Ashley's Story

She will leave fingerprints all over your heart


A little Q and A

So many of you have asked me questions lately and I have yet to take the time to answer them. So this morning I have a few minutes and I thought I would try and answer the most commonly asked questions. In all honesty some of the questions that have been asked have not been answered because I have no idea how to answer them. When it comes to parenting questions and the like I feel really uncomfortable giving advice in that area. Each and every family is unique with its own unique circumstances and made up of unique individuals. What works for us may not work for you and it just feels kind of awkward trying to tell someone else how to raise their kids. From time to time I may share some of our personal experiences as I journal, but I hope that is not taken in the wrong way. I learned early on from one of our pastors to not criticize other people's children or how they raise them because you never know what your own are going to pull. Wise advice that Dave and I stick closely to. So here is my attempt to answer some of the easier question that have been asked lately.

1. The camera I use to take our photographs is the Digital Canon Rebel EOS. We bought it used on ebay from a photographer who had upgraded. It was an excellent buy and we have been very happy with it. Before this we used the exact same model only not digital. I use the Picasso program(which can be down loaded for free. just google it) to put soft focus or to crop our photos. Its so easy.

2. Yes, the majority of Ashley Kate's clothes are from Gymboree. For two reasons(not because I am an addict). Mainly for her comfort. Gymboree carries a huge line of stretchy, soft, comfortable clothes that can be mixed and matched in numerous ways causing me not to have to buy too many pieces to make up several outfits. Because of the location of Ashley's ileostomy and her g-j tube wearing any type of stiff fabric like denim or even some forms of cotton clothing very uncomfortable for her. She wears absolutely no waistbands that require buttoning, snapping or zipping. Since Ash doesn't stand and spends the majority of her time sitting a waistband can become extremely painful in a short period of time. This is my main reason for buying Gymboree. The second reason is Gymbucks. Its hard for me to pass up free money and when you receive Gymbucks, shop their sales racks and then hit the additional 25%off days its almost like getting her clothes for free. I love it! With Gymboree I know I'm getting great quality, fair prices, and cute looks for the gherkin.

3. No, I have never posted photos of our little yellow house. I'm not sure why I haven't. I have just never felt the need to. I don't mind showing you, I just haven't done it. The house is not "magical" as several of you have indicated. What is "magical" is what goes on inside of it. The people who live here and the way we live is as close to "magical" as I can make it. Not really "magical" just blessed. I have been accused of living a "Beaver Cleaver" life and that comment made me giggle. Life in this home is NOT perfect. It is normal. We have good times and bad, but we choose to concentrate on the good and thats what makes it so special. When you watch one of your children stare death in the face it changes your perspective on whats important. We only have a short time with these children and Dave and I intend on making it count. If we could hang out, vacation with, explore with, learn with, go to dinner with, or experience life with anyone in the world it would be Blake, Allie, and Ashley. The house itself is 60 years old with cracks in the walls, old wooden floors(which I happen to adore because I can hear the children running across them), not enough space, unplanted gardens(because I am waiting on the painter to finish the outside of the house rather than having the flowers trampled), no grass in the backyard(because we think playing basketball, kicking soccer balls, hitting baseballs, swinging, playing hide and seek, and jumping on the trampoline is far more important than "good" grass. We have our retirement to work on the grass once the kids are grown and no longer need the yard to play in), and faded siding. Put all of that together and its not that impressive, but it is LOVED and we are grateful for it and all that it represents in our lives. So once all the gardens are in, the girls furniture returns to their room, the painter leaves and I have the time I will happily post some pics for you guys.

4. Ashley's Amtryke is awesome, and it would be my hope that every single one of you with a special needs child would receive one. You can't buy them in stores. They are given as a gift to families who have children with a need for mobility or who have disabilities that could benefit from the therapy it provides. The pedals and the handles move together in a motion that works both the upper and lower body. For children like Ash who currently can't pedal themselves with either her hands or her feet there is and extension that allows us to push her along as we strap on her hands and feet. The beauty of the Amtryke is that it provides a normal activity for our children. What kid doesn't want to own and ride a bike? At the same time it is a wonderful physical therapy tool. I would encourage you to contact your local AMBUCS group and if you don't have one then let Dave and I know and we will do our best to get your child an Amtryke too.

5. We have been asked if Ashley's health will always be this fragile. The truth? yes. That is not an answer given out of a lack of faith in what God can do. It is just acknowledging that God created her the way that she is and that she happened to have a need for new organs. Organs that were not designed for her body, but for anothers. Because of this fact she will ALWAYS be on an immunosuppressant regime which will make her immune system weak in order for it not to attack the grafted organs. Can she continue to grow up and live a "normal"life? It is our hope, our prayer, and our desire that she achieve a relative state of "health" allowing her to do just that. Our hope is that Ash will have the same opportunities as our other children and we are determined to provide as many of them for her as is possible. Today? she looks great and she has 2 eyes showing! Her swelling has gotten better over the weekend and we are feeling encouraged. She is happy and silly and as ornery as ever and we pray it continues.

6. Does Ashley go anywhere? Yes. I don't take Ashley around large groups of people in doors anywhere. She has never been to Walmart, Target, the grocery store, or anything like that. We are very careful with where we take her and we try not to expose her to large germ pools. She does go outside. Anything that we are doing outdoors, or anywhere that we travel where we will be spending the majority of the time outside she goes with us, and she love it! We are SO blessed to have my mom and Dave's mom here in town with us. They are both available to sit with Ash if I need to run to the grocery store or to Target or to run errands around town. Without their help Ash would probably become sick more often because she would have to run with me to do the "necessary" things that moms and wives have to take care of. They have done a fabulous job of learning things like ostomy bag replacements, making feedings, pushing meds, and emergency care. I honestly don't know how we would manage without them.

7. The next questions are ones that I am constantly asked and have answered in detail many times before, but I don't mind. I won't go into detail again, but for those of you who are new to our journal or missed the answer then I will repeat the short version. Ash does not speak(she once did and the sound of her voice is truly the sweetest sound you have ever heard. Thankfully we have it on video.) , she does not eat (but we believe they both go hand in hand and once she acquires on of them the other will soon follow), she does not crawl, creep, pull up or walk. Yet. We believe she will some day.

8. What type of doctor is Dave? He is a chiropractor. We have been in practice here in Longview for 10 years and we are so blessed! He loves what he does. Our practice is centered on natural health care, healthy living, and Jesus. Its a great place to work, to visit, to be a part of. God has blessed us with some of the most amazing families who are like minded in their approach to life. If you are a part of our practice you become a part of our family. Dave loves his patients. He prays for them. He serves them. He gives them the tools to improve their daily lives. He leaves the house smiling, happy to go to work, and returns the same way. Smiling and happy to have had the opportunity to serve. Some day I would love to share the many things we now see that God had in place over the years through Dave's profession that have been vital in taking care of Ashley Kate and allowing us to be her parents. God is just good like that. He always has a plan.

I hope this wasn't too boring, but that it addressed some of the most commonly asked questions. If you stuck with me this far then I want to wish you a blessed day. Hope it goes well for you. Take care. Trish


Post a Comment

Subscribe to Post Comments [Atom]

<< Home