A shift in perception

A year ago today, I posted the following on facebook....  

It has been four years today since Paul and I sat across from our doctor in Cincinnati and he gave us Keyan's diagnosis of neuropathic dysmotility. We had been on a mission for years to figure it out so as hopeless as it seemed, we also felt a great sense of relief to know what we were dealing with. At that point, we made a move towards comfort care and giving Keyan the best days that she could have every single day. 

In recent months, Keyan's days have been hard...filled with pain, gagging and great fatigue. All that we thought to be normal has been disputed. Comfort care has taken on a whole different look.... one that I wasn't prepared for and one that has caught me off guard. Her doctor and nurse in Cinci say that this is how this disease progresses and that we should slow her days down in order to preserve her strength, energy, and reserve. I find myself at odds with that because we have done everything in our power to keep her woven into our busy lives but it is apparent that her body can't withstand that right now. It is so hard to wrap my head around her limited ability to interact with "life." However, as I look back at the last four years....and really the last twelve, I know that we have done everything humanly possible to give this little girl an amazing and full life....and I won't stop now, even if it looks different than it has in the past! 

That day four years ago cemented our desire as parents to never be selfish with the number of days that we have Keyan but rather be incredibly grateful for the gift of her joyful spirit every day. I am so thankful to have been shown that lesson even if it breaks my heart some days. Here's to staying strong in the dark moments and basking in the warmth of the beautiful ones!

Today obviously marks the five year anniversary of us sitting in that office for 2.5 hours across from a man that had spent over a year trying to figure out what Keyan was suffering from.  What strikes me today in the midst of my pain over her death, is the incredible amount of foreshadowing this post contains.  My life with Keyan looks a whole lot different today than it did when I wrote this post a year ago.  I remember my heart being in so much pain that her body was failing and that she couldn't keep up with us in the same manner than we had become accustomed to.  A year ago, her pain was never ending, she suffered from hour long gagging episodes several times a day that we couldn't relieve and she slept so much.  Today, she is free from that pain.  We honored her body in the most sacrificial way a parent can.  Comfort care has once again taken on a whole new look.  What I wouldn't give to be doing the hands on part of that care but she deserved better days that I could give her here on this earth.  Our desire for years and years had been that we not be selfish....that she had the best days possible to the best of our ability.  And today through tears, I can say that we have now given her the very best days...even beyond what I can comprehend, for eternity.  I am so grateful for the joy and love that she showed us and I am now embarking on a journey to learn that that doesn't stop just because I can no longer touch her.