Wednesday, May 29, 2013


Grief comes in waves.  Some days {or even moments} feel as though I'm wading in water, with small even ripples of water making their way towards and past me - silently though I'm constantly aware of their presence.  It's not painful.  I can make my way through these waters, even though I'd rather not be in them to begin with.  Suddenly, though, a larger wave will strike from out of the blue, nudging me not so gently off my somewhat solid footing.  I stumble and regain my composure and I continue on.  These waves strike fairly often, though I have no way of predicting how or when they will make their appearance.  They just come and I have to work a little harder to get through them.  Not quite so often, an even larger wave will crash into me, knocking me backwards - even off my feet.  If feels impossible to move past this wave.  It strikes unannounced and it stings.  It is sharp and painful and it brings with it a flood of memories and emotions.  I have no choice but to try to get back up and to try to carry on.

That is what life is like these days.  I don't know that I have huge swings in my emotions all the time.  Every now and then, though, one of those sharp waves will hit and it is just so hard to get past.  I would say that for the most part, however, it's more of a constant awareness of this great loss of ours that I am feeling.  I miss Peyton so much and it just hurts so much.  I'm getting by without too many huge breakdowns, which is good.  I never know what is going to trigger one of the bigger waves of emotion {even the medium waves}.  

It's odd.  I'm having a really difficult time with the thought of moving out of the month of May.  Peyton was still alive at the beginning of this month.  She only lived not even four full days this month, but she was alive as we started this month.  To move into a new month that she will never have experienced does something to me.  I'm not sure why.

I haven't been able to go through very much of Peyton's things.  Every now and then I'll look through a cupboard in the bathroom or in her closet.  But not much has been done.  A few little things, but not much overall.  It'll happen when the time is right.  And it's not right - not right now.

I can't believe that just a little over two months ago we had no idea we'd be where we are right now.  She was admitted to the hospital on March 26th.  Who knew then that she'd only have 40 more days left of her too-short life.  It's just so surreal that she is no longer here with us.  I don't know that I can ever get used to the four of us being only the three of us.

I'm sure many people wonder how I could have handled 40 days on one of those couches in Peyton's hospital room without winding up with a seriously messed up back or other issues.  Believe me when I say that I slept far better under those conditions for 40 days than I have been sleeping in the last 25 days since I've been home.  I am not sleeping well at all.  I've never really slept "well", but I'm really not sleeping well now.  Some days I'm tempted to turn on Peyton's oxygen concentrator just for the familiar sounds so "soothe" me to sleep.  It's too quiet now.  I did get a prescription for a low dose Ambien to help me sleep.  Yes, it helps me "relax" so I can get to sleep {sometimes}, but I don't stay asleep, and the quality and amount of sleep I get is not good.  Time to contact my doctor again.

Aside from the sleep issues, my body is revolting against me.  I've had back issues for years, but the stress of the past couple months - particularly the past few weeks - has earned me a few giant knots in my muscles.  My muscles feel like steel cables in some places.  No, I'm not that fit.  I'm just that stressed!  For some reason, though, in the past few days, all of that stress has come out through my neck, shoulder blades, shoulders, arms, hands, and fingers.  The burning pain through my arms has driven me to tears, it's so bad.  Simply lifting my arms can send me over the edge.  With some Tylenol, I can eventually get to a point where it's not as bad, but by evening, it's bad again.  I did have a long-overdue visit to my chiropractor this afternoon.  It helped a lot, but then everything was more sore from being worked on.  I'll go back again on Friday.  Hopefully I can get past this soon.  This is not fun.  Not fun at all.

This is life right now.  Yes there are some smiles and laughs here and there too.  It's not all tears and pain.  But it's a painful time right now.  I'm just so fortunate to have a loving and supportive husband and to be blessed with so many friends and family lifting us up, encouraging and supporting us during this time.  I am so grateful to have them in my life right now.

As always, I appreciate your continued prayers as we journey through this time of loss.

Monday, May 20, 2013

Living In the Moment

When I hear the phrase "living in the moment", my mind jumps to thoughts of living freely - in the moment - being carefree, living for the now.  Now, however, when I think of "living in the moment", it's literally living in this moment because this moment is all I can handle right now.  Right now.  Not a couple hours from now.  Not tomorrow.  Certainly not next week or next month.  Now.

Since Peyton passed away on May 4th, life has been a blur.  There was a flurry of activities surrounding taking care of what had to be taken care of and planning for her memorial service.  Most visitors left the following day.  We had a few more days before we were on our own as a family of three.  Three.  That number still doesn't sit right with me.

