"Suffering the Slings and Arrows of Outrageous Fortune"

Before EDS infiltrated our life, our focus was homeschooling. These days, Em isn’t able to do anything in the way of formal learning. I have come to accept it and my focus has changed – I am concerned with keeping her in one piece and surviving until adulthood. My plans, hopes and dreams for her have all changed and academics are the least of my concerns. Her older brother is also homeschooled and he often makes do without me but that isn’t far from the model I was aiming for anyway – by high school, kids should be largely self taught. I just didn’t intend to be quite so hands off so early.

Anyway, this weekend was the Cincinnati Homeschool Convention. Last year, I went for the whole weekend with 3 other friends and it was a great girls get away and a time for me. I remember being a bit concerned about leaving Em, she was dealing with the ongoing patella dislocations and her fingers were going from time to time, but my concerns were mostly run of the mill mommy worries. This year, I really, really wanted to go but I just could not leave Em for 3 days. I decided to have Andrew take me on Sat (if Em was well enough) and Em convinced me that we should leave Friday, stay in a hotel and go to the Convention on Saturday. So that is what we did – my mom ended up staying with the kids so we could go. In all, we were gone about 24 hours – didn’t get to go to any of the workshops but I did do my shopping.

Like so many other ‘normal’ activities these days, I struggled and was teary eyed most of the day. Every where I looked, people were ‘normal’ and it was a bit overwhelming to be honest. The booths and venders were selling ‘normal’ curriculum to ‘normal’ parents who have ‘normal’ kids.

Last year, I was one of them. This year, not. Everything reminded me of what Em can’t do anymore. I had to step out a couple times so I didn’t make an idiot of myself. I know it is all part of the grieving process, but knowing that doesn’t ease the sting. And, of course, I saw people I know and haven’t seen for a while and had to give them updates on what is going on. I am blessed to have such good friends and it is such a blessing to have so many people praying for us.

One vender I was  specifically headed for was the Notgrass booth. They have some great history materials and have a new Jr High American History. I was wanting it for Em because it will be flexible and allow her to move at her own pace – when she is better.  The Notgrass booth is one I had to walk away from in tears and compose myself- it was just so hard to pretend I was a normal homeschooling mom when my heart is breaking.

When I finally made my way back, it turned into a good experience. I was in the middle of having Mr. Notgrass get me some books that I needed when a good friend walked up and started talking to me. Gave me a hug and we both were in tears. We talked for a few minutes and I filled her in on the latest with Em and shared how I was struggling. Eventually, she left me to get on with my shopping and Mr. Notgrass helped me finish my purchase. As I was checking out, he mentioned that he couldn’t help but overhear that I was having a problem and asked about my troubles.

I didn’t go into the details, just told him that my daughter is very ill and we are having a really hard time. He was very sympathetic and said he would pray for us. Most likely, he will – that is how they are. They are good folks (it is a family business) and I was very touched by his kindness.

Little things like that make me remember how blessed I am.

So, in addition to the literature based history curriculum I purchased, I also ended up getting a couple lapbooks and unit studies for Em to do when she is feeling better. Lapbooks are probably the answer for her in the foreseeable future as they are self pacing and versatile. I will be overjoyed when she is able to function again.

Back to the medical side: Last night, she popped her neck and ended up in a lot of pain, very dizzy and nauseated. She was even having a bit of trouble breathing. Ever since I was reading about sudden death associated with atlantoaxial instability (the specific term for her cranial instability), I have been freaking out a bit. I was tempted to take her to the ER and then decided not to since I was probably overreacting. Then worried all night that we should have taken her. It is such a huge responsibility.

I don’t want it to be AAI but if it is, we have to get if fixed as quickly as possible. We see Dr. Parnell on Tuesday – hopefully we have a few more answers then. I think we need to approach the Chiari Institute – they will be the ones to help if anyone can. Not sure how Dr. Parnell will feel about that – but she is leaving in May so our time with her is limited. Once she is gone, we will need a plan. If we end up being referred to a neurosurgeon at Cincinnati, that is fine. But I am convinced that our final destination will be The Chiari Institute, since they are the premier of the few who do the cervical fusion on pediatric patients.


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