Third Anniversary

Today we remember Peyton on the third anniversary of her passing.

Another year has gone by. Another anniversary. Three years has passed in an instant, yet it has been the longest three years of my life in many ways.

I felt like the second year was harder than the first in many ways, but it truly was. This third year has passed by in a flash and I feel in some ways it was perhaps a little easier than the previous two years, but in many ways it held many difficulties of its own. The third year was challenging. Long gone are the days of feeling numb because of the sheer grief I experienced in the beginning. Even the days of overwhelming sadness and grief have lessened in number. I no longer feel the strong waves of grief crashing into me daily as I struggle through the days since losing Peyton. But I do feel grief and loss. I feel sorrow and pain. I feel all of the things associated with loss, but it's somehow a little different. I am not "better". I am not "over it" - and there should be no expectation that this could happen.

I mentioned in my post last year how I felt like the level of depression during the second year was far greater than in the first. I can honestly tell you that the depression is still present. There was a point this year where I honestly thought that the depression was lifting somewhat. Not entirely, but I was feeling "better" to an extent. I had been taking anti-depressants and I honestly didn't want to be taking medication to help me feel better. I just wanted to be better. I went off the medication.

It was during this time where I was bombarded by a crushing wave of grief; blindsided during a message at church. I was shattered in that moment as the message ushered in so many emotions I hadn't felt in quite some time. The message had nothing to do with Peyton or our situation. It did involve a young child in the hospital needing a miracle. He got his miracle. We did not receive the miracle we prayed for - not the one that would keep Peyton here with us on earth. I truly know she is healed, but in this moment ... in this moment, I cannot even begin to express the waves of grief that kept crashing over my heart and soul as memories of those last weeks in the hospital with Peyton came flooding back.

I really haven't shared this with many at all, but this let into a season where my depression just went spiraling out of my control to the point where my brain was keenly aware of how people might choose to respond in a desperate attempt to flee the bondage of depression. I understand that. It scared me. In my lowest moment I had Ron take me immediately to the doctor where I asked to be put back on anti-depressants. I remain on them today and I will remain on them as long as I need because there just should not be any shame in needing help to cope with any form of depression. There shouldn't be a stigma attached to requiring medical help. People get medical help for all kinds of issues. Depression shouldn't be thought of differently.

As far as depression goes, I am much better after being back on medication for a few months or so now. I think Ron would agree that I made the right decision that day.

Moira is doing exceptionally well, all things considered. She still thinks about her sister. That day at church when I experienced that moment - Moira came out of her service having drawn a picture of Peyton lying in a hospital bed. It appeared as if she was waving. Moira's service was in no way the same as the service I had been in. There would have been no connection and no way for her to know what I had seen and heard in my service. Yet she came out having drawn this. When asked why she drew that, she simply responded that she just felt like she had to. Of course I cried at this. It felt to me like Peyton was telling me she was ok.

Ron has spent the past year and a half back in school. He initially was getting some pre-requisites under his belt, but he is currently pursuing a Masters degree in Marriage and Family Therapy through Liberty University. It is primarily done online, but does require some on-campus visits throughout the program. He completed his first week at Liberty just last month. The next will be in June.

We are also working on ourselves and our family as we try to reclaim some form of "normal". For so many years our lives revolved around the care of Peyton. Much as we tried, with the level of care she required, there really was no way to have a "normal" marriage. We are working together on reclaiming that. We just celebrated 16 years of marriage last week. I am truly thankful to be on this journey with Ron.

Many thanks to everyone who has continued to hold us in prayer, especially at this time of year. We truly appreciate you.

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

Second Anniversary

Today we remember our precious Peyton on the second anniversary of her passing.

It seems so surreal that it has been two years. One year was hard to fathom, but two??  I honestly don't know where this past year has gone. It has flown by. Two years has passed yet I remember vividly the events leading up to this day in 2013. It was yesterday. It was a lifetime ago.