Ron was off work through this past weekend.  It made a huge difference to have him here.  Moira had gone back to school the week after the memorial service, so it was just the two of us for a little bit each day while she was at school.  We were able to take care of some things and just "be".

As the calm descended on our home, so did the stark realization that we are not four, but three in this house.  There is no home nurse here twelve hours each day.  It is so strange to be upstairs with no one at all downstairs in the bedroom which was Peyton's.  When we leave our house, we have to lock up because there's no one staying behind - no nurse; no Peyton.  When we get into our vehicle, there's no huge but comfy looking special needs car seat in the back, but plenty of space to seat a couple extra people if needed.  When we return home from being out, there's no nurse to say hello to and tell us how Peyton did while we were out - because there is no Peyton there.  Just a great empty feeling in our home and in my heart.

While we still had visitors here, I became hyper-sensitive about things.  I new I had developed a sense of what my limit would be each day.  There is a limit on things I can tolerate each day.  What can I tolerate?  Church is good.  Being with my family is good.  Spending some time with friends is good.  But there are things which I don't want to hear about or talk about.  There are situations I don't want to be in.  There is a limit.  And it changes.  I'm sure that might be a bit frustrating for others since I can't necessarily say from one day to the next what it's going to be!

Peyton would have been seven on the 15th.  Ron's birthday was the 17th, so friends of ours invited us to come over to their place for dinner, cake and just to celebrate both birthdays which I thought was very thoughtful and it meant so much to me that they would think to honor Peyton's birthday for us.

The past few days or so have gotten more difficult for me.  As the day to day "calm" sets in, so does the reality that this new life we are in is it.  Three of us.  The ache in my heart grows each day.  I miss Peyton so much.  I know she is fully healed and is rejoicing in Heaven with Jesus and with her family that has gone on before her and I would never want her back on this side of Heaven just knowing that she can walk, talk, run, see, hear, dance, and so on.  I would never want her back here if it meant giving that up to return to a life of illness, disability, pain, and so on.  I trust in God that He is taking wonderful care of my little girl, but I just miss her terribly.

As I go about my day and think of what all we had to do for her {nurses and/or myself}, it is amazing at the time that has suddenly been freed up.  I don't say that as if to suggest any time spent caring for her was a burden - I would do it all over again if I had to.  But there's these vast spaces of time in our day where there's just nothing.  No breathing treatments.  No play time.  No diaper changes.  No tube feeds.  Nothing.

And my calendar?  Well, it's about as bare as it's ever been.  There's still the odd previously scheduled appointment that makes an appearance and I look at it and think, well, I guess we won't be going there today.  But it's funny.  As big of a deal as it was to get Peyton ready to go to an appointment - even if it was by medical transport {ambulance} once - I miss it.  My life revolved around Peyton and her medical issues.  The vast majority of people I knew, outside of church friends and a couple non-church friends, were doctors and nurses.  I said to Ron today it's like someone threw up a restraining order and I'm just cut off now.  Even if I didn't see these people outside the walls of MUSC {although one of her doctors does attend our church}, they were still people I interacted with.   Maybe it's odd to say I miss all those doctors and nurses - but I do.  And the home nurses.  How could I not miss people who were with me twelve hours a day?!?!  {Note: if anyone reading this does fall into one of these categories...feel free to contact me - there's a few options over there on the right sidebar --->>>}

So, for now, as I go through each day, I find myself more sad more often.  I rejoice in her healing, but the loss is palpable.  I cry a lot.  I got 15 minutes of sleep last night.  Yes, you read that right.  Minutes.  I find that I must occupy my mind in some way or else my mind drifts quickly to thoughts of Peyton and how she was before the hospitalization; how she was during that hospitalization; and how she passed from this life.  If I try to sleep, my mind goes right there and I break down.  That's how I've been doing the last couple days.

I so appreciate the love and support we have received from everyone during this time.  It has helped tremendously.  It is incredible to see how Peyton impacted so many people in such a short life.  Please keep us in your prayers as we deal with the grief of our loss, each of us dealing with it in our own unique way.

Wednesday, May 15, 2013

Seven Years

Seven years ago this morning, we welcomed our precious Peyton Elisabeth into this world.  We did not know in that moment that our world was about to be changed in far greater ways than we could ever have imagined.  

