There are days...

...when you just want it all to stop.

...when your tired.

...when you want to announce to everyone to just...stay out, give us one day. Please.

...when you just want to be the mom. The one in charge of her care. The one responsible.

...when you realize that enough is enough and you need to take her home.


So let me preface this post with a few statements. If you happen to be a nurse, please don't think I am attacking you or anyone in your profession. If you work in a PICU, don't go on the defense here. I am not upset with ANYONE in your profession, in THIS hospital, in the LAST hospital, or in ANY hospital we have ever been in. I'm not. I'm just sad today. Thats it. PLEASE don't read anything extra into what I am going to share. Just don't. Again, many of my very closest friends are nurses. Ashley Kate's nurses. Past and present. I will share with you all that the angriest, most hurtful, damaging comments in the last four years have come from nurses thinking that we don't appreciate what they do. Its ridiculous, because if you know us at all, really know us, then you would know that our appreciation and gratitude and respect for these professionals runs higher and goes deeper than ANY OTHER MEMBERS of Ashley Kate's teams. My nurse today was wonderful and kind and all you could ask for. This post is not a reflection on anyone. Its just where I am today in the journey.

Anyway, with all that said, my heart is sad today. It just is. I'm tired. Ash is tired. We are all tired. Home has never sounded so good. It has been 10 very long weeks this admission. I'm just ready to be the mom again. For some reason it is assumed that a mom's responsibility ends the moment your child becomes a patient. This is such a ridiculous assumption. It really is. Every day of Ashley's life I have changed her diaper, emptied her ostomy bags, given her meds, dressed her wounds, bathed her body, connected her lines, and taken care of her. It is my job. It is what I do. Let me do it. Please, just let me do what I do. If you would like to do it yourself, then at least ask us. Please.

I went outside today. With my daughter. You see, she's still my daughter.

I didn't go without permission. I had permission. I was told, "Take her down and let her see outside." So...I did. With her oxygen tank, IV pole, and stroller we went down and went outside. It was the first time she has been outside other than transfer to and from an ambulance to a jet since July 4th. Yes, we were still patients on the holiday, but we walked miles and miles and miles around the outside of our home hospital that day. I sat on the concrete next to Ashley in her stroller. People came and went. Most smiled as they passed. I watched the breeze blow in her hair and I allowed the sun to warm her skin for a while. She was so calm. Her breathing slowed, the violent sounds of the stridors disappeared, and she laid her head back in the sun and slept. I cried. My heart was so sad in that moment. I don't know if you can understand the sadness unless you've lived in a hospital for months with one of your children. Unless you know that the end of their life is now closer than you've ever thought possible. Unless you have watched their joy for life dwindle day after day as they lie in a bed in a room so void of the sun and the wind and the world. It broke my heart and blessed it as that breeze blew strands of her hair across her face.

It put the floor in a small panic. You see there was no written order in the chart for her to leave the floor. I didn't know their needed to be one, and in all actuality there doesn't. I'm her mom. Her parent. The responsible party. So...thats the way it is. I was told, "You need to take her down and let her see outside." Thats what I did. I took her. The nurses wanted to come with us. "Ok, if you think you need to, but I do this all the time. Just me and Ash. We live in and out of hospitals and I'm used to pushing the pole. Come if you'd like, but you don't have to."

At the end of her life and ours there will be two people held accountable for her days. Me and Dave. Its our job. Our responsibility. When she leaves this earth it will be our hearts that break. If taking her outside today was the only act of normalcy that I was given the chance to provide for my daughter, for this little girl, this miracle child, then I'm glad that is what I chose to do. We went outside, with permission...so sue us. I promise you if something had happened we wouldn't sue you or this hospital. Its the way life works with our daughter. She's going to die. We know that. Whether it be today, tomorrow, or years from now... she won't live to adulthood without a miracle. We are accepting that fact. As painful as it is we have no choice but to accept it. Just allow us to go outside on the days that she feels good enough to go. Its the least anyone can do for us.

I want quality of life for Ash. That doesn't mean we are upset, ungrateful, or angry. It just means that our days are limited and we want to go home to spend those days outside if we so choose. Thanks for listening, and if I happen to see any familiar names pop up that we know have been unkind toward us in the past just know that I'm going to delete what you have to say without even reading it. You might not want to waste your time.