Eight Weeks

Saturday marked eight weeks since Peyton passed.  It doesn't sound like a long time.  The number of weeks that has passed is still in the single digits after all.  Yet it seems so long ago.  I feel like our family has been uprooted and thrown to the ground with the expectation that somehow our roots will find their way back into the soil to allow us to flourish again as a new family of three instead of four.

The problem is that there is no timeframe on how long this process should be.  In fact, some of us may find themselves becoming rooted before others.  I wouldn't say that's happening yet.  Although, I would say that Moira appears to be closer to it than either Ron or myself.  I feel like we are just supposed to know how to do this on our own.  I'm sure we will figure it out in time.  It will require lots of time.

It's so surreal having come through a nearly seven year season of busyness - of caregiving 24/7 - to be thrown suddenly into a season of grief and quiet.  I have felt, at times, like I'm supposed to be searching for a cause.  The truth is that that "cause" needs to be "me" right now.  "Us".  It's a time for healing.  I'm not used to stopping to take care of "me".  It doesn't feel right.  However, the reality is that I have been neglecting "me" for a while.  In the past few weeks, I've been to the chiropractor several times.  I've been to the dentist - and have a few more of those appointments lined up.  I have seen a sleep specialist and even had a sleep study.  I have a couple other doctor appointments lined up.  Aside from the inability to sleep well or get enough sleep or even feel remotely close to being rested, I am ok.  I'm just trying to take care of myself now.

I feel that, for the most part, I have been doing alright.  However, the past week has been really rough for me.  I can't explain how or when emotions will come crashing down on me like a wave.  They just do.  Those waves have been bigger and more frequent lately.  I feel sometimes like I need to apologize for how I'm feeling...but I shouldn't have to.

I have moments where I have to keep busy.  If I don't, my mind goes in to overdrive and I can't stop seeing certain memories.  If I keep busy, it puts those off.  For a time.  I have moments where I have no energy for anything.  I have moments which are relatively "normal".  I think one of the hardest parts of the grief process is not knowing moment to moment what's next...how I'm supposed to feel in certain situations or in certain moments.

We also have moments, as a family, where we are doing things together.  We've had more interaction with friends and neighbors than we have had in a while.  And this is good.  It helps.  Granted, there are times when I don't feel up for doing things, and that is ok too.  I hope it isn't taken personally.  There are just times when I need space.

I took a rather large step yesterday in that I began working in Peyton's room, starting with her closet.  Friends, let me tell you something.  It is one thing to clean out your child's room in an effort to organize, clean and make things look better.  It is quite another to pull clothes off their hangers, box things up, and "organize" because your child is gone and is never coming back.  I will just leave it at that.

As for today and the coming days, I am just trusting in God to lead me through this time.  I know He will and I know that there are good things happening and that they will continue to happen.  I know that in the days and weeks ahead there will be more goodness - or, at least, they will be easier to see and experience.  I am grateful to Him and I am grateful to friends who are standing with us during this time.

Life at Six Weeks

Having passed the six week point on Saturday morning, I thought I'd share some new thoughts on this journey of grief and loss since it's been a couple weeks since I last wrote.

First, I have to say as the title suggests, my life right now seems to be marked my varying levels of stupidity.  I feel stupid.  All the time.

* I leave the room with a purpose.  I take a few steps and eventually give up and go back to what I was doing because I have no clue for what purpose I was leaving the room.

* I get to the room I was heading to and suddenly it doesn't make sense.  Why did I go in there at all?  I look around as if to gain some wisdom by the furniture and fixtures in the room.  Invariably, I will depart without a clue.  If I'm lucky, somewhere on the way back to where I came from, something will click.  Not necessarily the thing...but enough to get me to go back and ponder some more.  Whether I'm successful in my endeavor or not is anyone's guess.

* I have found that the best place for leftover hotdogs are actually in the refrigerator, and not the dishwasher where the almost went the other night.  Similarly, milk belongs in the bowl of cereal, not the bowl of sugar.  Another near miss there.

* My keys.  Seriously needing a homing device on these things!

* I often put something down with the intention of coming right back to it only to find out it's just gone.  Gone.  Not to be seen again for hours or even days.

* I have piles of emails, thank yous, and other various things to get to and my brain just feels fried.  When I do write, I'm frustrated by my super horrible scrawl that has developed over the years.

* I am still so tired.  I had started on a low dose Ambien which was then switched to a higher dose.  I immediately felt a difference.  Although I still wasn't making it all the way through the night.  Now, I can't get to sleep even with the higher dose Ambien, so here I sit writing a post at 1:48 am when I should have been asleep a few hours or so ago.  Also note, that while I am unable to sleep, my body has reacted to the medicine, so I'm a stumbling fool if I try to get up for any reason.  Bear that in mind as you read!

