Embracing Ashley

The days and weeks following the diagnosis were cursed with uncertainties. Since the doctor provided no information, we did our best to learn as much as we could on our own. At times it was as if we were dreaming, just waiting to wake up so everything could be fine again. Could this really be happening? We were perplexed as to what this meant for our daughter and our family. It wasn’t until sometime later when we began to realize that being given a diagnosis is essentially nothing more than putting a name to it. We needed to go to a deeper level. We had to figure out what we needed to do for our daughter. In the beginning our education consisted of several appointments to see various specialists and rule out or examine parts of the body commonly affected by RTS. That alone was an exhausting process!

We considered withholding the information from our family, in hopes that the diagnosis was incorrect. We really struggled with how to relay this heart-shattering news to our families and friends. Initially, we went back and forth, wondering if we should minimize things to protect ourselves and our daughter. Finally we determined that being completely honest was best, although I was very concerned over the possibilities of being "judged" by others. But that fear was completely unrealistic! You never really think about the depth of this protective feeling until it happens to you. We have tremendous love and devotion for our daughter who is, always has been, and always will be "perfect" in our eyes. It was only natural for us to want to protect her. When we did begin to speak of our news, there was such a sense of reality, it scared me at first, because it made it real when I wasn’t ready to believe it. Being torn between knowing the truth and denying it was a big obstacle!

The Gifts...

The gifts I have received as a parent have made me whole. My daughter has provided me with a heightened sense of awareness of others. This carries over in every area of my life, and it’s a huge gift! I’m sensitive to others’ outward challenges, as well as the ones that cannot be seen. I have much more compassion for others.

I have developed a simpler view of life. The four main ethics I try to live by are Love, Happiness, Forgiveness, and Hope. Though simple, these four principles can result in personal fulfillment.

In our society a hierarchy exists: everyone is classified by something, and along with those classifications come certain judgments, etc. I believe that each and every person matters, regardless of age, race, religion, gender, or disabilities. Many of my core beliefs come from my Christian background, so I believe that each individual matters and that we should strive to treat others as we would want to be treated. You never know what the future may hold and the circumstances you may face. I’m especially interested in the equal treatment of people with disabilities. It seems that there is a level of dignity that is lost for some of these individuals, and in my mind, this is not acceptable! Every person deserves equal treatment! I’ve always felt this way, but now that I’m directly affected, I’m even more aware of this.

I have encountered many well-meaning people who have unintentionally made comments to me about my daughter that brought me such pain. For instance, one woman very genuinely told me that she knows someone who also has a child who is "NOT NORMAL," and the parents have been rewarded. The woman had no ill intentions, but it was incredibly painful just the same, like a knife in the abdomen. At first I thought maybe I was a little too sensitive. But then I realized that I wasn’t and I had every right to my feelings. The fact of the matter is, that oftentimes people don’t know what to say, and sometimes what they do say just plain hurts. I have actually experienced physical pain on several occasions due to such comments. I have felt I was about to explode from the pain. Even when I know the comments come from pure intentions, it still hurts. The common clichés of "You will be rewarded" or "We are never given what we can’t handle" are often Band-Aid sayings, and I can’t count the number of times such comments have been said to me. This usually helps the person on the delivering end feel better. I bring these things up just to provide some insight into my personal experiences. I really feel that I have grown from enduring some of these painful moments. I do believe that many people genuinely want to help.

The real journey begins when the parents are in a place where they can appreciate each gift and continue to grow by their child’s presence. This usually begins to emerge as the grief process is under control. The "gifts" I have obtained from my daughter are not ones that can be bought or replicated. Peace, Purity, Awareness, Hope, Compassion, Sensitivity, and Advocacy are just some of the gifts I have received. They were given freely, meant to embrace my being. My life will never be the same; there is a new level of peace that exists within me. I have a sense of knowing that everything will be all right. Ashley Kate has given me purity. Her pure heart demonstrates the enormous happiness and love we all are capable of. She has made me more aware of others, so that I have much more compassion and sensitivity for others. The hope I embrace will never fade, and no one can ever take this away. I have gained a high degree of compassion and sensitivity from my daughter’s existence. I was given a desire to want to make a difference, to reach out to other families, to share my experiences, to be an advocate for all persons who are faced with challenges.

I can’t begin to articulate the size of these gifts. They extend way beyond a comprehendible distance and are so real. I’m very fortunate to be able to examine these gifts and appreciate the great blessings I have received. I strongly believe that these gifts are the foundation of being truly fulfilled. Please don’t assume that I never experience hardships, etc., because this is not the case. Along with typical struggles, I experience the occasional hair-raising frustrations of parenthood. There have even been times when I felt like I wanted to run away or hide. The truth of the matter is that the strength that I have obtained from these gifts always pulls me through. As a result, my attitude has gradually changed, and my character has strengthened. I take great comfort in knowing that with the right attitude hard days will get easier, and sad experiences will pass. It’s a good feeling to know that no one can ever take away my precious gifts.

The impact of the gifts my daughter has brought will be life-long. Like a newly planted tree, the branches and roots will continue to strengthen and grow.