April 11, 2019

I like to plan, I like to be prepared.  I am that person who likes to have the Christmas presents bought and wrapped before the beginning of December.  I liked the feeling of having the clothes organized, the diapers and supplies bought and all ready well in advance of my new expectant babies.  Knowing this about myself it doesn't surprise me that I have been feeling lately that it is time to get things planned, ready if you will, for Heston's passing.  I don't like to scramble at the last minute, so if there are things I can do, decide or have ready ahead of time, I want to.

But this sort of planning hurts- it is so hard.  At times it just feels weird and at times just the thought of it makes it hard to breathe.  Sitting in the funeral office, surrounded by urns and casket samples felt so weird and almost like I was in some sort of bizarre dream.  Filling out forms with some of the information needed for a death certificate I found myself almost going numb.  I tried to tell myself it's just another form- like filling out a kindergarten registration.  But I don't do a very good job of lying to myself.  I know what it is for, but I also know that it is easier for me to do it now with a clear head, then when in the depths of grief, so I forge ahead.

And that is how I found myself in the underwear aisle.  I have 5 boys so it isn't like I have never been in this aisle before.  It's just that I had never been in this aisle for Heston and never to buy a pair for this reason.  You see, one of the things on the list of what I could have "ready" ahead of time is an outfit for the burial.  Seems simple enough.  Except that it occurred to me that I needed to decide what to do about the underwear situation.  I knew I didn't want a diaper, but that was all we have for Heston.  I didn't want no underwear- yes I know it doesn't really matter and there is no right or wrong in this situation, but for me, I decided he needed to have underwear.  And I knew I didn't want to find some hand me down pair around the house.  They would be the only ones I would ever buy for him, so I wanted them to be new.

I went to another store a few days earlier, went to the aisle and started looking.  No I didn't need a 2-pack or even a 4-pack.  I didn't want them to look flashy with super heroes across them.  I didn't see what I wanted and just started feeling overwhelmed so I left.  I told myself that I didn't need to buy them now, I could just buy them when the time comes.  But then I went home and thought some more.  I realized that it would be so much harder to buy them later.  I pictured myself wailing, sitting on the floor in the boys underwear aisle, not having the strength to make that purchase, too overcome with the grief of losing my boy.

And that is where I find myself lately.  Making tough decisions and minor decisions that feel gut wrenching.  I find myself wanting to withdraw from sharing lately, fearful that people won't understand.  Afraid that some might see it as too soon to prepare for such things.  But that is who I am, and for whatever reason, this is the time that feels right to do it.  And by right, I don't mean good- there is a difference.  It feels like we are supposed to get some of these things ready, even if it is hard.

It is hard to explain, but we have been grieving Heston for years now.  We have already grieved that he will not grow up, graduate, marry, have kids.  In some ways it feels like we are passed the sting of that.  But I know that all too soon we will be grieving the loss of his physical presence with us, and everything in me tells me that I can't be ready for it.  I am trying hard to lessen the responsibility of decisions I will need to face at the time, but no matter how much I read, how much I want to prepare, I know when it comes right down to it, there is nothing I can do.  I feel like I will be pushed off a cliff at any moment, have no way to stop it, and no way of knowing when it will happen.  And not only will I be pushed off, but my whole family with it.  And I will be left broken, in a state of need, all while trying to help my broken husband and children around me.  The truth is, it scares me.  I feel like crying "God I have already gotten through seemingly so much, I don't have the strength left for this.  I don't want to do it.  I can't do it God."

I have talked to a couple of Sanfilippo parents on the phone lately, both of which have lost two children to the disease.  Hearing their advice, their stories and suggestions have been exactly what I have been needing.  And most of all, watching them walk through grief gives me courage.  God has given them strength and met them at the bottom of the cliff, and that helps give me hope.

So that is where I am- in this state of waiting, wondering, dreading.  I mix that in with 6 year old swimming lessons, college interviews, and all that goes with living life in our home- the completely not typical mixed in with the normal.  My thoughts seem scattered, my mind pulled in a million directions.  And then I look into my precious Heston's beautiful eyes and my heart is broken and filled to overflowing all in the same moment.  I tell myself, he is still here, the day is not today, so keep caring, keep holding, and keep loving.  Planning and preparing might ease my mind for a time, but loving fills my soul.