I've looked for what words I'd like to use to share with you all about Ashley Kate, but I simply can't find the right ones. When I begin to write my heart hurts so much.
The best thing I can share about her is this...she's happy. She truly is.
She's had some good days this week. She's had some that weren't as good too. For the most part though I think she's felt ok. The way she looks doesn't quite match the way she feels.
The biggest changes we've noticed in Ashley Kate are in her appearance. When I think about it, this is what alerted us a week or so ago to new problems and her lab work confirmed our suspicions that things had begun to change. I struggle a lot with this. I've always done my best to keep her looking as normal as I possibly could. At this time there is simply nothing I can do to make her appear normal. She looks sick and she looks rough. I'm having a hard time with recent photographs of her. I've spent a lot of time looking back at pictures of her this week while I've been away from her and the changes in her appearance cause me to cry. She looks bad and she's not going to look any better.
She had an examination and eval done this week. A hard evening for Dave to endure. Not only due to the content, but also because he reported to me that Ashley Kate was naughty. She was so naughty and she misbehaved worse than he had ever seen her misbehave! He said it was truly unbelievable. She wanted to go driving to see her rooster and proceeded to yell and interrupt through the entire visit until the moment she was loaded into the car and the physician had left our house. Although it is not funny, it does make me smile and it serves as a testament to us that our girl knows exactly what is going on around her and she is still very, very opinionated about those things. Her spunk and bad attitude are good signs. There were tough questions and answers. Hard conversations. Discussing topics that no parent should ever be forced to talk about it. Its so very hard right now. So hard. The best news that came to us from this examination is that they do not want to admit at this time. Its simply not time yet. She's still too strong and even though her symptoms are changing and her illness is worsening its not time. When discussing time lines, we were told a very rapid decline...3 months...or on a slower decline... we may have as many as 18. Their best estimation, which we know is just a guess, 3-18 months.
Wow. I can't believe I actually typed that. My heart is pounding and my thoughts are racing. How is it even possible to keep breathing when you've been told your child is dying and that she may have as few as 3 months left? My heart hurts so very deep. I don't have words to describe the pain, the pit, the panic.
I'm done talking about this. I've got to move on. Concentrate on her life not her death.
She rode her bike last night.
Once she was strapped on she took off like she'd never stopped riding. Dave sent us a video clip of her pedaling along and it was just so funny to watch my girl show her independence. She was riding along and pedaling and choosing what direction she wanted to ride in. Her little feet just pedaled and pedaled. I love that girl! Freedom to go where she wanted, as fast she wanted, for as long as she wanted.
Ash is sick, but she is living. They tell us she's dying, but she's not listening. I cry a lot, but I smile too. I smile because I know my daughter. I know her will to live. I know her determination. I know her spirit. I know her spunk. I know her fight. I know there are hard days ahead of us, but I also know there are good days still to be lived. There are. My sweet Ash is so loved and so wanted. She won't go without a fight and we won't give her up without one either.
I'm looking forward to heading toward home this week. We still have 4 or 5 days of adventure ahead of us as we make our way back to Texas and although I'm having the road trip of a lifetime with my teenagers we all miss our baby so very much and look forward to seeing her again soon.
Thank you all so much for your kind words, your prayers, and your thoughtfulness. It means so very much to us. I'll never be able to thank you enough for loving our sweet Ashley Kate the way that you do.