school and wonder what happened to the last twenty years. I remember very clearly when my dad turned 40, it seems like yesterday, yet here it is quickly approaching. Sadly, I feel like I’m still in high school when it comes to how I view myself and how others view me. I feel like there is always a few haters that are watching me and waiting to tear me up and I know I have a few haters, including me. I hope I can figure out a way to accept my haters and exclude myself from the group. I have to learn to love myself, I’m just sad that it may take me until I’m forty to accomplish it. 
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