This is my sweet Ash this morning...hiding in her "tent"...playing on her Ipad while receiving another blood transfusion. She makes her "tents" every single day. You can always find her in her "tent" and occasionally she will invite one of us into her "tent" to play. It makes my heart leap each time she peels back the blankets and extends her invitation. She is still my sweet Ashley Kate and there simply are not words to describe how deeply she is loved. I stare at her long legs and the length of her body from across the room and I honestly can't believe how grown up she has become. No longer that tiny baby gherkin we adored, but now this long, legged, little girl whom we can't get enough of. She is funny and ornery and opinionated and strong and bossy. I love, love, love her.
This morning she grabbed my hands and placed them against her cheeks. I held that baby girls face in my hands and declared again and again and again that I LOVED her. I stared into her eyes and deep into her soul and with my eyes and my voice and my touch I reassured that precious girl of mine that she was loved. SO DEEPLY loved.
I can not express the beauty I have found in the bags of blood that hang from the pole above this hospital bed. As the blood drips into her body, giving her life, allowing her to continue to go on, to laugh, to live, to love her mommy, her daddy, her brother, her big sister another day. There is beauty to be found in this gift. Because that is what it gives to those who receive it...it is a gift. Given so unselfishly by donors who will never know my daughter. Never meet our family. Never see a photograph of the little girl whose life they are saving. They just gave. I don't know why, or what prompted them to give, or how they came to the decision to go the day they did and give the gift, but I do know that I am grateful. Eternally grateful to each and every person whose blood has ever flown into the veins of my little one. It is the gift of these blood transfusions that are keeping her going. Thank you Lord for these donors. Thank you for them.
Again, we are sitting in the hospital room mere miles from her home, her bed, her playroom, her family. The kindness, the care, the reception with which we are welcomed on this floor will forever be burned into our memory. As I came into the hospital this morning there were no handicap spaces open and the valet was not yet here. Someone stepped around the corner and said, "Are you here with Ashley? They are waiting for her upstairs. Let me take care of your car. I'll bring the ticket to you later. " She grabbed my bags as I wheeled Ash to the elevator and lifted my burden. What prompted her to show me such love? Such care? I have no idea, but I'll not forget it. I won't. She blessed me. As I came into the room with her this morning there sat an orange Gatorade and a cup of ice for my girl. Why? Because her nurse knew her, remembered her, and cared enough to go the extra mile for Ash. It is the smallest acts of kindness that make the biggest impact on our hearts. The simplest things. I have learned that it does not take much to let the hurting heart of another know that you care. One of the biggest life lessons I've come to learn through the life of my daughter.
I just want to take a moment to thank you. Every one of you who have ever prayed, texted, emailed, sent encouragement, gifts, or support. Your kindness impacts our hearts. Daily I encounter the kindness and compassion of others. For the few hurtful experiences we've encountered on her journey, there have been blessed experiences 10 fold to overshadow those who have hurt us. Just wanted you all to know that we are humbled by your love and your interest for and in our baby. We love you all so much.
To my precious Omaha friends, who stepped out of the box and loved on me and my girl... I love you girls. Each one of you. I miss you all so much and I think of you often as we continue this journey. You impacted our hearts day after day and become so much more than "Ash's nurse". You became my friend. You opened your hearts to me and my family and shared your families with us. Your husbands, your babies, your parents, your lives...thank you so much. How I wish I could see you girls again.
This journey we are on is changing. Every day its changing, but it is not over. I have hope. I hurt, but I still hope. She's across the room for me hiding underneath her "tent" and so today is a good day. I'm blessed.