In nearly seven years, Peyton taught us far more than we could have ever hoped to have taught her.  She taught us about life and the value of it.  She taught us about perseverance.  She taught us about priorities.  She taught us about the lengths to which we would be willing to go for another human being.  We thought we knew what love was before Peyton, but she taught us more about love than what we knew was possible.

For almost seven years, our family's "normal" life was so far from what most of society would call "normal", yet it was normal for us.  Yes, we struggled along the way.  Yes, there were hardships.  But there were also so many blessings and joys experienced because of who Peyton was.  Peyton's life may have been short, but it was not without value.  It was not without purpose.  I believe that her purpose extends beyond her earthly life.  I believe that this world is a better place for her being a part of it.

I imagine that Peyton is having the most amazing birthday party in Heaven today, along with her brother Jeffrey, her Granny, and all those who have gone before her.  I miss her terribly today, but she's celebrating with Jesus!

Happy birthday, sweet Peyton!!

1 Corinthians 13:13

New Living Translation (NLT)
13 Three things will last forever—faith, hope, and love—and the greatest of these is love.

Monday, May 13, 2013

A Great Void

It has been nine days since our precious Peyton went to be the the Lord.  I cannot help but rejoice for her that she is no longer sick, no longer in pain, and no longer suffering.  I cannot be sad for this sweet girl who is dancing, walking, running, talking, seeing, hearing, and doing so many things that she could never do here on earth.

But I weep.  I weep for the loss of my youngest daughter.  I mourn the loss of the little girl whose many needs filled my days.  It is strange being home after having spent 40 days at the hospital with her.  It was strange to feel the air outside, to sit in a car, and to enter my home without my daughter.

The past nine days have passed quickly.  May 4th seems like yesterday but it seems like an eternity has passed.  Out of town visitors have come and gone.  A visitation was held.  A memorial service took place.  We said our goodbyes to the earthly body that was Peyton.

We went to church as a family on Sunday, May 5th, a mere 27 hours after Peyton passed from this life.  We couldn't imagine a better place to be than with the church family who has supported us for so long.  We went to church on Sunday, May 12th, Mother's Day.  It was good to be among our church family but I felt the absence of Peyton in a profound way.

We picked up Peyton's urn this weekend.  Another event to add to the ever-growing list of things that make her loss so real.

We picked up her death certificates today, again making this even more real - and "final".  Just as Peyton had a lengthy list of health issues in life, her death was marked not by one cause but by several.  The only thing I know for sure is that her death did not come as a result of Ron and I making the decision to peel back all of the medical interventions that were sustaining her.  People have wondered what happened because she passed so quickly after that meeting we had with the doctors on Wednesday, May 1st.  The truth is, before we did a single thing, Peyton's health began to decline on its own.  By Thursday morning, before we removed any medications, Peyton had fluid building up on her lungs.  By Friday, after we'd removed the final supportive thing, we found out that Peyton had tested positive for stenotrophomonas pneumonia, which is not curable and was indicative of an end of life process.  Had we not made the decision to take a palliative care approach, Peyton would have passed away as it was.  Yes, things happened quickly.  After some amount of pain control was needed, she was finally comfortable and she did pass away peacefully.

The adrenaline that has kept me going since the 4th has been wearing off, particularly in the past day or two.  I find myself discovering that there are limits on how much I can do as it relates to the things like the disposal of all of the beautiful flowers, most of which are past their best now.  I find myself needing space and "alone" time.

My body aches.  My muscles scream out when Ron tries to rub my neck or back.  I feel like my body is held together by steel cables, not muscles and soft tissue.

Given where Peyton is now, it would be purely selfish to want her back here.  But I miss her so much it hurts.  I would love to hold her again without fear of hurting her poor broken little body.  I would love to hear her laugh, see her smile, and just have her back.

And so we journey through the early stages of our grief - differently, yet each of us grieving the loss of our daughter and sister.  We've got a long road ahead of us.  I know I, for one, am feeling a great void in my life.  I am not sure how to fill the hours that she once filled.  I am not sure what our "new normal" is supposed to look like for the three of us.

I know we'll be leaning on God now more than ever.  He will sustain us through the difficult days, weeks and months ahead.

Sunday, May 5, 2013

Visitation & Memorial Service

We have finalized the details for Peyton's visitation and memorial service.  You can view her obituary online and find all of the details here:

Please forward this information as you see fit.

Thank you so much for your support during this time.

