Today is a day that I believe will forever live in my memory; today we received word that I’ve been accepted for Living Related Donation to my son. I have been holding onto this “hope” as well as “fear” for so many years now; it comes with a sense of relief knowing I’m 100% approved for this operation in the near future and on the flip side of course a bit of pressure and uncertainty. I want what is best for Dylan and I hope giving a piece of me works out for him in the long run. As many know, organ donation is not a “Guarantee”. Its not a stamp that says all will go smoothly, that nothing will go wrong, and/or that things will work out for the better. The only guarantee in this process is that Dylan must undergo these steps, that if there is no drastic medical intervention him and others in his same predicament only have one for sure outcome. My mind simply cannot go down that path, I don’t accept those odds, I don’t know what would happen if this didn’t work out, my mind is only fixated on the process of what I need to do in order to give him the best case scenario for his future at this moment in time.
“HOPE” is the belief in a positive outcome related to events and circumstances in one's life. Not to be confused with positive thinking, which refers to a therapeutic or systematic process.
“FEAR” is a distressing emotion aroused by a perceived threat. It is a basic survival mechanism occurring in response to a specific stimulus, such as pain or threat of danger.
I know one will have read this far and think, “Why is he complaining, I thought all he wanted was to be a donor and now he is and isn’t happy with that?”
My response is: that’s so far from what the those terms of Hope/Fear are and that me feeling both is very real and very much warranted on my end (so I think). I like anyone else just want what is best for their family. I like everyone else am only human and going through my motions the best I know how. Having now passed the initial 50/50 split between Hope/Fear phases; I feel it’s very normal that the balance is shifting…a bit less hope and more fear now. Fear of the unknown, fear of “what if’s”, fear of how real everything just now became and on a totally different level. I don’t believe this makes me a weak minded person, I think that it’s imperative that I continue to fight the fight, that I continue to push my mind on a path that I have no reference to reflect back on (which makes it harder), that I do what is proper and work through my emotions as there is no right or wrong.
Fears I have: What if my liver doesn’t work out? What if he has to undergo this procedure in the near future b/c things don’t go as we “hope” them to go? What if he doesn’t do as well as we “hope” he will? The other real fear is how does one prepare for this and even more so how does one explain this to there kid?
When Dylan was having his endoscopies he was out of his mind scared (and rightfully so), I have never cried so much in my own life as when I watched and reflected back on how scared he was when they give him the versed, as he knows what’s to come thereafter…even though it alters your memory and he will likely forget most of it. The whole thing just down right sucks, I wish I could take all this away from him and trade spots with him. NO kid should have to go through what he goes through.
As I mentioned to a family member the other day:
“All to often we forget how powerful a simple gesture or giving 5 mins of our time can be. I thank you for taking that time as I know everyone’s lives are busy and we all have our own issues to deal with in life.
Thanks for keeping up to date on Dylan. In my younger years I never would of even paid any notice to folks talking about praying or keeping Dylan in there thoughts, through all this faith has for sure played a role. Faith in our loved ones, as well as looking towards another power, being, or whatever works for that person is important...I'm not a religious person but I do believe whatever you believe in and prayers to can help, as it for sure can't hurt any.”
Although it could always be better or worse , that’s not our life…our life is the present and what’s right in front of us. The Hope is all goes well, the fear is that we lose our hope. We need every ounce of support we can get and just knowing that folks care for us and are willing to help our family is a real blessing. As stated above, thank you to all our family/friends and perfect strangers for your support…it does help us.