* Emotions still come in waves as I wrote once before.  I imagine it will be like that for some time.

* I am having a really hard time thinking of things "down the road".  I am living and beign and existing in today.  All I know about tomorrow, next week, next month, and so on will come, God willing - but I am incapable of formulating thoughts or plans about things that are too far out right now.  And by "too far out", I might even mean 6 hours from now on some days.

We began a new series at church this past weekend.  The same series was done last summer.  It's called "At The Movies".  Last year it was 4 movies.  This year it's 5 different movies.  5 weeks.  5 messages pulling biblical truths out of each movie.  This weekend it was week 1 - Here Comes The Boom staring Kevin James, Salma Hayek, and Henry Winkler among others.  Hilarious movie, by the way, if you haven't seen it. Watch it - there are so many things that could have been pulled from that movie to create a sermon.  {Note, we aren't watching the movie in church - just a few clips to accompany the sermon.}  However, the take the pastor took on the movie was something I hadn't thought of in that way.  Not exactly.  I didn't expect to cry during a sermon about that movie.

What was the truth pulled out?  Essentially it was that every man needs a cause bigger than himself to live for / fight for.  As the message went on, all I could think of was Peyton.  Peyton was my big cause.  While I had a husband and another daughter who we tried to maintain some semblance of "normal family life" with, I had a 24/7 cause in Peyton.  She was a "cause" from day one.  She was a "cause" that continued to become a bigger and bigger cause until 11 days before her 7th birthday when she passed away.

Unless you have been a caregiver to a medically fragile and special needs child or even to an aging parent or grandparent or other adult, I don't think there's any way to accurately describe the level of care given to this person.  You have to have lived it.  It was the life God entrusted us with.  It was not a burden in the sense that we felt like "why us" or "what did we ever to do deserve this".  Those statements couldn't be farther from how we felt.  You can, however, be charged with an assignment from God which is a difficult one.  It might even wind up being the most difficult and challenging part of your life.  It might be short-term.  It might go on for almost 7 years.  It might even go on for decades.  You accept it though - graciously - as your God-given assignment for your life.  For such a time as this was I placed on early - to be a part of the process of raising a little girl through her short life, which would include multiple health issues, 20+ surgeries, prescriptions beyond number, limitations I could never imagine, and needs which stretched me well out of my comfort zone, but which I tended to with as much grace as I could because I was her mother and she depended on me.

My cause.

My life.

The message went on about how some things are just worth fighting for - the cause that is bigger than yourself, the cause that shouldn't be shelved because you're uncomfortable with it, the cause that needs to be put out there to the world, and so on.  We know that our cause will meet resistance when we put it out there.  The idea of a band of brothers being so key was mentioned.  It is true.  Two are stronger than one.  Many more together are even stronger.  But I was feeling lost by this point.

I got teary eyed as soon as it was mentioned that every man needs a cause worth fighting for - a cause bigger than himself.  Yes I have Ron and Moira.  But my "cause" was the nearly 7 years of championing the cause of Peyton.  My cause is gone and the everyday stuff is over.  Our phone is deathly silent - to the point where I've thought it was broken.  It shows that all the calls we ever got, for the most part, were related to her.  Connections with people we once saw regularly are severed by the fact that she is no longer present.

I know that Peyton's legacy must go on.  I believe she is a very unique and special child by nature of who she was.  Limitations and illnesses and all she was challenged with throughout her life.  I believe she affected far more people than we could ever possibly know, and it makes me happy to think that someone's life may have been deeply altered for the better because of her.  I know mine was!

But I don't know what my cause is right now.  I'm lost.  I am lost with out that cause being so ever-present.  Yes, reconnecting with Ron and Moira is a part of what is happening now.  That is extremely important.  We will be fine.  This all will take time.  But I feel like I am supposed to have a personal "cause" bigger than myself and I don't know what that is now.

How do I find my cause?  When is too soon to start working on that cause?  I know I have to give myself some time and space now, but it would be nice to know what big thing is out there waiting.  What is it that's out there ahead in my life that's bigger than me that I can work for and even fight for if I have to to make a difference in this world?

Hospital Life...Day 32

Today is Day 32.  If you missed yesterday's post, you can read that HERE.

It's April 26th.  It was on March 26th that Peyton's home nurse and I took her to the ER with what wound up being a new fracture; the femur this time.  What was supposed to be a one night stay for pain control has turned into 32 days {and counting} involving fractures, pain control, a couple blood transfusions, albumin and iron infusions, several potassium infusions, and the list goes on.  A "simple" fracture set off a chain of events in Peyton's body which have brought her into a completely new season of declining health, to the point where we haven't been sure how this is going to play out.