Saturday, May 4, 2013


With deepest sadness, I am sharing that sweet Peyton went to be with Jesus this morning. She passed peacefully at 6:12 am. She is now playing with her big brother Jeffrey in the company of Jesus - running, walking, dancing, seeing, hearing...doing all the things she wasn't able to do here on earth.

Arrangements are pending at this time. I will share when we know the details.

Thursday, May 2, 2013

Hospital Life...Day 38

Today is Day 38.  If you missed yesterday's update, you can read it HERE.  If you haven't read it, you may wish to start there before continuing.

Through the night last night, Peyton's breathing sounded very "wet" or "junky".  More than her norm.  Her oxygen saturation also dropped into the low 70% area a couple times.  There were a few things which, on discussion with one of the members of Peyton's medical team, were felt to be signs of worsening pulmonary edema.

I don't know how well Peyton slept last night, but she really did not sleep at all today.  She was very restless and uncomfortable.  For a while now, she has had a constant motion of her left leg {the one that isn't broken}.  Yesterday it was her arms as well.  Today it was her body.  She wasn't crying, except during diaper changes, but she wasn't comfortable.  I just wanted her to be comfortable.  To be still.  It took a lot of effort to get her to a point where she was more comfortable.  Even now, hours later, that leg is till going.  She's not moving around as much as she was, but still not totally settled.  I would love for her to just sleep.

Moira stayed home from school today.  She is understandably upset about what is going on.  She and Ron came to the hospital around noon and spent several hours up here.  Moira was able to speak with one of the child life specialists here.  We are happy that the things she is expressing are all very normal.  We hate that she's going through this - we all hate to be going through this.  When I first saw Moira, she looked upset and came over, gave me a big hug and asked me why Peyton has to die.  I cannot answer that. It just kills me that my child is having to go through this.  Not long after that, though, she was playing a game on my laptop.  Every now and then a random question would surface, but she was fairly content to do her own thing most of the day.

We were blessed with some visitors from church today.  From prayer to song and music, to having one of our pastors visit, to having a couple from our small group here, it was all very much appreciated and much needed today.  We are very grateful to have such an incredibly supportive church family as we have no family here locally.

I don't know if I will write daily updates at this point.  I did want to let you know how Peyton is doing.  It seems things accelerated on their own before we had to "enact" anything from our conference we had yesterday.  Our primary goal now is for her comfort.  As always, and especially now, your prayers are much appreciated.  Please also include our families in your prayers as they will be starting their travels this way soon.  As I write this, I know my dad is leaving in the morning to head down from Canada.  Prayers for peace for our family are much appreciated.

Wednesday, May 1, 2013

Hospital Life...Day 37

Today is Day 37.  If you missed yesterday's post, you can read that HERE.

Today we had our family conference.  Ron and I attended a meeting with several from Peyton's medical team: a nurse practitioner {she has been working with us for the past few years who deals with pain management as well as supporting us by coordinating with the medical team when Peyton has been admitted}, one of Peyton's primary nurses from the unit, two of the residents from Peyton's current team, the attending from her team, one of the attendings who has been with Peyton once before on this admission and who is scheduled in the next week or so to be back on the rotation}, the first attending who Peyton had on this admission{who also happens to be someone who knows her quite well, having worked with her for the past few years}, one of the doctors from the PICU upstairs, and a nurse from hospice.

We're 37 days in to an admission which has no end in sight.  Peyton has had numerous issues.  We have been going around in circles, with new issues popping up and old ones resurfacing.  There is no easy way to say this, so I will just say that after much discussion between Ron and myself and over the past days with the medical team, we have reached a point in time where it is appropriate for us to shift our focus to palliative care for Peyton.  I cannot say what this means for her in terms of time.

As we transition into this next phase of care for Peyton and season of life for our family, we truly covet your prayers.  This has not been an easy place to come to and this has been a long and difficult journey this past month.  Moira is now aware of what is happening, so please pray especially for her.  I cannot imagine being 9 years old and going through this.

Thank you to all of the medical team here at MUSC who was with us in our meeting today.  While the decision was ours to make, you helped to bear the load as much as you could.  We appreciate your thoughtfulness and your words of comfort and reassurance.  We appreciate your time and willingness to be a part of this process with us.  We appreciate all that you have done for Peyton from a medical standpoint but we also appreciate you showing that it's not all about science and medicine - that there is a compassionate side to what you do {which we have felt all along}.  We appreciate that you are standing there crying with us through this pain.  Thank you for the honor and dignity you are affording Peyton during this time.