"We keep trying"
Yesterday was a rough day. It hit me hard that life is not what it was and that it may never be that again. I cried big tears and had big questions about how we are supposed to live this life. I hate that Blake was in the car to witness my broken heart, but there are times when it sneaks up on me when I don't expect it.
We had a great plan yesterday afternoon. A plan to spend a normal afternoon with our kids doing something families do on a yearly basis. I was excited for Ash that she was home and I just knew she was going to love this. She didn't love it. She couldn't enjoy it and it broke my heart.
Ashley wants to be in the car 24 hours a day. Its her new thing. She wants to see the world, even if it passes by her window at 70 miles an hour. It makes her happy. It has become her only happy place the last two or three weeks. We take a lot of drives. Long drives during the week just so she can get out and watch the world go by her window. She smiles, signs for the music to be turned up, and turns to look out the window. Every morning she wakes up, points to the IV pole, signs for her back pack, and then signs "car, bye-bye". If we don't go then the crying begins and it doesn't stop. She can cry for 3 hours straight giving the same signs over and over and over again. Nothing makes her happy unless we take her to the car. It doesn't matter where we drive to as long as we are driving.
So yesterday I thought I could combine some of the things she loves on our Sunday drive(yes, we now have Sunday drives just to keep her content). I thought since she loves her wagon, loves being outside, loves pumpkins, and loves to drive that a drive to the pumpkin patch would make for a wonderful day for Ash and our family. My big kids were "thrilled" as I'm sure you can imagine about the idea of taking family photos, but in all honesty they were excited for Ash. Only it didn't go well. It wasn't what I had hoped. In fact it was miserable and she was miserable and it hurt. It broke our hearts to see the little ones running around picking pumpkins, playing with the farm animals, jumping on the back of the trailer for the hayride, etc. Our Ashley couldn't enjoy the experience. She just couldn't. She cried and signed to be back in the car driving. She hated every single normal thing she should have the ability to enjoy. It was heartbreaking. She screamed, she cried, she vomited, she was miserable. After spending mere minutes witnessing her reaction we put her back in the car and tried to salvage what we could of the over inflated price of entrance. The big kids grabbed our pumpkins from the patch, posed for pictures to try and ease the disappointment of their mom, and made the most out of what they had long outgrown. This trip was for their sister and since she couldn't enjoy it, they tried to.
I cried. I tried to hold it in, but once inside the car and seeing the joy on her face as the world passed by her window I just couldn't help it. I tried to make sense of her desire to merely watch the world pass her by since she couldn't participate in it and it broke me. I asked Dave, "What are we supposed to do?"
"I just want her to experience life, to have the ability to enjoy the world, to live in it. I don't know what we are going to do. This should of been wonderful and it wasn't."
His answer..."We keep trying. We just keep trying and we don't stop trying to give her all the experiences we can. We never stop trying."
It seems silly that a field full of pumpkins could break my heart the way they did, but it was so much more than a field full of pumpkins. It was a part of the world that my daughter is missing out on and I wanted to give it to her. It was tradition, and memory making, and all of what I've built our little family on. It was a day specifically chosen and designed around the things she loves and yet her body, her mind, her abilities could not allow her to embrace it. A year ago she could have, yesterday she could not. It was a day that I realized the cold, hard facts of what we have lost and it slapped me in my face.
I will try again. In a different setting to get some pictures that might capture even the smallest of smiles, a little bit of joy, a sense of who she is, as she sits next to a pile of pumpkins this fall. Maybe on a different day, when she feels more like being happy, it might work. Yesterday was just a rough one. We witnessed her tiny body not work the way it was designed to and we saw up close once again what she was robbed of at birth. It hurt, but today is a new day to find some joy in whatever we can for her. If it can only be found in the backseat of my explorer than so be it. Guess I'll be driving around after I fill the tank back up!
There are signs that her body is not functioning well, and then there are signs that other things are getting better. Life is very complicated right now and the decisions looming weigh on our hearts heavier and heavier each day. Time is short anyway and as the days on the calendar turn from one to the next it feels as though what I'm carrying is getting to a point that I'm not so sure I can keep doing it. Do we go back as fast as we can or do we give her a few more weeks here in her home? I'm so confused. I hate this. I hate knowing that once I take her there are no guarantees that I will bring her back. The thought of going with her and coming back alone haunt me every single day. Why can't she just live without a bowel? I ask Dave over and over again "why can't she just stay alive like this?" Why? He goes through the medical jargon with me over and over again trying to get me to see that some organs are vital for life and others are not. A bowel? A liver? Unfortunately, these two are. You can't survive for long without them. I don't want to do this to her again and yet I am witnessing that she can't keep going unless we give them back to her.
I don't want to talk about this anymore. I just can't. My posts are few and far between because its ugly in this place that I find myself and I don't want anyone to know this is where I am. I hate being sad and scared and unsure. I hate all of this. I just wish we could have done something to save her bowel. I wish with everything in me that she would have come out on the other side of rejection like she did the other times and that we were home doing nothing more than working to advance her feeds. I just thought that was hard! Who was I kidding? This is hard. Starting over is hard. Hoping to be given another chance and not knowing if she will is hard.