Of Shoes and Cups

​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. 
*d*

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Learn to Love Thy Self

​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. 
*d*

Now, I Am 35

Now, I am 35. Officially, at 11:55pm (August 15). A few things have crossed my mind today.

1. I will get what I HAVE to get done today and then I will do nothing but enjoy myself.

I rarely take a day off from everything. The guilt isn’t worth the lazy. Today I felt vindicated in do so. One day a year I let myself off the hook. I’m not saying I’m not lazy more than I should be, but this is the one day I don’t beat myself up about it.

2. I’m half-way to 70.

Thirty-five years has gone by and I’m supposedly an adult. I still don’t feel like it. I wonder if I ever will. A lot of days, 16 doesn’t seem like it was almost 20 years ago and that makes me worry that I’ll blink and the next 35 years will go by without me noticing. I have what I feel like is an abnormal awareness of my mortality. Not sure if it’s a residual effect of being deeply depressed for the majority of my life where I thought about life and death a painful amount, but it’s always there. It can make me overly-anxious about all the projects I can’t find the time to get done, the people I don’t make the time to see, the dreams I have yet to realize.
So, I’m making a plan, because that’s what I do. I want to accomplish more in these next 35 years. Realistic goals seem like a good start. A healthier lifestyle is in the cards as well. There’s no knowing what’s down the road, but I’m hoping for a fulfilling drive.

3. My Biological Clock is Winding Down

After years of being asked if I was going to have kids, getting married and then basically being EXPECTED to have them, I can see the light at the end of the tunnel. Most people seem to think being over 30 means you’re past your baby-having prime. That’s absolutely not true. Even at 35, it’s not too late. However, I’ve made the choice not to have any kids so this school of thought can only be beneficial. I’m so over hearing that I should have kids, that I should want to. I’m guessing that as the questions of when will I will be replaced with why I didn’t. Guess it’s time to formulate a new response.

4. I’m Very Lucky

After all this time, I’ve been lucky enough to stumble onto some pretty fantastic people. Other than my mom, brother, and grandma, my family hasn’t been close. I’ve supplemented with an amazing husband and great friends. I hope to hold onto them for the duration because without love and friendship, living to 70 won’t mean much.

I’ve learned a lot in 35 years. Mostly because over half that time was spent in school. But the valuable life lessons that smack you in the face in your 20’s are indispensable, turning 30 humbling. I’m looking forward to making some changes and setting into motion the next, hopefully best years of my life.

~L~

Love for Today

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Tonight the phrase “live for today” has been ringing in my ears. I’m in significant pain. I have rheumatoid arthritis and it has been destroying my joints quickly over the last year and a half. I suspect I have had it longer than the year and a half since I was diagnosed but the symptoms that led to the diagnosis were too much to ignore after I stopped nursing my fourth and last child. It’s been quite a ride since. My rheumatologist thought I had a pretty mild case until last summer when my symptoms became severe. The disease has made it it’s business to deform my hands, destroy my shoulders and knees, and cause me daily pain.

Tonight I am once again in my bed watching a movie, writing, resting and desperately doing anything to keep my mind off of the pain. While my family plays downstairs, I am up here in pain, wishing the disease would go into remission. I know I am not alone. There are many people just like me who are wrestling with disease, desperately wishing the pain would stop. Each day I’m in pain reminds me of the damage the disease is doing because the deformity of my joints doesn’t happen without pain.

Pain is all I think about these days. How much pain will I wake up in today? Will I be able to get my housework done? Will I be able to handle one of my son’s serious seizures? Can I get through the day? There have been numerous days when my little girls played a game on my bed, danced around my room, and seemed more than understanding when their mommy has been unable to get out of bed. Now that summer is here and all four are at home, how will all of us handle one of those inevitable days?

Today a picture did me in. It was a photo a mom snapped and posted on social media of her daughter jumping into the pool. She captioned it something like this, “my daughter is getting braver during her swim lessons”. It broke my heart because none of my children have had swim lessons. Not one of my children from nine years old to two knows how to swim. The excuses for which have amounted to one or all of the following; too many kids for the pain, the added stress of taking a special needs child, and financial stress. My kids miss out on a lot and I know I am to blame. Now that I have rheumatoid arthritis, I’m not sure if my son will ever have the opportunity to hit a home run during summer t-ball or if I will be able to see my daughters in a dance recital. Disease has not only robbed me, but each one of my kids. On the other hand, I get to spend a lot of time with my children. I get to enjoy every last minute of their childhood and I wouldn’t trade that privilege for anything in the world. I know I can’t give them all the opportunities I think they deserve, but my husband and I have tried to give them mommy. I have been here as much as possible since our oldest was born. I had a part time job for five years but quit to take care of our medically complex child three years ago. Mommy may not be able to take them to all the places they want to go, but they know I will always be here for them.

