Six Months & A Remembrance Service

Today marks six months since our sweet Peyton passed away.  Six months seems absolutely incomprehensible.  It is surreal to think that so much time has passed.  I have said it before - no matter how much time has passed, it all at once seems like an eternity yet seems like it was just yesterday.

It is also very hard to believe that we are now in November and are charging full steam ahead into the holiday season.  I don't expect this to be an easy time for us.  For myself, this month I will celebrate my first birthday without Peyton.  For our family, we will celebrate Thanksgiving without her present with us and then Christmas next month.  Then it will be a new year.  That is so much more difficult to comprehend.  It has always been difficult for me to transition to a new month wherein it is a new month that Peyton has not been present with us.  I can't bear flipping that last calendar page and beginning a new year that she will not physically be a part of with us.

On November 1st, Ron and I attended a Service of Remembrance at St. Luke's Chapel at MUSC.  One of Peyton's home nurses attended with us.  I was honored that she attended with us as she was the last home nurse to work with her.  She moved out of town shortly after Peyton went into the hospital and wasn't here when she passed away.  She has since moved back and I am so grateful she could attend this with us.

The service was so touching.  It was as much for MUSC staff members as it was for the families grieving the loss of a child.  I have no idea when the other families suffered their losses, but my heart broke for them as it did for my own loss. The service opened with words from a Chaplain from MUSC's Pastoral Care group as well as from the Administrator of MUSC Children's Hospital.  Similar to Peyton's funeral service, there were so many comforting words spoken, yet so few that I could recall to memory right now.  The Administrator spoke to the medical staff, addressing the fact that this year has been a challenging year with some very difficult cases.  I believe I know one of the cases to which he was referring.  I know what it is like to be a grieving parent.  I do not know what it is like to be in the shoes of the medical staff who work with patients like Peyton.  I can honestly say that my heart breaks for them in the losses that they must endure in their profession.

A beautiful poem was read.  I have heard it before, but it is always touching and always brings tears to my eyes:

"We Remember Them"

By Jack Riemer and Sylvan D. Kamens | Poem

In the rising of the sun and in its going down, we remember them.
In the blowing of the wind and in the chill of winter, we remember them.

In the opening of the buds and in the rebirth of spring, we remember them.
In the blueness of the sky and in the warmth of summer, we remember them.

In the rustling of leaves and in the beauty of autumn, we remember them.
In the beginning of the year and when it ends, we remember them.

When we are weary and in need of strength, we remember them.
When we are lost and sick at heart, we remember them.

When we have joys we yearn to share, we remember them.
So long as we live, they too shall live, for they are now a part of us, as we remember them.

After this reading, the Chaplain spoke again.  This was followed by the reading of names of children who have passed away.  As the names were read, candles were lit in the child's honor.

Peyton's name was the last name read in the first of three groups.  Of the three individuals who read the names, only one had a history with Peyton.  It was one of the pediatric hospitalists who worked so hard to figure things out for her and for us.  It was this doctor whose service Peyton was on for the first eleven of those forty days in the hospital.  It was this doctor with whom I first discussed the matter of "if" Peyton would be going home - not "when".  It meant a great deal to have this connection at the service.

I do not know what period of time all of those names covered.  But there were far too many children's names on that list.  One name would be too many.  There were eighty names read.  Eighty candles lit.  Eighty children for whom many hearts have been broken.

There was a slide presentation incorporating pictures some family members submitted in advance of the service.  Tears streamed down my face as I saw the faces that accompanied some of the names read earlier.  What was shocking to me was that not all of these children were little children.  Yes, some were infants.  Some were young like Peyton, who was 11 days short of her 7th birthday.  But some were older, wearing a cap and gown in their photo.  Some children appeared to have some sort of medical issue, having obvious scars or special need.  Others looked completely healthy and vibrant in their photos.  I wondered what their stories were.

The service was beautiful.  It did bring a sense of peace to me on some level.  I know that it did a lot of good for me to see people again.  I saw several doctors and nurses who worked with Peyton as well as a respiratory therapist and one of the people with hospice.  It was really nice to catch up with some of them at the reception that followed.  For me, one of the losses represented in Peyton's passing is the loss of the connections with the medical community she was a part of.  Once she passed, there were no more appointments.  No more trips to the ER.  No more hospitalizations.  Imagine having a kind of relationship with several people and then having all ties immediately severed.  Not because you don't want to see them, but because there is no need.  Peyton was the reason I saw them.  It is very strange.  I miss these people.  So for me, it was beneficial to be able to see them again.  I had not seen one of the doctors since the family meeting we had the Wednesday before Peyton passed in order to discuss how we would proceed.  A meeting I would not wish on anyone.  One of the nurses was one of the last people I said goodbye to before walking off the unit after saying our goodbyes to Peyton the morning she passed.  One doctor I hadn't seen since a day or so prior to her passing, when we were trying to tie up loose ends with Children's Hospital in Boston with regard to eventual autopsy issues and the genetic research to be done after her death.  There is a conversation I hope no one ever has to have {not to mention the paperwork needing to be signed}!  I suppose it's like these are the last memories I have of my involvement with Peyton's doctors and nurses.  While Peyton is now gone, it is nice to have a more positive encounter to replace those final memories - if you can call a remembrance service a "positive" memory.  It is.  It's just the circumstances.