We weren't sure exactly how today was going to play out.  Last I had heard, there was still some uncertainty as to what the latest gallium scan showed.  We were hoping that it would show us definitively whether or not there is infection in her leg, and if so, if it was just in the soft tissue or was it deeper down, including into the bone.  There was also the thought that Peyton might need to go down for another series of scans today.  

Yesterday was so difficult for Peyton considering all the transfers from the bed, onto the table and back {a couple times over}.  She was in a lot of pain from everything she'd endured for the scans.  In addition, the doctors are really trying to get her pain controlled, and they decided that they would transition her from the continuous Morphine {with extra bolus doses every couple hours or so as needed} to a Fentanyl patch coupled with extra Morphine doses if needed.  That transition began at about 3:00pm yesterday.  At 3:00am this morning the continuous Morphine was stopped and a new regimen for the extra Morphine doses was implemented.  She is also still able to get Ativan every so often if she needs it.  

In hindsight, I think it would have been better to start the new pain regimen today as opposed to yesterday, giving her another several hours on the regimen that she seemed to be doing {sort of} ok on.  Not knowing how well her pain would be managed with this new regimen made me a bit nervous. She did have more issues with pain control today.  A plan had to be worked out to get her to a good place {at least a plan to get her into a good place...not sure she's quite there yet!}.  A contingency plan also had to be worked out for the weekend just in case this plan doesn't work out as hoped.  Hoping and praying that her pain is a little more controlled as we settle into the night and over the weekend.  Last weekend was pretty rough.  I don't want to get back to that again!

As for Peyton's leg, it does appear that it is infection, but it is not clear as to how deep it goes.  It does appear to be pretty extensive but whether the bone is involved or not is another question.  Because it is unclear, and because of Peyton's pain issues and just her comfort and what we desire for her care in general, we didn't go ahead with any other scans today.  The doctors are going ahead and treating this as if it did include a bone infection.  What this means is that she will continue on her course of antibiotics for several more weeks.  She has already been on them for two weeks.  The risk of stopping them now and assuming it's not a bone infection is not worth it if it does happen to be in the bone.

In other news...

We have been truly blessed by the generosity of so many people.  I've mentioned many of the ways in which people have blessed us over the past month.  One woman from church has been so sweet to me, coming up here several times with food and coffee and magazines.  She belongs to a group at church called Missional Moms.  They have been praying for Peyton and have been wanting to help our family in some way.  One mom had the idea of cleaning our house for us.  A group of ladies mobilized quickly to set up a date and time this week to come and do just that.  For as many ladies who wanted to actually do the cleaning, there were as many who were quick to volunteer their time to babysit all of the children of those ladies so they could do this for us.  Today was cleaning day.  I cannot tell you how grateful we are for their generosity - for their time, their willingness to do this, their elbow grease, and so on.  I am just as grateful to the moms who spent the morning at a nearby park minding the children of these ladies so that they could be in our home.  Thank you ladies from the bottom of my heart.  I know it was a huge coordinated effort to make this happen and it was so very much appreciated!!

A little later in the day, we had a couple visitors.  It was one of the nurses and one of the techs from this unit.  They were in street clothes.  They came in with a little gift for me.  They knew that today had the potential to be another challenging day with the possibility of more scans.  Fortunately that didn't happen, but we did have pain issues to contend with.  Many of the people around here are becoming familiar with this blog, but some are also finding my other blog the Fontenot Four.  If you are familiar with that blog, then you know that I receive a monthly Birchbox that I also review on the blog {I buy it myself...no one compensates me for that!!}.  Anyway, these two ladies know my love of Birchbox and decided to give me a little treat with their own version of one!  I have to say, I'm pretty impressed with their version!!  It was so sweet of them to think of me and to do this for me.  I really really appreciate their thoughtfulness.  

This evening I made it all the way down to the first floor!!  Ron spent several hours up here and we went to the cafeteria together.  Like a date almost.  A whole 10-15 minutes at most.  You have to realize that this was newsworthy because I haven't been to the first floor of this building in 32 days.  I am on the 7th floor with Peyton.  Radiology is on the 3rd floor.  When we had the family conference a few weeks ago, it was on the 8th.  Any family dinners that the volunteers put on from time to time are also on the 8th.  We got some dinner and went back up to my "home" on 7.

It's weird when I think about it.  32 days.  I haven't set foot outside in 32 days.  I haven't ridden in or driven a vehicle in 32 days.  I haven't used a hair dryer in 32 days.  I have had what I "affectionately" call "hospital hair" for 32 days.  My hair air dries funny.  "Normal" for me is more like my picture under the "About Me" tab in the top right of this blog.  I haven't cooked a meal in 32 days.  I haven't done laundry in 32 days {although I have an amazing husband who has...and I do get fresh clothes every day!}.  I don't have a huge supply of personal items here.  It is absolutely amazing how little one really needs to get by on a day to day basis.  As a side note, I don't think there has ever been a time in my 40 years where I've gone 32 days without being outside or riding in a car.  Isn't that just bizarre??'

