Hours between seizures rather than minutes is an amazing privilege.
A few days lost this week, although for the most of these captures, the recovery is well. We take this brief chance to do all that we can, how nieve we were to believe we could work Pipers therapy into a schedule, we try to take charge of our lives and introduce what we feel is best, best to succeed, best to move forward, best for our family, for our little girl. We are instantly reminded the decision is not ours to make we do not have that honour, that privilege, nor the control, so we'll amend our thoughts and play by the rules of a powerless body to a powerful mind. We may not yet understand you or why you choose to play this cruel game of give and take, but we are finding strength in our days and power in our knowledge, we are building a team of extraordinary and brilliant minds who are just as curious to find you, to conquer you! We see you steal moments of life away, we see you strike with incredible force as we stand helpless feeling powerless against you, we struggle to understand why the innocents of our baby girl is cast upon by your shadow, there is so much you've already taken away.
There are days of heartache and then we receive days like these.... when we are reminded..we're already fighting the odds, we're further than ever expected to be! still fighting, still searching for the answers that will find your name, assisting us to better prepare our little one for the battle against you.
Last week was amazing! Piper had periods of wonderful head and hand control, daily seizures reduced to under ten a day and the days that allowed a quick recovery were some of the best we'd ever spent with our girls as a family. Days with beaming smiles and knowing eyes!
We'll settle for nothing less than sunshine, strength and smiles AND Balloons!! Aunty Stace we need more balloons :)) xx
Whateverittakes#nevergiveuphope#pickedthewrongpurpleprincess#shineyourway