I have been waiting to write this post for an entire year and now that the day is here I don't know where to begin. So many thoughts and so many feelings have been running wild in my mind. Where do I begin? Do I talk about lessons learned? Changes that have taken place? Challenges that are ongoing? One day that changed so many things.
One year ago today we were at Children's National Medical Center in Washington DC. We were waiting first for Victoria's brain surgery to start, then for it to end, then for her recovery to start in earnest and then to get the all clear to come home.
I can still recall the gut wrenching fear that walked with us every day leading up to surgery. Knowing that you are making the right decision doesn't make making that decision for your child any easier. No surgery has a 0% complication rate. Knowing that you are putting your child at risk is frightening - knowing that you have no choice is terrifying. And knowing at the end of the day that if the surgery doesn't work, causes more problems or goes wrong in any way that is your pain and your guilt for eternity. Talk about a lonely place to be - only the other parent can walk that path with you. I couldn't have walked that road without Steven.
A year out and I still struggle to look back. My breath catches and the tears spring out of nowhere when I read the words I wrote here last year. It is good to remember and to then to move on.
And we have moved on. Victoria was moving on from the minute she woke up from anesthesia. Her goal at that point was to go home. Like me, Victoria doesn't do well in hospitals. Every decision she made from refusing pain medications to eating was made with single minded determination to go home. Once she got home her recovery went into over drive. As I said last year, I have seen this surgery knock adults down for months and my little girl was flying through her recovery at amazing speed.
In the year since decompression we have learned a great deal. We have learned so much - sometimes I think we have learned too much - you can't walk back knowledge - it is always there - reminding you of what you know. We know with gut wrenching clarity that brain surgery isn't just a possibility on the horizon - it is a reality - a reality that may repeat itself. There is no cure for Chiari only treatment options. Brain surgery is a treatment option.
We learned about the strength in others. The strength in friendships. We learned that when you can no longer stand on your own someone will hold you up if you let them. I learned how to let go and let others help. To this day I am humbled by the outpouring of generousity by our friends. I still cannot begin to express my gratitude for all that we were given last year.
We learned about the strength in prayer. I knew prayer was powerful, but until the day of surgery I have never experienced the power of others prayers so profoundly. I had one meltdown after Victoria was put under anethesia and then calm descended. Never once did I feel worry or doubt while waiting for surgery to end.
In the year since decompression surgery our lives have changed and that change has been for the better. It is truly a blessing to watch our little girl complete a three mile charity walk without pain. It is a wonder to watch her excel in school where she struggled before. I still hover and hold my breath when she jumps and runs and acts like every other kid in the world - but I do it from a distance now. Victoria tells us that brain surgery was a good thing - and I have to agree.