This Is Our Life...

6 years ago, when my husband was diagnosed with Chiari Malformation and Syringomyelia, I remember feeling this overwhelming sense of fear. To be told that the "other half of me" would be going in to brain surgery was a shock. I can remember the two of us standing in that neurosurgeon's office, listening to the doctor tell us that if he didn't have brain surgery immediately he could die soon because his brain stem was so compressed. I shook my head and silently fell apart on the inside. I kept telling myself to blink. Breathe. Just don't react in front of him. He needs me to be strong. I did most of my crying that night after he went to sleep. We had three babies at home, one brand new. I was angry and had no one to be angry at. I was scared and afraid to admit my fears aloud. I prayed and cried and begged and pleaded with God. That surgery was the longest 9 hours of my life. The complications with his heart, during and immediately after the brain surgery, caught me off guard. I spent the night of his surgery on the floor of his ICU room-watching his heart monitor as it climbed past 200 beats per minute. That moment, late in the night, when the cardiologist came to his room and told me to call in the rest of the family. That's something I still relive at night when I close my eyes. It was the first time I ever thought there was a possibility that I could have to leave that hospital without him. When they took him for heart surgery, seven days after brain surgery, I went numb. We had never heard of Chiari, never knew what a syrinx was, never knew that it was even possible for your skull to be so malformed that it could force your brain down below your foramen magnum into your spine. It was all so much to process at one time. I never imagined that life could go so pear-shaped as quickly as it did. I know I'm making it seem like this is all about me. I know it's not. I'm not the one that was diagnosed. I'm just the one left behind in the waiting room. You see, what people fail to realize is: when someone is sick, their illness doesn't just affect them, their illness affects everyone that loves them. For the last 6 years, my husband has been suffering, fighting, and living with a Chiari and Syringomyelia diagnosis. Our girls and I have been living it right along with him. We never know what our day will be like. Until he opens his eyes and rolls out of bed, we have no clue if he will be able to walk on his own or if I will have to walk him. Picture this, if you will. He is 6'2 and I am 5'1. He's so dizzy, slumped over with nausea, and his ears are ringing so loudly that I need to shout to be heard over the ringing. Except I can't shout because his headache is so severe that he's begging me to put him out of his misery. He doesn't mean it, but it hurts my heart to see him so miserable. This is years after his decompression surgery. His left side is numb and tingling. I hold his hand or rub his arm and he can't feel it thanks to extensive nerve damage. His vision blurs or his speech slurs. His words run together. He struggles with short-term memory. He get confused easily and often complains that he feels foggy or muddled. His permanent (left side) hearing loss makes it impossible for him to hear me when I'm sitting on that side, which is every time we are in the car on the way to his numerous appointments. I drive him everywhere because he doesn't drive. I do everything for this man that was once so capable, this man that once worked from before the sun came up until long after the sun had set. I miss him, the man that he used to be. When he's sleeping all day or in bed because moving from the bed to the living room was just too much for him to consider, I feel lonely for the energy he used to bring to the room. I want that back. I want him back. I want my memories to be his memories again. I don't want to be a Chiari wife. I don't want to be a Chiari mother either. Did I mention that? Chiari can be genetic. I thought I was floored to hear that diagnosis the first time. Hearing it a second time? With my child, my first born baby sitting in the chair beside me? Floored is not a strong enough description.
Now I live with a different kind of the same fear. How will this affect her life? How do I help her deal with this? How do I send my baby off to brain surgery? Will the other two eventually start having symptoms, too? What do I say to make her feel better on those days when she's scared or hurting? I don't know the answers. It hurts me to watch her struggle to grip a pencil because her numbness or weakness is in her right side. I have to fight back tears nearly every time she comes to me with a rapid heart rate, or headache, or "my foot feels like it's not there anymore, " or her eyes feel funny, or her neck hurts, or she's falling down because her balance is off, or she can't remember how to use a chair, or she's trying to tell me something funny and her words get all tied up, or.....her list of symptoms is growing so fast that I have to write it all down. Why am I sharing this? Because, people don't get it. This is our life. I don't want anyone to ever feel this feeling that I've lived with for the last 6 years. I don't want another mother, another wife, to sit in that exam room and hear this diagnosis. I want people to be aware that Chiari exists. Chiari doesn't play alone- it likes to bring it's friends.... Sleep Apnea, Arachnoiditis, Basilar Invagination, Ehlers Danlos syndrome, Hydrocephalus, Intracranial Hypertension, Scoliosis, Tethered Cord, Syringomyelia, loss of lordosis....just to name a few. We need awareness for Chiari and Syringomyelia- all these disorders that go along with it. We need research. We need to educate more medical professionals. We need support. We need to learn how to prevent this. We need a cure. As far as surgery is concerned? It may help slow progression, and some people may no longer have agonizing symptoms, but please please please understand that decompression surgery is NOT a cure!

