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!