Dear Clarity

I’m searching for clarity on how to proceed forward with Reece’s memorial (ok, clarity in my opinion on it, since Terry also gets a say in how we go forward).  I’ve struggled in trying to understand if we should be pouring our efforts into something on the medical side of Reece’s situation (MDS research, BMT-related patients, etc) or on the faith side of Reece’s life.  This isn’t to say it can’t be both, but we need to have a starting point and some sort of direction.  I have been waiting before exploring too many options on the medical side, as I want to meet with a couple of Reece’s BMT docs to get their opinions.  We have ideas on where we could possibly be impactful, but I don’t want to double up efforts with the hospital and I also don’t want to bite off more than I can chew in regard to what we want to take on.  So, we have been waiting to get Reece’s autopsy results back so we can discuss the medical options in going forward with a memorial.  We’re on hold for a couple of weeks.  The other side of the coin is the faith approach.  I’m not sure exactly how that would all look or where we would focus our efforts in that regard either.

I ran past one of the schools that Reece might have attended for Kindergarten this year.  Surprise–today was the first day of school!  This day crept up on us; we thought the first day of school for Minneapolis was next week.  It was odd to see all the kids getting dropped off.  This would have been a big day for our family–a Kodak moment.  Now it is passing by like any other day.  But it’s not any other day.  There is a hole that can’t be filled; it’s like having an empty stomach except it is heartache and there is nothing that can be done here on Earth to satisfy it.  It just is what it is.  I’m not going to make excuses for it and I’m not going to avoid it.  I’m sure there are other people out there today going through the same thing–missing out on the same thing.

Also during my run, I thought of and prayed for one of Reece’s BMT neighbors at Amplatz who is currently in the PICU fighting for his life.  He’s had a long road in BMT, in many ways very similarly to Reece.  He’s a fighter.  There’s the whole hospital side of things that we are still recovering from; I suspect it falls into the PTSD category, although I’m only putting that term out there for explanatory reasons, versus some sort of dramatic effect.  Every day was difficult; there are many traumatic and life-changing events that we experienced.  Even one day in the hospital was brutal.  Multiply that by however many days we were there.  I feel such compassion for the families going through that process.  It is still too close to our timing with Reece to be able to meaningfully put any time into supporting BMT efforts, but once we have a little distance, I know I will have a desire to stay connected to BMT families or Amplatz in some way, shape, or form.  Reece did live about a tenth of his life there.

I also prayed for the family of a preschooler who drowned yesterday.  I neither personally know his parents (friend of a family member), nor understand the pain of losing a child due to an accident.  Yet we are lumped into a similar category of grief over a child.  I immediately can relate to this family–knowing, loving, and losing a child.  It’s a genre of grief and loss, if you will; losing a child you knew, spoke with, laughed and cried with, played with, read to, hugged, kissed, and tucked into bed at night.  When we were making preparations for Reece’s funeral, the funeral director told us how rare it is these days to have a child die.  They don’t see it very often.  He works in the “business” and has for 40 years, so he should know.  It seems we have “cured” enough diseases and prevented enough accidents that the mortality rate for children is much lower–certainly a good thing. We keep getting fliers in the mail on infant loss which, for me, is hard to relate to.  I have no idea what it would be like to lose an infant.  Yes, there is a shared theme of grief and loss, so I guess I can relate on that level, but the circumstances are different.  What do I do to navigate child introductions, Reece’s birthday, picturing Reece in places he frequented, continuing relationships with friends that included Reece’s presence?  There seems to be a fair amount of resources out there on infant loss, as well as support for kids who have lost a parent.  But trying to find the group of people who have lost a child; they’re out there, but it isn’t an easy group to locate.  I need to find those people.  And, interestingly enough, we have had a few people reach out who have suffered the loss of a child.  Once they know your situation, they approach to some extent.  It has been helpful to know that we are not alone, even though we logically know we are not.

I guess answers to my questions may never come and, if they do, they will take time and living life through it.  There are no easy answers.  I know with all my heart it will be used for something and I’m antsy about it.  More immediately, I need to know where we should focus our efforts in memory of Reece.

Dear Clarity, I need you.  Sincerely, Terri.



Filed under Bone Marrow Transplant, This and That

3 responses to “Dear Clarity

  1. laura moore

    Perhaps Rebecca Chepokas at Westwood could be a good resource for you. She is the mother of Mitch, from the charity, Miracles of Mitch. The website is I would love to meet you. Could we plan for something after school starts on Sept 6th?

  2. Mary Jo Kannenberg (know your dad, Terri)

    Don’t know if you’re familiar with Charity Navigator, but they have a four-star MDS listing.

  3. Scott and Lorraine

    Good to read you are out getting some miles in Terri. Thinking of your family and sending well wishes.

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