The first day of the rest of our lives

Since F's diagnosis, I have not been able to sleep. All I can do is scour the Internet for information, email specialists in the field of connective tissue disorders, contact networks and foundations for as much information as I can get my hands on. I mean, that's what a mother should do right?

My head is reeling! Chiari Malformation, what???? A side effect that many with Ehlers Danlos Syndrome develop. No one told me this! Dysautonomia? Ugh really? There is such a thing as too much information. I'm overwhelmed and over stressed to say the least. My husband keeps saying "what? Really? Why? When? How?". "Can I sell a kidney?". He's overwhelmed with all of this new information just as I am. It's to be expected. She's our baby. We don't want to think of any of these things happening to her. I mean seriously, we have enough to deal with right now. I just keep telling myself, the more information the better. It hurts, it's frightening but at least we know what to watch out for. If she starts complaining of terrible headaches or pressure then we haul ass to get her a MRI instead of not knowing and it being too late. Better to be over prepared then it is to be ignorant to it and getting blindsided.

Seriously though, when are we going to be able to sleep again? When are we going to be able to not stress and worry about every single aspect of our lives, most importantly about her life? We won't. This is our new life.

Tomorrow (rather today if you wish since it's after midnight) is the first day of the rest of our lives. Day one on our road to help F. Her treatment plan or "prevention" plan as you will since there really isn't a treatment, starts at 3:00pm. Beginning with day one of intensive therapy. I'm not sure I'm mentally prepared. I'm nervous, will she be scared? Will she be in pain? Will she hurt tomorrow night after this all? I don't know what to Expect and we get to do this 3 times a week indefinitely. That's not including everything else we have to squeeze in for her all week. Every week.

This is my new job. Being a stay a home mom for the last two years has been a great job but I literally mean this will be work. I don't care how long it takes or how exhausting it is or if we have to live in a card board box down by the river in order to pay for it all. I'll do it without a moments thought. F deserves us to push and fight to give her the best chance at an active, happy, pain free life. There are no things or vacations worth more than our daughter's well being and happiness. She is our joy, our love and our life.