Thats what her daddy said to her early this morning as they rocked together still wearing their "bed heads". It made me giggle to sit across the room and listen to him try and be serious with this little girl banging on his head.
"Today is March 20, 2008 and I think that by March 20, 2009 you should be saying a thing or too. I'm going to give you a year to learn how to talk and then I want to know all the things you've been thinking. O.K.?"
He tried to sound stern and she just sat and there pretended she couldn't hear him. I smiled because I wanted to know "just what your going to do if she doesn't?"
"Well, I'm not going to discuss that because she's going to be talking and then I'm going to tell her how proud I am of her. I just believe she's got lots of things to tell us about."
Bitter sweet conversations. Giggles and Tears.
"Remember when we thought she would be talking by now? We used to always say, "she'll be doing this by now or that by now", I asked.
Dave didn't really reply this morning. I saw the tears well up in his eyes and he just kept on rocking our baby gherkin.
I have had a lot of people ask questions along these lines lately so I thought I would take a moment to answer them. I'm not offended by your questions, but I won't lie and say that it doesn't sting when we have to see it in type, say it out loud, or think too much about it. I wish it didn't hurt, but I am afraid that when the dreams you had for your children just don't come true that there is pain associated with the realization that they haven't and may not.
So here are the answers.
Ashley Kate does not speak. She used to. She had just begun, and then in January of 07 she suffered a cardiac arrest. Code. CPR for 10 minutes. She was speaking the hour before it happened and has never said a word since. No one on our medical team has ever said that this why she no longer talks, but I'm her mom and I saw what happened. She was playing on my lap saying, "my momma" over and over again as we sang and clapped and read books that afternoon. As I held her and she babbled the cardioligist stepped in, introduced himself, said he needed to do this and that and the rest is history. So no she does not talk. Will she ever? We are hopeful that someday(by March 20 2009 according to her daddy) she will again.
Ashley Kate does not walk. Nor does she roll over, or crawl, or creep, or pull up, or have any interest in doing so. Not because we haven't tried. Or not because we don't continue tying. She works hard as do we. She has countless hours of therapy, but each and every time we start to make progress she has a set back and we wind up in the hospital again and again and again. There is no evidences that she can't. There has never been even one physician who has found any reason for us to think that she does not have the physical ability to do so. She just doesn't.
We think she doesn't think she needs to. This is probably one of the most painful areas of Ash's life for Allie to deal with. She has lots of friends with baby brothers and sisters who are Ashley's age and they all crawl and walk. Al has to repeatedly answer questions that have no good answers. We don't understand it ourselves and so its hard to help her understand. Its even harder for her to help her friends understand when they ask things like, "Well, why doesn't she? Whats wrong with her?" In Allie's heart these questions sting. She doesn't want to think that anything is wrong with her baby sister, but it is constantly pointed out to her that something is. This makes me cry. I'm trying to come up with a way to help Al get through this.
Will Ashley ever catch up and be normal?
We do not know. We do not want to limit her possibilities so we answer this question by saying, "We hope so. Someday she will." To be completely honest. We have no idea. We hope. We wish. We work. We pray.
Does Ashley Kate eat? No. Not by mouth. She has on again and off again success with baby foods, but she will take nothing with texture and she has never chewed anything. We will battle feeding issues for a long time with our little one, but we keep working, keep encouraging, keep trying.
Did Ashley lose her hair again?
Yes. This is killing me! Honestly, I know this is the least of our worries, but hair matters to me. She has very little of it left and for some reason(probably because I want her to have it so much) it comes out each and every time she becomes ill. The "ponytail" days are a thing of our past, but don't you worry because we have LOTS and LOTS of BIG< BIGGER< and "watch out you ain't seen nothing yet" BIG kind of bows on their way. Hair or no hair this child was destined to be a princess. (I'm not joking about that last statement!)
What organs did Ashley Kate have transplanted?
A liver. A small intestine. A pancreas.
From everything that we know she was born with normal organs. Premature, but healthy so to speak. She developed a disease called NEC within the first week and half of her life. Basically that means the tissue of her small intestine began to die from being fed before it was developmentally ready to digest food. Lots of babies develop NEC in NICUs, but many of them survive with no long term damage, and many of them die from the disease. We are blessed. Ash survived it without a mommy or daddy there to fight with her. Oh, we loved her. We were fervently praying for her without even knowing she was fighting for her life. We were in court seeking the legal papers to allow us to get to her as fast as we could and I haven't left her since.
Her small bowel never recovered and never gained the ability to absorb food or nutrients. So she was fed inrtaveinously. The content of these feeding kept her alive, but killed her liver in the process. By May of 2006 she was dying from liver failure, and we were desperately waiting on the Father to show us what to do and which way to go. Ultimately Ashely Kate received her new organs 20 days after being listed on the organ transplant waiting list and that was just one more miracle He worked in her life.
The pancreas was transplanted just for fun. Not really, but kind of. Her pancreas was fine, but they left the donated one attached and hooked it up along with her liver and intestine. She now has two that both function and operated inside of her tiny body. Really amazing huh?
To be an organ donor is a selfless act that brings hope to those without it, gives time to those who are running out of it, and helps heal hearts in those families who are helpless to stop their loved one's disease from stealing them away. I would say from the bottom of my heart that if you chose to become an organ donor I would forever be grateful to you. You have no idea what a gift it becomes to those who are in desperate need of a miracle. Please consider it, you won't be needing those organs when the time comes anyway.
So what does Ashley Kate do?
She lives. She laughs. She plays. She shines. She sparkles. She has joy. True and uninhibited joy. She cuddles. She giggles. She watches Blues Clues and Baseball. She lights up for her daddy and she holds on tight to her mommy. She waves hi and bye bye. She claps. She celebrates. She completes a family who waited a very long time for her to arrive. She makes Allie the big sister she always longed to be and she brings a smile to a big brother who absolutely adores her. She inspires. She changes hearts. She leaves her "prints' all of over those who love her. She does everything that He has in store for her to do at this time in her life. I have to keep reminding myself of that when the tears start to fall.
So when I look at my sweet Ashley Kate I try and concentrate on all the things she does do and the things she doesn't yet do I tell myself that we have a lifetime to work on them. I think thats a good way to look at it.
