When Thanksgiving Does Not Come Easy

Disclaimer: I really just wanted to write this post for me. So, it's really long and there's basically no pictures. I won't be offended if you skip.

Thanksgiving is in two days. Thanksgiving is one of my absolute favorite holidays. Honestly, if I am ever forced to choose between spending Thanksgiving or Christmas with my family, which I hope never happens, I choose Thanksgiving. Thanksgiving has a lot less pressure surrounding it than Christmas. Even with hosting the holiday in our home for the first time. Thanksgiving really is created for fellowship with family.

However, this Thanksgiving I am having a hard time being thankful or grateful. Last Monday I received really upsetting health news. This news would be upsetting to anyone but it is especially upsetting to me due to previous health history. So, to tell this story, I need to tell the other story too.

When I was 10 years old, I had a growth spurt. I got to be one of the luckiest girls because I went through puberty in 4th & 5th grade. Post growth spurt, I was left with a left leg and left foot that were slightly longer and larger than the other side of my body. Couple this with the fact that my right leg had always been weaker than my left leg (causing a slight limp) and suddenly my pediatrician began to think there was something seriously wrong with me.

An MRI and a pediatric neurosurgeon later, I was diagnosed with something called a tethered cord and a filar lipoma. Both congenital birth defects. The filar lipoma is a benign fatty tumor created when the fatty tissues in my spine and nervous system did not develop correctly. Fortunately for me, my tumor was located inside my spinal cord causing the tethered cord (an incomplete fusion of the spinal cord). Having this birth defect meant that my nervous system did not function correctly. Without a properly functioning nervous system, your body does not grow and develop as it should.

I had spinal cord surgery over Labor Day Weekend 2000. Fifteen years ago. My pediatric neurosurgeon was ranked 2nd in the country at the time. The greatest risk in the surgery being possible paralysis. The greatest risk in not having the surgery being abnormal gait, eventual loss of bladder function, and paralysis.

They fused my spinal cord back together and removed the parts of my vertebrae that the tumor was attached to, along with the tumor itself. Surprisingly, the surgery only took 2 1/2 hours. I spent five days in the hospital and had 37 staples. For the first 48 hours post-surgery, you have to lie completely flat on your stomach so that your spinal fluid does not leak from your incision. After the first 48 hours, you want to lie flat on your stomach anyway because your incision is so swollen. I had an allergic reaction to codeine and then when I was finally able to eat again, they took my cheeseburger away before I was able to eat it. After, I don't think I ate the entire time I was in the hospital because the pain killers made me so nauseous to every little smell. You aren't allowed to leave the hospital until you can get up and move around. But, as soon as you can, you're sent home.

I spent the next two weeks recovering at home, completing all the work I was missing in 5th grade. I also think I put together a few thousand puzzles. My surgeon cleared me and removed my staples after those two weeks. He never ordered another MRI and I never saw him again. Post surgery, I got to be the only kid in the entire elementary school with permission to carry a rolling backpack because a normal one caused too much stress on my spine. I also had to quit gymnastics because I was not allowed to participate in high impact activities for a year after surgery. I also have a scar that runs from my bra line to right above my butt. It has gotten long and thick over the years, but it's hidden pretty well as it runs right along my spine.

My nervous system started to function again. Although I still have a left leg and foot that are longer and fatter than my right, thanks to surgery the difference never became noticeable or caused me to walk strangely. My growth was slightly stunted. If you knew me in real life, you'd see that I only made it to 4'11 1/2" (that half inch is SO important). But, I lie and tell everyone I'm 5'0". Although, it is hard to tell whether my growth was really stunted or I just got the short end of the stick since my parents are 5'0" and 5'7".

For almost 15 years, I experienced absolutely no issues. I graduated high school and then college at the top of my class. I fell in love and got married. I became a teacher and bought my first house. I started my Master's degree and my husband and I were planning to start a family.

Then, earlier this year, I started experiencing numbness and tingling in my hands and my feet. Occasionally, my joints would swell to the point where holding a pencil was painful. It was so much worse when I would try to sleep. Eventually I went to the doctor and was diagnosed with a B12 deficiency. Since B12 is a vitamin that is essential to neural function, my primary care doctor and the neurologist I saw, left it at that and prescribed B12 shots every two weeks, which I've been having to give myself since April.

Over the summer, the pain started to intensify again and seemed to spread to my knees, hips, and shoulders. I headed back to the doctor after I started having mild headaches and shortness of breath and was referred to another neurologist who immediately ordered my first MRI since 2000. 

Last Monday, I finally had a diagnosis that explained all the symptoms I had been having since February of this year. Chiari I Malformation.

Another neurological disorder, most often times a congenital birth defect. In this disorder, a part of my cerebellum (which is responsible for motor control and balance) has essentially fallen out of my skull and into my spinal column. The part of my brain that is in my spinal column is putting pressure on my brain stem, causing severe headaches (which started in the last week or so), numbness and tingling, and occasionally shortness of breath. Another way to look at it is that my brain is just too big because I'm so smart :) So, I'm having brain surgery. They'll remove a portion of my skull and parts of my vertebrae and possibly more depending on the severity once they open me up.

Leading up to Thanksgiving, I've spent every day on the phone with either my neurologist or someone from the neurosurgeon's office that I chose because I'm having brain surgery. I've called our insurance company to find out what we will be paying and informed my principals and teammates that I'll be out at some point during the school year. This surgery carries with it many complications (as you can imagine) but so does leaving the problem as it is.

So, what's upsetting about brain surgery, besides the fact that it's brain surgery? I'm upset because if this is a birth defect, why didn't the #2 surgeon in the country think to look for it 15 years ago? I thought that I was healthy, only to find out that not only am I unhealthy, I'm deformed. I'm upset because we were ready to start a family. I was supposed to stop taking my birth control next month, not have my skull cut open. I still don't know how long the healing process for the surgery is but it has the potential to throw a huge wrench into our family plans and professional plans with finishing my Master's degree.

You can see why I'm having trouble feeling thankful or grateful for the situation I find myself in. I am scared and I am sad and I am really, really angry. 

And although I still finding it difficult to be grateful for, I have a lot to be thankful for.

I am thankful for neurosurgeons and neurologists and modern medicine.

I am thankful for family. 

For parents that call me every day to check on me.

For a baby sister that drives me to and from my MRIs when I am loopy on anti-anxiety medicine.

For a husband that attends doctor's appointments with me and works to find me a fabulous surgeon.

I am thankful that post surgery, I will still be able to be a mother.

I am thankful that despite all my birth defects, I look healthy and whole.

I am thankful that my disorders are fixable when so many birth defects are not.

I am thankful for understanding bosses and supportive coworkers.

I am thankful for my job as a teacher and this week of holiday break because I needed it.

I am thankful for my Savior, through which all things are possible, including brain surgery and healing.

I am thankful to Him because despite all the tears and stress of the past week, I can handle this.

I am thankful to Him because despite ALL of this, it could be worse. 

I am grateful for this situation because it reminds me that even so, it is well with my soul.

This will be the best Thanksgiving because every morning I wake up I am reminded that I will be okay and I have too much to be thankful and grateful for not to be.

If you actually made it through that, happy almost Thanksgiving from me and my giant brain!

From our anniversary pictures here.