I re-read the post I shared on the first anniversary and considered where we were then versus where we are now. One might make the assumption that being a year further removed from the loss would make things easier, but I have to say that this past year has been far more difficult for me than the first year. I had heard that the second year can be harder. I wasn't sure about that when I first heard that, but for me it has proven to be true. I don't know if it's the fact that I'm not in the fog, haze, and disbelief over her loss; things that maybe sheltered me from feeling the entire impact of loss during the first year. I'm not sure.

The level of depression I felt during this second year was far greater than during the first. Of course, being in the second year, I felt like I had to not be depressed; to not show it in public. I felt like I was obligated to get back to what everyone else went back to in the days and weeks after losing Peyton - a "normal" life. Intense depression will keep you from what is considered "normal". I don't think life would be "normal" even if the depression hadn't settled in like it did.

I am doing much better now. It's an uphill climb out of depression - and it is not easy. I am far better than I was those many months ago. It's three steps forward, two steps back sometimes. But most days are better now. Much better! Not a day goes by without remembering Peyton, and that's a good thing. She'll always be a part of our family.

I will say that in the midst of this year, I have restored an important relationship which really needed restoring. I am so beyond grateful for that. It has brought much peace to me.

Just like last year, the past 40 days have been spent reliving the days that I spent with Peyton in the hospital. I so vividly remember how the events unfolded. I look back in thanks for the time that I got to spend with Peyton in her last weeks. I am thankful for so many things - the exceptional team of doctors and nurses who worked so hard to help her; the friends who helped us both at home with Moira and with us at the hospital; new friends that came into our lives because they wanted to do something; family who were able to be with us both before and after Peyton passed; our church family who stepped in like nothing I've ever seen before and carried us through such a difficult time.  While I can recount the events of those days, I've tried to put more focus on the things to be thankful for and on how I saw God's hand in the entire situation.

Moira is doing much better this year. She misses Peyton greatly. She loves her sister something fierce. We've been blessed with such an exceptional guidance counsellor at her school who has made herself available to Moira to talk to. She also invited Moira this year to participate in a brand new program offered after school - a support group for kids in the school who have been through a loss. I think this was such a valuable opportunity for Moira. I have no idea who was in the program or anything that was discussed - and that's how it was designed. All I know is that it seemed to be very beneficial to her, and that is such a blessing to us.

We recently learned that one of Peyton's home nurses passed away a couple months ago. She was the last home nurse to work with Peyton. She was with us in the ER the day we went in for the last time. We had no idea that that was going to be it. I did get the chance to have lunch with the nurse one day sometime in the past year or so. I had no idea that that was that last time I'd ever see her again. She was an exceptional nurse and a wonderful lady. She is greatly missed.

As we try to learn what "normal" looks like for our family, my prayer has been that God reveals to us what our "next" will be. I've been praying fervently for this for over a year. I have felt strongly that there is something, but have no clue what it's supposed to look like. I continue to pray for wisdom and discernment in this area for our family. I know God has a plan and a purpose for us and we wait expectantly that He will lead us to exactly what that purpose is.

Many thanks to everyone who has continued to hold us in prayer, especially at this time of year. We truly appreciate you.

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

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

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}

Plunging Back Into Reality

Time for an update on Peyton.  It's been a few weeks!

Well, for the first time in about four and a half years, Ron and I got out of town...on our own....for a few days!!!!  I can't even begin to describe how much this break was needed - for both of us individually and as a married couple.  Truth be told, it's a crying shame that it has taken this long to get this bit of respite.  We needed some "us" time to regroup.  They say that 85% of families with special needs children split up.  85%.  You can't even imagine how much we want to stay in the 15%.  If you have a special needs child, perhaps you are in the 85%, and just know that my heart and prayers go out to you.  I can't imagine how you do it.  If you don't have a special needs child, it may be impossible for you to even imagine that this can happen, after all, marriage is a commitment, hard work, but worth it, etc.  It may be unfathomable that this could happen.  Thankfully we're not (and have never been) at the point of considering a split.  That said, I can totally see how it happens.  Totally.  So, once again, I can't even believe it took us this long to get this respite.  Now that it's over, trust me, it's not going to be another four and a half years til it happens again.