A Year Ago Today....And Now

Exactly one year ago today, my husband was diagnosed with Chiari Malformation and Syringomyelia and we began preparing for an extended stay in the hospital so that he could have a Chiari Decompression and suboccipital laminectomy (brain surgery.) I wrote this in my journal the day after his diagnosis:

"If I could just stop crying, I know that it would be so much easier for him to deal with this. But I can't. I cried all day yesterday, all night last night, and woke up this morning crying like I've never cried before. I feel so afraid. I just don't know what I would do if we lost him. My little girls think the sun rises just for them and their daddy. They are who they are because of who he is. He is our whole heart. Without him I don't think any of us would ever smile again. My life would never be the same. I know his operation is a MUST. That after it, he should be able to live a nice, long, hopefully normal life. I just can't get the bad feelings out of my head. I have come to depend on him so much over the last 8 years. I have always had him beside of me in the hospitals, when the kids are sick. He's been my rock. I don't know how to be ME without him there to lean on. I try to pretend that I am the tough one, but it's a big show and he plays along to make me feel strong. We both know that he is the glue that keeps me from falling apart when the whole world is going to hell around me. Brain surgery is a scary thing to face and I know it's his body and not mine, going through it. I just know that it's my entire life on the line if things go horribly wrong. I have built my entire existence around loving that man for the rest of my life. He promised me a long time ago that we were going to live to be 148. I know it's silly, but I have always planned to make it as close to 148 as humanly possible with him growing old right beside me. I want this surgery to be a success so badly that I am almost afraid to even pray for it. I fear that God is angry with me for some reason. Bad things just keep happening. I pray that it stops and that our lives can get normal for a LONG while, but the bad things just keep coming. I know I need to stop thinking negative thoughts. I know in my mind, that I need to stay positive about his operation and recovery. It's just that a little part of my heart, deep down, is always thinking "what if?" and I'm off again playing this crying game. My heart aches like I've already lost him. If it hurts this bad to think about losing him.....I don't want to find out how much worse it would hurt if we really did lose him. Please God!!! I don't want to hurt like this anymore. Please, I need strength. I need him. Please don't take him from us."

I worked hard at hiding my fear from the girls, but at night, I would just fall apart. My journal became my confidant during those 13 LONG sleepless nights before his surgery. The night before his surgery I wrote this:

"Tonight was a very difficult night for us. In many ways, more difficult than any night we've had since the diagnosis. I am still very angry that this is happening and I can't get past it. I don't want to be this person I have become...angry all the time, mad at God and everyone that smiles and laughs and has a good time. Don't they know what we're going through? Do they even realize what all this means? The man I love is going into brain surgery in the morning and I don't even know if he'll make it out alive. I feel like someone is ripping my heart out of my chest! I hate this more than I can ever say with just words. I want to kick and scream and cry and beg for this to not be happening. We were laying in bed tonight and I was rubbing his arm, holding his hand, and playing with his wedding band. I kept thinking that tomorrow morning he'll be taking that wedding band off for the first time since I put it on his finger on our wedding day. It seems like that's the only thing that bothers him about the surgery. He doesn't want to remove his ring. I promised him I would wear his wedding band until the doctor says it's ok for him to wear it again, but he still doesn't want to take it off. I had been laying there in bed beside him for at least 30 minutes or so, just holding his hand and twisting his ring around on his finger, when I asked him if I was annoying him yet. He said no, why would you think that? I said, well it usually bothers you when I mess with your ring. He couldn't even tell that I was touching him! He has lost so much of the feeling in his left side that he had no idea that I was touching him at all! I feel like my heart is just breaking. I never imagined that there would ever come a day when my husband couldn't physically feel my touch anymore. I feel just so broken inside. Lord please guide the surgeon's hands tomorrow as he operates. Lord be near."

