Ashley's Story

She will leave fingerprints all over your heart


No Judgement

Not from me anyway. A few of you were questioning whether or not I was making a judgement against those who do in fact drop their kids off at pre-school and enjoy that time. In no way was I passing any form of judgement on anyone. So sorry if it seemed as such. Honestly and truly I was not and do not judge anyone for their parenting decisions. Its a HARD job and I choose to believe that we are ALL doing our very best to make the best decisions we can when it comes to raising our kids. I was just sharing that even had they wanted us to drop Ashley Kate off at the front doors that it wasn't likely to happen with this set of parents. Its just not what we do. Never have and probably never will. I didn't blame them one little bit for not being thrilled about a central line, a mic-key button and ostomy bag and even though they mentioned that they might be able to get a nurse to follow her around and have her trained to care for Ash I knew it wouldn't be necessary because I had already spent my time away from this child and it wasn't going to happen again. Those first 16 days of her life that we were not allowed to be by her side as she literally lay alone fighting to live as we waited for court orders and the whole bit were enough for me. So now I choose to spend each and every moment with Ash and LOVE that we are fortunate enough for me to do so.

We made decisions early on in our marriage about the whole stay at home mom thing. I can't express how wonderful it has been for our family and I would highly recommend it if you can figure it out. We never really had to choose if we could afford it or not, we just made sure that it was the priority. That's what works for us. I know it doesn't work for every family and I don't pass judgement on those that it doesn't work for. Like I said, we are all doing the best we can. How does it work financially? We make it work. Modest homes. Older cars. No credit cards(been there and done that whole thing and what a waste! With age comes wisdom. Ha, ha!).

Blake, Allie and Ashley have been my job. I'm a mom. My attention isn't divided. All I do each and every day of my life is concentrate on raising the children. I began home schooling early on in Blake's life. He was 2 years old when we started organized learning, and we stayed with it until the year Ashley was born. It was never my intention to teach the children in high school. My goal was to raise morally confident children who were responsible, respectful, and developed good character. Plain and simple. It was also never my intention to start them in school before they were pre teens. The way things worked out when Ash was born changed my plans. Had she been born healthy I'm sure I would have kept on teaching them until they were middle school age. Ash was born, she was very sick, we lived(she and I) in the NICU two hours from home for the first 6 months of her life. We brought her home with the knowledge that she was dying from liver failure and that a transplant would be the only option. That next fall we enrolled the children in their school and it has been such a blessing on our lives. A few weeks later we got "the call" and Ash and I moved away once again to battle for her life. You know the story from there. Its been up and down, back and forth. The time we have at home and together remains the most precious thing in our lives.

So on to the next topic. Moving. Why would we leave our little yellow house? Not because we want too, but because it is becoming necessary. Remember those hard "pills" I talk about having to swallow? We have some of the biggest ones looming on the horizon and the older and bigger Ashley Kate gets the closer they are becoming. Dave and I are working on swallowing the idea of accessibility for Ash. Currently our home is not equipped for what she will need as she gets older. It is becoming more and more difficult and we are going to have to modify our home to meet our daughters needs. Things like wheel chairs, ramps, accessible bathroom, etc. Our little yellow house is not big enough to accommodate these things. As hard as it is for us to admit it, not because we are ashamed but because it feels as though we are giving up, our daughter is handicapped. She is. She does not walk. She can not lift herself in and out of the bath tub. She is not able to get out of bed on her own. She does not dress herself, feed herself, or in anyway care for herself. I'm sure I don't have to tell you that huge, hot tears are streaming down my face and that my heart is broken each time I share these things.

We need space. Big open space and lots of it. Currently we shift. Therapy equipment from room to room and corner to corner depending on what we are currently using. We have resigned ourselves to the facts. Whatever we find will have to be redone. Floors are the main issue. Then we have bathrooms to tackle. Extra rooms for Ashley's therapy and home classes would be a huge bonus. Its not a small job. Finding something that can be redone to meet the needs and that has enough space isn't proving to be easy. Its going to be a long process and then finishing the job is also.

So there you have it. Hope I answered your questions. Its time to get Ash up and moving. Have a great day and God bless. Trish


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