Thursday, May 15, 2014

Eight

Sweet Peyton would have been eight years old today.  I am sharing some images from each May of her life:

2006 - newborn

2007

2008

2009

2010

2011

2012

2013 - one of the last pictures taken of her, less than 24 hours before she passed away

Happy Birthday in Heaven, Sweet P.


Sunday, May 4, 2014

First Anniversary

One year ago today, at 6:12 am, Peyton went to be with the Lord.

I type those words, and I cannot even believe that it has been an entire year since she passed away.  Twelve months.  365 days.  An entire calendar has been flipped through.  It just doesn't seem possible.  We've been through every "first" - her first birthday in heaven came just 11 days after she passed.  As I write this, my emotions are every bit as raw as if it was just yesterday and not an entire year ago.

This past week has been quite difficult.  I've referred back to this blog several times over the past several days, re-reading bits of that 40 day hospital stay which would end in Peyton's passing.  I have been reflecting on where we were at "this time last year" on several occasions.  Ron and I celebrated our 14th anniversary this week, but it's just so different now as we were in a very difficult place at this time last year.  We were facing decisions and meeting with an entire medical team to discuss how to proceed.  While I have no doubt in my mind that we made our decisions with all the love, respect, and dignity that was due Peyton, you simply cannot imagine the pain and heartbreak that goes along with those unless you have been in that position.

I think, for the most part, the three of us - Ron, Moira, and myself - are doing alright.  We all have our "days".  Moira frequently talks about how she wishes Peyton didn't have to die.  Just the other day, she was saying again that she wishes Peyton didn't have to die so close to her birthday.  Moira is as aware of what the month of May brings as we are.  A year out, I can say that we have experienced some joy in life again, but the loss is still very fresh in our minds.  There is, and always will be, a large piece of our lives missing.  Yes, we carry Peyton in our hearts, but her physical presence is so deeply missed.

We have so appreciated the prayers and support we have been given over the past year - more than a year, really.  Our heartfelt thanks, once again, to all of the people who rallied around us during Peyton's hospital stay and after her passing.  God used so many people in so many ways to support us and lift us up - and He still does.  You just cannot possibly know how much your gestures have meant to us.  I know things will become easier as time goes on.  Life won't ever be the same as it once was, but it will get easier.

We are still just so grateful to all the people who cared for Peyton.  There are so many people who were involved in her care and we will always remember them.

If you have a particular memory of Peyton you'd like to share in the comments, I would love to hear from you.  Thank you so much!

You can take a look back at her Tribute HERE.

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose."  {Romans 8:28, NIV}


May 18, 2006 {3 days old}

October 2013 {17 months old}

Peyton and Daddy - May 3, 2013

Peyton and Moira - May 3, 2013

Peyton and Mommy - May 3, 2013


February 20, 2013 - laughs and smiles while wearing Mommy's glasses

Wednesday, March 26, 2014

A Year Ago Today...

One year ago today, I wrote a hurried blog post requesting prayers for Peyton as she as back in the hospital once again.  You can read that post HERE.

Earlier that same day, I'd posted a long post about genetics and the possibility of going back up to Boston for a second visit.  You can read that HERE.

As I sit here right now, I am simply amazed that it was one year ago today that Peyton left our home for the last time.  One year ago today, I knew that there was something just not at all right with her.  She was far beyond her normal "self" and was in pain.  It broke my heart each day to see her in pain because she could not communicate to me where she was hurting or what exactly was wrong.  Her health had been declining noticeably for a period of a few months, but this day was a day where things just weren't right at all.

I distinctly remember this day one year ago.  Peyton's nurse and I hurriedly got Peyton ready.  Ron, Moira, Peyton, the nurse, and I loaded up in the car.  Ron dropped Peyton, the nurse and I at the door to the children's hospital ER.  We sat in the ER for ages as the doctors tried to piece together what was going on.  They did discover a new leg fracture, in the same leg as she had had a fracture just a month or two earlier.  "Copper bones", as they would become known.  That's what Moira called {and still calls} them.  Brittle bones caused by a severe copper deficiency.  We wouldn't know that at that time a year ago, really, but that's what it was.