That time, a year ago, was like a never ending roller coaster ride for us. We kept waiting for the next bad thing to happen to our family. It hadn't been very long since Delaney was in the hospital and then Bobby was so very sick. I almost started to believe that God was punishing us for something. I kept telling myself that God doesn't give us anything He knows we can't handle, but it was getting so much harder to believe that. The idea of taking Bobby to the hospital and handing him over to a surgeon was just about more than I could mentally accept. I just couldn't allow myself to believe that everything was going to be okay. I felt so selfish for making the whole situation all about me, but I couldn't help myself. I had a very difficult time dealing with his diagnosis. In some ways, I guess you could say that I withdrew from life and just totally shut down. There were so many different emotions going through my mind all at once. Why now? Didn't God think we had suffered enough with Delaney's health problems? How was I going to explain this to Destiny and Paisley? Haven't we spent enough time in the hospital, with Delaney, away from my big girls? How long would we be spending in the hospital over this? How will we make it financially when he is the only one working? Was he going to die? We have 3 kids, what will I do without him? How will I take care of them alone? How can I keep living without him here beside me? How am I going to become super-mom and super-wife when I feel this broken?! Because that's how I felt-BROKEN. I knew I could depend on my parents and my sister to help me as much as they could. What I didn't know (but found out soon enough) was how hard his family was going to make my life. This surgery was not an optional thing and they really didn't want him to have the surgery. His mother is the kind of person that doesn't believe in medical intervention. She thought that he should place his trust in God and let God decide to heal him without the aid of surgery. His sister just became a crying mess. She invited him to her house (without inviting me to come along) and they all tried to talk him into not having the surgery. The neurosurgeon had said that he was quickly losing oxygen and would die in the very near future unless he had the surgery very soon. Not to mention the side effects he was having from the disease. They were horrible! When he went ahead with the surgery, as planned, they were pretty angry (that's putting it mildly!) that he sided with me over them. I felt very isolated during that time, so I started a journal. I needed a place to go so that I could vent my feelings, fears, and frustrations without having to defend myself. A friend suggested I start a blog. She thought it would be a good way to make friends while venting. She even suggested that I could possibly find others that could relate to how I was feeling and pray with me. I dismissed the idea at the time, and continued to write in my journal. Long story short, after his brain surgery on July 8, 2008 and his heart surgery (oh the drama!) on July 15, 2008 (yes, heart surgery 7 days after brain surgery!) I busied myself in caring for him and our 3 small children. I became mother and father to our girls as well as nurse to him. There really wasn't a lot that he could do himself. He was too weak and in too much pain to even dress or bathe on his own. I struggled to do everything alone for the first time in my life and it was hard. I never realized how much he helped me until he wasn't able to help me anymore. We had always handled everything as a team and suddenly, I was the only one capable of caring for all five of us. We went to his post-op appointments and he was gradually improving. We slowly found a new normal for us. He was a different person after the surgeries and it took me a long to time to come to terms with the fact that he was no longer the same on the inside. His behavior changed, his attitude changed, his thoughts were even different than before. I guess there's just something about being so close to death that changes a person's perspective on things. It was hard trying to keep up with the changes taking place in our lives.

My biggest misconception about his surgery was slowly revealed over the course of a few months. I thought that his decompression surgery was a cure for the disease. I never thought to ask. I just took for granted that the surgery=cure for him. When we went for his follow-up scans the neurosurgeon showed us the syrinx (pocket of cerebrospinal fluid) had not dissipated like we had hoped. In fact, it had elongated and now stretched half way down his spine. We were warned that eventually he would probably need to have the surgery again with a shunt to drain the extra fluid. We were stunned, to say the least. We didn't know and had never been told that there is NO CURE for Chiari. Bobby has had to change the way he lives his life. He has always been a hands-on kinda guy. His profession of choice has always been auto mechanics. He could take a car apart and put it back together again faster than anyone I've ever seen. Suddenly we were learning that the nerve damage to his left side was likely permanant. There was a very real chance that he may never be able to tightly grip a wrench (or any other tool for that matter) ever again. Without the use of his hands, what would he do? He healed over the next several months, but has never regained full strength or use of his hands. His grip will never be as firm as it once was, but he is at least able to do some of the same work he enjoys so very much. He returned to work in January 2009, almost 7 months after his diagnosis. It was life as usual for the most part. Until last week, when he hurt himself while attempting to lift something much heavier than he is allowed to try to lift. This was last night's journal entry:

"The house is dark and quiet as I write this. Our older girls have been sleeping for hours and our little one is snuggled up against me in our bed. Bobby is sleeping too, yet not sleeping quite as comfortably as everyone else seems to be. He doesn't toss and turn at all. It's the stiff set of his shoulders and back that gives away his discomfort. Not that he complains. He's likely dealt with worse pain in the last year or so. Still, I can tell that he hurts and I feel helpless because there is nothing I can do to help. Tomorrow, the pain will be worse for him, I'm sure. I see how swollen his spine looks from the outside. I can't begin to imagine what the inside looks like. His syrinx is elongated and now stretches 3/4 of the way down his spine. I wish it would just disappear. Almost all of his pre-surgery symptoms are returning, except the fainting (praise God!) I hate to see him so weak and worn. He tires so easily when he's symptomatic. The last few days have been hard on him. He knows better than to try heavy lifting(he's not supposed to lift more than 15 pounds), but sometimes there's just no way to stop him. He was always so independent before his surgery. I'm sure he gets tired of all my warnings and reminders. "Careful honey, remember your syrinx!" and "Don't lift that, you'll hurt yourself!" have become my mantra. He's constantly rolling his eyes at me. How I wish he had just listened. His neurosurgeon thinks his syrinx may have expanded further because of him not following doctor's orders. He will now have to go in for a MRI to find out the extent of the damage to his spinal cord. We may be looking at another hospital stay and a surgery for shunt placement to attempt to drain the cerebrospinal fluid. Lord be with us as we go down this familiar path again."

We don't know what's going to happen this time, but at least this path is a familiar one. No matter what, I will always be grateful for the neurosurgeon that diagnosed him quickly and operated so that we could have the last year together and hopefully many years to come. Bobby promised me that we would live to be 148. I don't know that we'll ever make it that long, but by the grace of God, I intend to make it as long as He lets us!