While I lay in my bed, I think of how incredibly grateful I am for my family. I realize my husband is affected tremendously by these day to day struggles and he is always there to help me, comfort me and protect me. I am also so thankful for my parents. My dad has been with me through this journey every step of the way. He traveled with me to The Chiari Institute to find out about their surgery suggestions. He met me in Philadelphia for a second opinion. Not only that, but they are always there to help with the kiddo's whenever we need to visit doctor's or I just need a break. I hate needing a break from them but I do. I want to play with them and have the energy and patience I need but it's not always there. Those little things make me sad but I try to stay positive and think of how lucky I am to even have children, to have people who love and understand me. I have two great men in my life (two and a half if you count my little guy.) In that... I am blessed. Some women have never known a good man. I have one who has been there to guide me through life and one who has vowed to be my side for a lifetime.
I am truly fortunate in that I have sisters. I didn't always know how lucky I was for this but I do now. They are my best friends and I couldn't imagine my life with any of them. Each of them, in their own way is perfect and special and very close to my heart. I hope they know that.
Lastly, although it is not always apparent to most people, there is a small handful that knows my pain is real. I am incredibly thrilled to have found a few close friends through Facebook support groups. They know how real it is because they experience it too...Every-Single-Day. It is remarkable to have somewhere to go with questions or just to vent with people who are living it also to give their opinions.
I am sharing with you because I hope that I can be that perspective for someone else, even just one person. I remember the first time I read someone's story and thought "That sounds just like me!" If I can make at least one person feel that they are not the only person in the world who knows this struggle, then this will have a purpose. If nothing else it is helping me to spread the word and cope with the fact that this Chiari life is as real as it can be and not going anywhere anytime soon.
One final note for today and a good one at that-after some yelling and obsessive phone calls the Neurosurgeon's office FINALLY found my 11 MRI's!! Hallelujah! That is a blessing in itself.
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