Fourteen Weeks

As I sit in Peyton's room this morning, I am surrounded by so many reminders of her life here with us.  While the room has become a convenient staging ground for laundry folding, so much of this room is still hers.  Her little white dresser is still packed with her socks, pajamas, shorts, and so on.  The shelves of the bookcase in her room still hold the last open package of diapers, wipes, and ointments from three months ago.  The sheets in her crib remain just as they were on March 26th - the day we went to the emergency room.  The shelves beneath still hold a lot of her supplies.  The only thing missing is Peyton herself.  While I believe she is her with us still in our hearts, she is actually still here.  Her urn sits in her crib as we have not settled on where to put it.

It was fourteen weeks ago this past Saturday that Peyton passed away.  It seems like a lifetime ago, yet it seems like it was just yesterday.  The pain of her loss is still very fresh.  Her physical absence is noticed each and every day.  Thoughts of Peyton are at the forefront of my mind all the time.

Ron and I finally had an opportunity to break away from the stress of it all.  The week before last, we were in Las Vegas.  We left on the Monday and returned the morning of the following Sunday.  To say we needed this getaway is an understatement.  Las Vegas has historically been our "go to" place when we have needed to get away from reality.  We've been 7 or 8 times now.  There is probably nowhere on earth further from what is real than Las Vegas.  We didn't gamble a dime, but we had a really good time reconnecting and just being with each other.  We enjoyed some incredible food {you can read about that HERE}, took in a couple shows, and walked...a lot.  All good things must come to an end, as they say.  We've been back a week and I feel the stress of life once again weighing very heavily on me.  I guess we need to figure out a way to get away more often.  Not sure how...but clearly it's very much needed.

I am finding these last few days to be much more difficult than "normal".  I'm feeling "off".  I was having a hard time figuring it out, but it shouldn't have been that difficult.  Wednesday, August 14th will mark 12 years since our son, Jeffrey, was stillborn.  After twelve years, you'd think it would be easier.  Yes, it has gotten easier coping with anniversaries and holidays over a dozen years, but this year is different.  The wounds seem like they have been ripped open once again with the loss of Peyton adding to the number of children we have in heaven {3 if you don't know}.

I am remaining strong in my faith as I trust in God and live with the hope of the promises He makes to each of us.  But loss is loss.  I think you could have the strongest faith in the world and still feel the incredible pain and sadness associated with the loss of a loved one.  I don't question God's motives in creating Peyton the way He did.  She had a purpose.  I think she still does.  But I would give anything for another moment to hold her and tell her I love her again.

School starts a week from today.  Peyton passed away towards the end of the last school year.  We had so many people coming and going, that it was pretty busy around here.  Summer hasn't been filled with the enjoyment we'd hoped for.  I thought maybe it would be an opportunity for more bonding and doing things but the truth is we are simply exhausted and worn down from everything that has happened.  I have little energy for doing much of anything.  Now that school is about to resume, I'm going to have more time on my own than I have in the past few months.  I'm concerned about how to occupy my time.  I want to add meaningful and purposeful things to my calendar - not just scheduling "things" to fill my time.  I'm not looking for an escape, but a way to figure out who I am.

That's another very difficult thing right now.  I feel very lost and without a purpose.  Yes, I have my family and that, of course, is a purpose.  I feel like there should be something out there that is meant for me to do that is bigger than myself.  I don't see it.  I had it - it was Peyton and she is gone.  Still another thing is that, as you might imagine, the number of people who can relate to us are few and far between.  I found after miscarriage and stillbirth that you suddenly discovered so many people around you had faced similar challenges in their life.  I've yet to suddenly discover someone who has walked in our shoes where Peyton is concerned.

And so life goes.  Right now, it's another wave of feeling the weight of loss.  There have been better days through this process and there will be better days ahead.  This is just a difficult time right now.

As always, I appreciate the love and support that has been shown during this time.  Thank you.

Boston - Day 2

Today was the day to see the Pulmonologist here at Children's Hospital Boston.  This was an appointment that was more of a "just because we're here" sort of thing.  However, the appointment turned out to be really beneficial.  In fact, I think it may actually prove to be more helpful to Peyton than the Orthopedic appointment in the long run!

The Pulmonary doctor was very nice.  We spent a LONG time with him.  Lots of history to go over.  In a nutshell, he said that he would love to try to see her back at her baseline before all the illnesses - she may have the potential to get back to there if we can recreate how things were before all the illnesses.  He said a trach is an option he would not take off the table entirely, but would not do right now.  Remember, though, that this is something that we have long been opposed to for many reasons.  He said the benefits would be mainly for airway clearance and that it would not entirely remove the possibility of aspiration.  He had some suggestions as far as medications.  The doctor also said that with everything going on right now, he would definitely recommend a bronchoscopy.  He recommended a chest CT scan.  She has not ever had one before, but he said that she would have to be in her "best" health once she gets past this illness just so we could have the best understanding of what's going on.

As a side note, in a previous post, I mentioned that Peyton's Cardiologist back in Charleston wanted to do a heart cath if there was ever a time coming up where Peyton would be having another procedure under sedation.  It wasn't something he'd just jump into in and of itself.  So, if Peyton does wind up having a bronchoscopy, she will likely also be having a heart cath.  Also note that none of these is being done in Boston.  The bronch was a recommendation for her doctor at MUSC.

We are being set up with a therapist tomorrow morning so we can go over her Smart Vest - she will take a look at how she tolerates the current settings and possibly look at how the settings can be increased (if at all).  They are trying to get us in with their Motility group while we are here.  We also have an appointment at a satellite office in Waltham, MA with a sleep doctor.  This is so Peyton's sleep study can be reviewed and we can make sure everything with her bipap is set up as it should be and that her mask is a proper fit/type.

The Pulmonary doctor today was extremely helpful and he is happy to discuss the matters we discussed today with her doctor back in Charleston.  I've already been in touch with them and have passed along the doctor's information so they can get together and discuss everything in far more detail than I could ever do.

This afternoon, we took a side trip to Salem, MA.  We went to the Witch Museum which Moira described as being "horrible...for a museum."  Sigh.  She would rather have gone to the Ansel Adams exhibit at the Peabody Museum across the street.  She's 8.

Today is also the 11th anniversary of the loss of our son.  I blogged about that:

http://fontenblog.blogspot.com/2012/08/eleven.html

We typically order in a nice dinner and have a cake in his honor.  It's a little different this year since we're not at home.  Ron's off on a walk to grab a nice dinner for us and we will be trying that restaurant's specialty dessert - a Mars Bar Toastie - Irish mars bar, belgian waffles, bananas, fresh cream and strawberries.  Oh. My.  I will have to take pictures.

I will keep you updated as the week goes on!