Headed Home

Dave and Ashley Kate were discharged at 6 this morning and they are on the road toward home. I can't even begin to describe the appreciation we feel toward the staff at Sutton Children's hospital. The people there are fantastic! Truly they are. We have been taking our precious Ashley Kate to them for over three years now and we have always been treated with such intense kindness and respect that it blows me away. From the top to the bottom you will only find the kindest of people in that place. I love them for taking such great care of us. I say us because it is the first and only hospital (out of 9) that has our family, not just Ashley Kate, in mind as they care for our daughter. It is amazing. As much as I hate being in the hospital with Ash, they make it as good as it can be. I really, really appreciate all they do for our family.

Discharge by 6am? that doesn't just happen. Dr. Brown, Brian, Rosalyn, and our nurses this admission...thank you for pulling that off for us. We appreciate it more than you will ever know. More than you will EVER know.

The staff, especially our staff of physicians, want Ashley to have quality of life for the time that God gives her to us. It is their priority, just as it is our, to give her as much time at home and with our family as possible. To have that vision in mind, that priority as they take care of our daughter, makes all the difference in the world. Our time is precious, it is valuable, and it is short, and they get that. We will spend today at home instead of waiting around the hospital to be released.

Wednesday evening Ashley and I spent precious, quality time snuggled up in her bed. Yes, I said her hospital bed because she insisted that we be in it together. That tiny girl laughed, and giggled, and signed, and played, and listened as we "talked", until 4am Thursday. I remember lying next to her thanking God that I was being given those moments with her. It was a night I will never forget. As my little girl finally began to settle down, and with her soft, tiny hands on my face I began to share with her what I knew of Heaven. It was in those moments that I realized I had never even told her about it. Through my tears I told her about Jesus and how very much He loved her. I told her that one day we would be there together. I cried and she giggled as I talked to her about streets of gold, and the angels, and the Father. I don't know where it all came from. It just seemed right to let her know that one day she would meet Jesus and I wanted her to know that when she did there would be no more of her tiny tears falling, and no more owies, and no more TPN, or hospitals, or pain. It was the most precious and most painful conversation I have ever had in my 36 years. As my youngest daughter drifted off too sleep with huge green hospital gloves on each hand(she insisted on wearing them) the Omegaven infusing into her veins, I selfishly prayed that it would be a very long time before she had the chance to meet Jesus. The tears from my eyes began to soak our pillows as I realized that she would more than likely be there before I was and something about that is just not right. Its not ok. Its just not.

I have no plans of losing my sweet girl today or even tomorrow. I'm not being negative so please don't tell me that I am. I'm being real. I'm faced with the frailty of her life and the frailty of her life line/central line every single day. Without it my daughter dies and at this time it is not stable. She is stable, the line is not.

As the realization came to me that Ash could very well die before her daddy or I, I felt the overwhelming need to KNOW what will happen to my daughter if she does have to leave us. I'm not opening this up to opinions, or different religious beliefs. Please don't jump on that. I make no apologies and I certainly don't hide the fact that we are Christians. We do believe that a relationship with Christ is the only way to heaven. I won't preach at you if you don't believe that very truth, but I will be happy to share my faith with you if you would like. I won't be swayed in my beliefs. I'm searching for Biblical answers, truth, that assures me that my daughter who has no ability to understand who Jesus is will indeed go to be with Him. That is where my focus is as I read the word. I'm looking, searching, for answers in a situation such as Ashley Kate's. I know He loves my daughter, I need to know that she will indeed be with Him if He calls her from us. I need scripture to back that up. Not assumptions, not ideas, not opinions. Scriptural truths.

This morning as I sit and wait for my husband to bring our youngest daughter back home where she belongs, my heart is heavy as I realize that this is just one of the homes she will be in during her childhood. She is headed toward another home as well and my prayer is that the journey will be a very, very long one that takes years of her staying in ours before she arrives there.

Shes headed home and my heart can't wait for her to arrive. There are new packages or "surprises" as she refers to them under the tree and her eyes will light up the moment they walk in just as they do each morning as she opens them to find the Christmas trees are still here. The lights are still twinkling. The season is all around her.