These thoughts brought me to “live for today” and was finished with the thought “because tomorrow is never guaranteed”. Nothing drives this point home quite like chronic illness. I never forget that my disease could be damaging my organs at a speed equal to the damage it has done to my joints or epilepsy could take my little boy as he sleeps at night. It’s hard to take the advice of others who think I should “keep smiling” or say, “hang in there!”. It’s hard because no one can fill in for me and take the non-stop mental or physical pain. One compounds on the other until I finally break. About once a month my husband can expect me to cry through a box of tissues. Every last worry comes spilling out and I blame myself for all these thoughts and more. Maybe it’s then when the reality of our life becomes abundantly clear; so much has changed in very little time.

It wasn’t that long ago when I held my newborn son and he was seemingly healthy. I looked at him and saw a lifetime of memories in his little eyes. I could envision a future filled with all of those things a mom expects. It took a ten second seizure to change all of that. Our little boy had an incurable disease and the future didn’t look as certain. Two years ago I could hold each of my children and not think twice about how I was going to get through the day. Now my children crawl on my lap to be held and they know they have to be careful around their now fragile mother. I wake up wondering how hard it will be to get through the day. Did I really appreciate everything I had before it changed? Do I appreciate what I have now? I hope so but since I know how fast things can change, I try to thank God for today. Today is all I have and each second beyond that is a gift. I’m still struggling with each second but I’m glad I have another.

Disease can change the future we may have anticipated for our son, my physical appearance, and the way we look at life but it can’t take away the love in this family. Disease didn’t anticipate unconditional love. We don’t have to guess if love will prevail in sickness and in health, it already has. There is no doubt if my husband will love me even if I don’t look like the woman he married because I already don’t. Our children will never wonder if something they will do will alter our love because they have witnessed it prevail through it all. I think I should change “live for today” to “love for today”.  Disease can take what it will but it can’t take our love, nothing can take that, and for that, I am truly thankful.

*d*

Goofy Grin

I’ve been ridiculously stressed, well, my whole life, but more than usual the last several months. I’ve also done my fair share of berating myself for not keeping up with this blog or any other form of writing. I kick myself about daily. I’ve had my hands full and I know that’s not an excuse. The only viable excuse would be if I were dead, or in a coma. Though I feel like I’m ready to slip into a coma on a regular basis due to a terrible quality and quantity of sleep due to allergies that never let up, I am not actually incapacitate enough to defend not typing even the smallest paragraph. I need to take time away from my hand-wringing and perfecting my resting-bitch-face, to spill onto paper what’s sloshing around in my head. There’s a visual.

Anyway, the point of this post is not to point out my short-comings but rather why I’m lucky. It’s because I have someone in my life that has it worse than I could imagine having it and she still puts me ahead of herself. *d* surprised me with flowers at work today. I read the note and got a goofy grin on my face–much like the one on the smiley face balloon attached to the bouquet–that I couldn’t shake well into the evening. It’s these sorts of things that remind me that I am loved and thought highly of even when I don’t feel that way about myself. I’m reminded how lucky I am. There is someone who thinks I’m awesome even when I’m kicking my own ass for being what I feel is lazy. I love you, too, *d*. The flowers are beautiful and you are too!

See? This guy gets it!
See? This guy gets it!

~L~

Thoughts After the Pain

While we were at Texas Children’s Hospital (my son was having neurosurgery work-up) we had at least 8 hours to occupy while my son had tests run on our last day there.. We passed by the chapel many times that week but I never had time to stop. The opportunity seemed right so my husband and I sat in the little chapel. It was round, the ceiling had tiny lights that looked like stars, and the lighting changed over the course of ten minutes or so until all the lights dimmed and the tiny stars seemed to twinkle. I admired the quaint little room for the ten minute round of lighting changes. As the lights went from dark to light, I felt a familiar presence I hadn’t felt in a while. It was the feeling of the most loved of friends. It’s the one friend that knows me like no one will ever know me and loves me more than anyone could ever love me. It was the presence of the Lord.

I have always thought of myself as a woman of great faith. I had inspiration to give to others in their times of need and I believed God could cover and heal any hurt, but for the past seven years, the hurt in my own personal life had grown and finally gave way to more doubt than unfaltering belief. Since my son was diagnosed, everything became more difficult. The older he got, the harder it was to deny what the disease was robbing from him. He has been denied the opportunities that naturally come to other little boys his age. Despite it all, my husband and I continued the same plans to grow our family as we had planned before either of our boys were born. He and I were blessed with our two daughters. Our life was indeed a mixed bag of blessings and sorrow. After his diagnosis, we would be blessed greatly with things like when our girls were born, but were faced with things like mounting medical bills that strained our finances so greatly that we’d barely were able to afford groceries for the month, if at all. Life felt more like a rollercoaster than the dream we had once envisioned.