A year ago today, Peyton had a broken leg.  A year ago today, Peyton was admitted to the hospital overnight for pain management.  A year ago today, we had no idea we would spend the next 40 days in the hospital together - she and I for 40 days {I did not leave her to go home once.  I left her room fewer than 10 times in 40 days, for a total of probably less than one hour altogether.}

I did not know how significant our leaving home was on that day one year ago.  I didn't know then that not all of us would return home.

One year ago today, our faith and trust in God began to be shaped in a way it hadn't been before.  Yes, we had tremendous faith and trust in God at this point in our journey.  A year ago today, we began the most painful and difficult part of our almost 7 year journey with Peyton,  It would test and sharpen our faith and trust in God.  It would bring us closer to God than ever before.

One year ago today, our life began to change forever.

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.  {Romans 8:28}


Tuesday, March 4, 2014

Ten Months & A Diagnosis

On Monday, March 3rd, 2,849 days after Peyton was born (407 weeks exactly), we received a DIAGNOSIS. This came exactly 303 days (or 42 weeks and 2 days) since Peyton passed away. As in her life, Peyton's diagnosis is complicated. 

The gene is SLC33A1. Boston Children's Hospital was working on a theory that Peyton had an EXCEEDINGLY rare copper disorder linked to this gene. Two mutations need to happen to have this disorder. We knew she had one. We found out this past Valentine's Day that she may have had the second, but more studies were needed. The research was being done through both BCH/Harvard and the NIH in Bethesda, MD. 

We have confirmed that Peyton DID have two mutations on SLC33A1. This gene's responsibility is to transport copper through membranes of the liver. What was discovered is that Ron had one of the mutations and I had the other. We had also discovered Moira has the same mutation as me.

Here's the thing. Ron's mutation is the ONLY documented mutation of this sort EVER in medical history. My mutation is the ONLY documented mutation of this sort EVER in medical history (well, except for Moira). We know these mutations are inherited, so they came from somewhere. But Ron and I have a mutation (each one different) that is unique in the world. Clearly this must exist elsewhere in the world, but everyone in the world isn't tested for these things, right?! Both Ron's and my mutations are "wonky", but my mutation is worse. Ron is missing 10 letters of his gene (whatever that means). I only have 1/3 of that gene. We are healthy. Moira too. If there were to be a problem related to this mutation, Moira wouldn't be here. The combination of these two mutations is lethal.

Peyton's diagnosis is the ONLY RECORDED DIAGNOSIS EVER in the world. Ever. The case study they were studying when they were hypothesizing what Peyton's disorder was is on the same gene, and there were only about 5 children involved in the study. Each of those children had two mutations on this gene. Each child in this case represents a unique, individual set of mutations on this gene. Each one unique, but the same gene. Of these children, Peyton lived the longest.

Think about it. Knowing what you know now...consider the odds. What are the odds that Ron and I would meet up?? I grew up in Canada and he grew up in Texas. The odds are mind blowing. As I listened to all of this, this scripture went through my head over and over:

"For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago." (Ephesians 2:10)

I don't believe that Peyton's story is over.  Just as those 5 children in the study I mentioned helped to bring us to the point we are at today, so I imagine Peyton may help someone else one day.  Even after sleeping on all this information last night, my mind is just blown away by everything.  The odds of Ron and I getting together.  The odds of each person with mutations on this gene (the children and us parents) each having a separate, distinct, unique mutation - one combining with another - to form a child with this disorder.  Then I consider all of the events that lined up in our lives to get to this point.  Had we not gone to Boston in 2012, we may never have learned what we learned.  I don't think we would have.  

What we do not know here on earth, I believe God certainly does know.  He is the master planner of it all.  He orchestrated everything from beginning to end.  Having an answer doesn't explain the "why her" questions and it doesn't bring her back.  In fact, having the answer would not have saved her.  I just know that I believe that each moment and each piece of this journey has been a part of a God-orchestrated plan for some greater purpose which we may not have the ability to understand.  Maybe not now.  Maybe not ever.  I doubt the families of those 5 children ever learn about us, but if it weren't for them...  

Mind blown.  That's about all I can say right now.

P.S.  Yesterday I shared part of Peyton's story and our testimony over on the "Monday Matters" feature at Matt Ham's blog.  If you haven't, I encourage you to head over there and read it.  You can click HERE to jump over there.