My heart is overwhelmed with gratitude as I scroll through the "moments" I've captured this past week or two. To be here, in our home, with these amazing people, living each minute of every single day we are given together. This is my life. Its what I do. Its why I get up out of bed every day bearing the weight of the burden on my heart. I have never been more aware of the magnitude of every single moment of this life. In a way I'm thankful for this journey because it has made us who we are. We are so different. We are so present. We are so grateful.
When I see my big kids growing up into the amazing people God has created them to be my heart swells with thanksgiving and it aches over the difference in their lives and their baby sisters. So much of this life with our sweet Ashley is about grieving along with the living. I don't think it can truly be understood unless you too are living it. Of course our hopes are high, our expectations for her are so very high, but as her mommy I also live each day with the death of so many of my dreams for her. My dreams for our "baby" have had to change through the years and they continue changing each day. At this time our dreams are simple...Live, Laugh, Love. Its all that matters. The others were never that important anyway. They were dreams of "normal", but what is more important? The simplicity of her life is amazingly beautiful and the complexity of her health status is too much for me to take in. I have adapted to the place where I am nothing other than grateful for today. This time, this minute, this breath.
Confession? I spent this morning unpacking her suitcase. How many weeks have we spent at home now? I'm not counting them because no matter how many we are given I will still feel in my heart that we needed more. Anyway, I overcame the pain, the hurt, the confusion of it all and opened that suitcase up, put away things we won't be needing next time and began packing it once again. I have dreaded this task so very much and as I sit here I'm still feeling numb over what is taking place in her life. So...it now sits in her closet filled with fresh linen, new satin pillowcases, tiny socks for her feet in the days that follow transplant, and other things I have been collecting over the weeks. Tears roll down my face at this moment. I just wanted to unpack it for good, store it away, and not face the idea of leaving with her EVER again. For some reason, one that I know I will NEVER understand this side of heaven, it is not to be. That little polka dot suitcase will remain ready to go at a moments notice as we await the decisions of our transplant team and the call for organs. Just the sight of it makes my stomach hurt. Physically I feel the pain of what lies ahead with the mere image of all that suitcase represents.
As I read from our dear friends journals to Dave over the lunch hour the words, "In a perfect world" came out of the hearts of my precious friends. To which my precious husband, Ashley's amazing daddy, replied..." I don't think it ever existed for them..." I sat for a moment and said, "for who" and he said, "That "perfect" world never existed for any of our little girls".
Not Ashley, not E______, and not K_____. I don't know why, it just never did.
So with the reality of our lives and how "unperfect" it is for my daughter I sit and thank God for the moments, the hours, the days, and all the time He is giving me with her. Life hurts, but is so blessed. My life without her in it would have never been the same. I would have missed so very much of what it means to really live.