Perhaps the timing of the Service of Remembrance was good for us.  It fell just 3 days prior to Peyton's six month anniversary.  Six months seems pretty significant - more so than three or four months felt.  I am grateful to MUSC Children's Hospital for this event honoring not just Peyton, but the many other children who have passed.  The care we received while we were in their care was beyond what I could have expected.  That they continue to care for families like ours means so much.  I am touched once again by the level of care of the medical staff at MUSC Children's Hospital and am certain that Peyton could not have been in better hands.

She Could Break

This is our strange new reality.  Broken bones.  We've been home with Peyton since Thursday night.  It is strange.

Peyton lays in bed.  She receives all of her breathing treatments in bed.  All of her meds are given in bed.  Everything - in bed.  It's a delicate little dance we do every time she needs a diaper change or shifted or otherwise moved.

She could break.

It's a few fear we have, though the reality is that this has been the case for at least a short time unknown to us.  How do we touch her?  Should we touch her?  Will one false move injure another limb?  Will her chest physical therapy {CPT} break her ribs?

We look at her.  We help her.  We do what needs to be done.  But there's an underlying fear of breaking her little body in some way.

It's a very strange reality.  How many parents have this fear - and have it be a truly legitimate one?

Monday will be interesting.  Her wheelchair is going to be adjusted.  In the process, Peyton will have to be transferred from crib to chair and back again.  Perhaps the process will need to be repeated.  It will cause her some level of pain to do this.  I don't want to hurt her.  Moving her means there's a greater risk of injury.

She can't stay lying in bed.  That's not good for her either.

I just want to protect her and keep her safe.

Being Realistic

I think there comes a point in time when you have to be truly completely realistic about a situation.  I believe Ron and I have been doing our best with this for nearly 7 years now.  We've tried to be as open as we needed to be about the specific things that have been going on in Peyton's life.  We've never glossed over anything.  It shouldn't really come as a surprise that Peyton is a very sick child.

I feel like we're moving through phases.  Special needs.  Medically fragile.  Now this.  What's happening now feels like a new phase.  The concept of "special needs" seems not to capture the essence of what we are dealing with at all any more.  "Medically fragile" seems more accurate, but it feels like more than that now.

We're trying to adjust to a new reality.  When Peyton was in the hospital last October, she was in for 17 days and the doctors came up with no answers for why she was so sick.  There was clearly something going on, but every test under the sun revealed nothing.  Then she was in the hospital last week with respiratory issues.  Again, she did not test positive for anything.  While you might think that's good, it's really not.

While they tend not to talk in terms of "DNR" orders, I cannot tell you how many times over the past couple of weeks I have answered questions related to what we'd commonly think of as DNR orders.  For my 6 year old.  This is a topic we broached cautiously a few years ago during a particularly bad time in Peyton's life, when her illness nearly required her to be on a ventilator during one particular hospital stay.  The concept of making decisions for Peyton's life is not new to us.  It started back then and, while we haven't had to discuss it much in the hospital until now, it's been on our minds since then.  Yet it's back in the hospital realm again.  One doctor after another asking the question, needing to be sure that the information they have is still what we want.

I feel sometimes like we're living in some other dimension from everyone else we know.  I mean, who else {besides us} has a plan for their child "just in case"??  What other mom out there refuses to take a 24 hour getaway because of the horrendous guilt that would overtake her if something happened while she was away?  And do you have any idea how much this family desperately needs that type of respite??  There are no vacations to look forward to on our horizon.  Who else {besides us} lives with the knowledge that something very likely could happen to their child at any time.  Yes, I think all parents have fears that something could happen to their child.  I'm talking about a very real fear that comes from the knowledge that something actually could happen because your child is for all intents and purposes terminally ill.  Not with cancer.  Not with some other life-threatening disease with a name.  But with a condition that, while undiagnosed and un-named, threatens to take her from us before we want.

I am not being paranoid or pessimistic.  I am being realistic.  Our new normal is just about more than we can bear.  But we will and we do because she is our child and this is our life and I cannot imagine doing anything other than what we are doing for her.  I wouldn't change what we are going through because it's not for me to change.  God has a plan.  He's had this plan all along.  No matter how He chooses to heal her - whether it is through some miracle which will heal her hear on earth or it's through His perfect healing which will last for eternity - that is His plan to carry out.  Unfortunately, we don't get to know what that plan is.  We find out along the way the direction things will take in each moment, but we don't know what lies ahead.

All we can do is pray.  And ask for prayers.  And more prayers.  And start begging everyone around the world to pray for her because I feel like that's just about the only thing that we can do besides medically manage her issues.  I pray specifically for Peyton and her healing - however that has to happen.  I also pray that Ron and I will be given some sort of supernatural strength to deal with the present and whatever lies ahead.  I pray that God will give us strength to bear all that comes our way and gives us whatever support we need as we journey through the days, weeks, and months ahead.  

We don't have a "timeframe", in case you're wondering.  It's all in God's timing.  

That's the only thing I know.