Preparing for the Worst

…and hoping for the best. In my heart I know those two things could be the same thing.

I’m having a hard time wrapping my brain around the idea that in about three months time I could be in a hospital heart transplant ward until…I suppose you could call that the worst case scenario, but is it?

In simple terms there are two transplant lists (in reality there are more but for this example we’ll talk about the two that matter to me,) transplant List 1 and List 2. List 1 is broken into two parts, List 1A and List 1B, and then there is List 2. List 2 are for those who will need a heart in the future but can still get around, maybe still work, and are generally stable, but still have a bad heart. They’ll need a heart some day, but I don’t have that kind of time.

The List 1 folks are a little more critical. The 1Bs typically need some kind of support in the form of IV Inotropes that helps their heart function better while they wait and they can go home and wait for the call. The 1As are the most critical and they are not only on IV Inotropes but can be on a variety of forms of life support while they are waiting and they must stay in the hospital until…

Until what? Until they receive a heart or until the doctors simply can’t keep them alive any longer.

We know what list I need to be on to potentially have the shortest wait time, the 1A. And even then I could be looking at a year or more. I’m in the most common blood group, O, and I’m of small stature, so my donor has to be small as well. The type O blood group waits the longest then factor in my size and I have two hurdles to get over before the right heart will be made available to me. Not to mention I’ll be on the longest list in the country with the smallest donor pool.

What I’m struggling with and having a hard time wrapping my brain around aren’t the lists and if or when a transplant might happen, it’s my family and what I could potentially miss if the 1A List is in my future.

My youngest son’s high school graduation. A milestone that for many years early on in his life we thought may not happen. Him going to college in the Fall of 2017, again a milestone that we weren’t sure would be a real possibility for him. He has severe Type 2 ADHD, falls in the Autism Spectrum, and borders on OCD. He was educated under IEP until the eighth grade but entered high school unassisted and med free. He’s done amazing! An honors student with a dream of being a teacher someday. I’m still in awe of how far my little boy, who didn’t speak until he was nearly 5 years old, has come so far.

My oldest son, the lone wolf, who I honestly never thought would be the type to settle down and get married is in fact getting married in August 2017 to the sweetest young lady. Again something I thought I’d never see, now it’s happening, and the timing for all of it couldn’t feel worse.

My little sister could get married while I’m “away” and I don’t want to miss that either, but life moves forward and I don’t want anyone to put their life on hold, most certainly my family, because I’m sick. So there is a real possibility I may not be here when the youngest walks across the stage and gets his high school diploma, and I may not be here to help him move into the Freshman dorm in college. I may not be here to watch my future daughter in-law walk down the aisle and my son pledge his life to her. I may not be here to see my sister walk down the aisle and pledge her life to the amazing young man she loves either. I may be watching it all via Skype sitting in a hospital bed over 900 miles away.

I love my family and want to be here for all of the important milestones in their lives, but I know that in missing a few now may mean I gain so much more in the future.

I pray that God’s plan for me is to see the college graduations, the new babies born into the family, the future marriages of nieces and nephews, the purchase of first homes, and so much more. I don’t want to believe that He’s challenged me to endure all that I have and continue to only to have me miss all those things in the future. Maybe I’m wrong, maybe it is all preparation for something bigger than I can imagine, maybe it’s selfish of me to want to continue on this earth as long as I can so I can be a part of all those things I covet so much.

Time will tell…

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