Then I got sick. Many probably thought I became incredibly selfish when I anxiously wanted to find a cure for my Rheumatoid Arthritis when my little boy was still suffering. I may have been. I had spent the last seven years fighting for him and I didn’t want a disease to change that. I also didn’t want anything to take me from him, or any of my other children. I wanted to be here to experience the joys and sorrows because this life was meant for me and no one else, despite how much I wanted to rid our life of the lows we frequently experience. I wanted so badly to assure my place on this Earth with my family, yet my faith was weak. I didn’t understand why I had been handed this illness in addition to everything else we were given. “Why Lord do you give me a disease that is wrecking my body when you know I have a son with epilepsy? Have you forgot I NEED to physically assist him?” Enough was enough and I could not understand this cruel addition to our already full plate. I had no encouraging words of wisdom or anticipation of His healing. I felt lost and alone and I felt like He had abandoned me.

Many people can quote words of wisdom like I once did, or jump out of bed with boundless enthusiasm and a positive outlook when their life doesn’t feel like a constant tug of war. It amazed me how many people became judgmental and claimed “they would have done it better”. It’s like the first time parents who sit and judge those who already have children, claiming they will get it “right” just to eventually find out that parenthood isn’t about getting it “right” as much as it is about doing the best you can. Once someone is no longer sitting on the sidelines but rather in the situation, the answers aren’t so clear and it isn’t as easy as once thought. This is where compassion and understanding grow. It grows out of the times we are at the top of the rollercoaster of life staring down from the top of the hill almost sick with the anticipation of the next steep decline. It’s when we are facing fear, and maybe the unknown, that we possibly have our best understanding of those people we once judged. To be honest, I don’t like the person I once was, I lacked compassion and understanding. I still don’t like many of my own qualities and I know I have a lot to learn, but I do know most people only desire understanding. So this was my life; I felt like the Lord had abandoned me, I feared constant judgement, and all the while my disease, as well as Aiden’s, was getting worse. I was sick of the rollercoaster and wanted off.

One of the worst days I had this last week in Texas was the first day we were admitted into the Epilepsy Monitoring Unit. We had been running nonstop since we left home. I was already hurting but when I laid down in our son’s room (on the tiny pull out sofa barely big enough for Doug and I), the pain I was already in got much worse. Nothing I could do was enough to ease my pain. my husband rubbed my hands and wrists until I fell asleep but I eventually woke and crawled into bed with our son. His hospital bed allowed me to sit up a bit and we were already playing musical beds as we adjusted to our new surroundings. There is something more than cuddling next to him that gives me comfort. I feel like I have been allowed to understand him more since my own diagnosis, and maybe he understands me, you never know…  It is a blessing and a curse because I often wonder if he feels pain like I did that night, yet he struggles to communicate. Now I am more aware where I wasn’t before because I have been allowed to suffer. My eyes have been opened to many things since I now physically suffer.

So that afternoon when I felt the Lord’s presence so strong, I was reminded that we aren’t guaranteed an easy life. Many children in that very hospital were facing much more than I. You don’t have to be a Christian to realize this. Nowhere are we told life will be as we wish but we are given one gift, that is life itself. Life is precious. I need to accept that my life will never be free of pain, physical or emotional, but I am given the opportunity to wake up each day. Some would finish this by saying “it’s what you decide to do with it that matters”, well, I disagree. I often don’t have a choice what I can do with my day. It has been at the mercy of one disease or another for over seven years now. I just can’t wake up with a will to conquer over my disease. I can’t will my pain away anymore than my son can stop himself from having a seizure. We deal with what we can’t control first and then we decide what we can do from there. Things don’t change just because we want them to change, so reminds me of my need for people and a God who understand.

My fear of my disease has been mostly about my own fear of death. Although my faith teaches me that there is more to life after death, I was afraid. I began to allow this fear to control my faith. It was a reminder of Jesus’ prayer in the garden before his own death that allowed me to once again embrace my faith. Jesus, knowing the outcome of his own death and what it would accomplish, still agonized over it so much that he sweat drops of blood. Whether this is a metaphor doesn’t matter as much as the fear even he had over the events before him. God wanted me to know it’s okay to feel unsure of what is before me.

My son and I will still struggle but we will do it together. The path we face is unclear but we are reminded of his presence in quiet moments in a small room with twinkling lights or through people put in our lives for a reason. We are either on the sidelines watching the rollercoaster of a life someone else is living or we are in the front seat of it, it’s the understanding and unconditional loves that helps us get through because you will never know when you will be in the unexpected. All you have is right now, the precious life you are gifted. I’m going to take it, pain and all because sometimes pain is the only way God saves us from ourselves. Pain is a despised beauty that can shape our understanding and allow us great compassion. Just because it isn’t understood doesn’t mean it has no purpose. I’m grateful I still have today to learn.

*d*