We are heading into the weekend and we will have a new attending.  Our 7th.  However, we're back to one we've had before.  We've had Dr. M, Dr. T, Dr. S, Dr. W, Dr. B, Dr. McB {with Dr. W coming back one day this week to fill in}, and now we're going back to Dr. W for the next week.  All have been amazing.  The transition from one to the next always seems a little scary because you don't know what the know coming in and how things will go {or at least that's what you'd think}.  But truthfully, I have never felt like anyone dropped the ball on anything or that someone didn't have all the information.  It's been seamless.  That's saying something considering we're talking six different attendings in just over a month.  I am so thankful for each of them and for the perspective each has brought to this case.  I know it's a challenging case and I'm just so grateful for all they are doing for our precious girl!!

Please keep praying for Peyton, especially for her pain control.

Have Minivan Will Travel

Our trip to Boston is a definite "go"!!  

It's a little nervewracking thinking of how Peyton might handle the trip, but it's on and we're just so anxious to get there.  We would appreciate prayers, particularly for Peyton's ability to handle the very long drive well.

Despite Peyton's continuing illness, we are able to see so much goodness in our lives this week.  God has certainly been showering blessing upon blessing on us.  It's stuff that can't be overlooked.  

A fellow Seacoaster has swapped vehicles with us for the week, allowing us to have a minivan to travel in.  Honestly, I have NO idea how we'd have gotten all our gear into our vehicle now that I'm in the midst of packing up!  I'm sure we'd have done it somehow, but it would certainly look a lot different and would not wind up being nearly as comfortable!

A fellow blogger took it upon herself to organize a fundraiser for our trip through a post on her blog:

http://anightowlblog.com/2012/08/a-helping-hand-sarah-of-the-fontenot-four.html

I share that not as a way of seeking donations {I am not!}, but as a way to show you the hearts of some of the people in the blogging community.  This was not something that I sought out but it has turned into a real blessing for us as we head into this trip.  The generosity of people amazes me.  People's comments below that blog post moved me to tears, as did the donations received.

A couple ladies from church organized meals for our family for the past few weeks.  I was seriously amazed, overwhelmed and in awe of how a church community pulled together to help us out.  I knew a few of the people who brought meals, but many people were not people I'd previously met.  After the 10 days of meals (per the schedule they created) was up, these ladies still had people emailing or calling them asking if they could help, so we had meals this past week as well.  This seriously blessed us because I have been so exhausted with Peyton's IV med schedule that the last thing on my mind was meal planning and preparation.

We also have another group who has been providing meals for us on Sundays, which has been a real blessing for us.  Again, it's not something we sought out, but people felt a desire to help and it is so appreciated by us.

So, I sit here in my apartment which looks like a tornado hit it.  Between Peyton being sick, life happening (or not happening), laundry, planning for this trip, and school about to start, it's a disaster.  I'm always a tad embarrassed to let people in because I keep thinking about what my mother would have thought of the state of my place!!  It's not passing any inspections right now! :)  Hopefully the people passing through have managed to silently extend me a little grace on this matter!  My apologies if you have witnessed this mess - I'm normally not like this!!

We've packed all we can pack for now.  There's so much stuff Peyton needs for her morning routine that it can't be packed.  I've done as much as I can in terms of prep for what the morning will bring, but I think I'm about done for now.  We hope to get on the road fairly early.

I'm really excited about seeing a friend tomorrow as we stop in Virginia for the night.  Then Sunday it's on to Boston.  Somewhere on this trip - either Sunday or next weekend - I hope to see one of life-long friends, Heidi, who lives in the Baltimore area.  As we will be passing right through there, it would be a shame if we didn't get a chance to stop.

Please pray for safe travels for us and for Peyton's health.  I'm really excited at the opportunity to have these appointments next week.  Hopefully we receive some good news.  I realize, though, that it is possible we don't get answers we were hoping for, but I'm praying that that is not the case!

Thanks again for all your love and support!

Update

We made it through the weekend!

Peyton is feeling better still.  She still sounds kind of junky and has a lot of secretions, but overall, improved from last week.

We had her follow up appointment with the Infectious Disease doctor who, as it turns out, also attends Seacoast!  He is so nice.  Anyway, he said she sounded better today than she did at the appointment just the day before Peyton went into the hospital, so that's encouraging.  He stopped her antibiotics.

Please keep praying that she continues to get better and that we do not start a cycle of one hospitalization after another with ongoing respiratory issues like we had last year!