Ron and I left on April 29th (our 11th anniversary) for Gatlinburg, TN.  We stayed a couple nights in Sevierville which is not too far from Gatlinburg.  The third night was spent in Gatlinburg itself.  We did a lot of sight-seeing.  The mountains are absolutely breathtaking.  I've always loved traveling to the mountains - any...doesn't matter where.  We spent the better part of the 30th at Dollywood - yes, the amusement park of Dolly Parton's.  It was quite a lot of fun.  We had a blast.  It really took us at least two full days before we really started to decompress. By that time it was nearly time to come back.

I missed the kids tremendously.  We had round the clock nursing set up for Peyton, and my dad came down to visit and he looked after Moira.  I can't express enough our appreciation to all involved in making this happen.

Our frames of mind were different when we came back.  We felt somewhat refreshed.  Still tired and whatnot, but we got back a little bit of ourselves in that time.

We returned on the Monday and everything was fine.  Woke up Tuesday and began the day as usual and then it was like everything came crashing down in on me.  Why?  Oh, if you've been following this blog for any amount of time recently, you may have a clue.  If you follow me on facebook, for sure you know!  Peyton's tube was clogged.  Right off the bat.  Before Moira even left for school at 8am, I knew I was taking Peyton to the ER.  Again.  Everyone around me can attest to the fact that I was beyond upset, frustrated, angry, etc.  It was like our respite was a dream.  Like it never happened.  Like we could have saved ourselves a lot of money and not left, because in an instant everything was as stressful as ever.  I felt like God was just taunting me with a nice getaway only to have everything revert back to the horribleness of tube clogs and ER visits in an instant.  Ever feel like someone's just playing a cruel joke on you?  And sitting back laughing while they watch your reaction to the attacks?   Yeah, that's how I felt.

So here it is: if EVER my own life depends on a feeding tube, you can just forget it.  Unless they come up with a better solution....forget it.  As for Peyton, it is what it is and we will persevere because it is for her benefit that we do all of this.  But, my goodness, if ever there was an invention that had such amazing benefits on the one hand but horrible potential side effects on the other.

Prior to our trip, we'd gotten our nursing schedule for May, and, again, it had more holes than a hunk of Swiss cheese.  Since our return, we have been dealing with trying to get things straightened out.  To say it has been stressful and frustrating is such an understatement it makes me laugh.  Everything we're trying to do is to ensure that Peyton is getting the medical support that she needs at home so that she doesn't wind up back in the hospital as much as she has been in the past year or so.  If that's not happening, then she's not benefiting.  If she's not getting what she needs, then it's not giving me the respite I need at home on a daily basis.  That, in turn, does not do Peyton any good.  Everything about the schedule we need is about what is best for her - because it works - because it meets her needs.  When the schedule doesn't happen as it should, none of that happens.

Please pray for us.  We've been back a week and a half and I know my own stress level and frustration is absolutely sky high and beyond.  It does no one in our family any good to have even one member of the family feeling like this.  I keep hoping and praying that everything will work out.  I'm still hoping and praying.

Next time I see a Carnival cruise ship docked in downtown Charleston, I may just become a stowaway!!  Just for a little bit! :)

In good news, Peyton had an eye exam under general anesthetic last week and that went as well as we could expect.  Her prescription didn't really change, and the doctor is encouraged that there has been slight growth of her eyes.

I have another potential piece of good news...but I need more info and will post on that later.  A few know what I'm referring to and if you do know, then just know there's no development in that area yet.  I'll leave you all with that little teaser!

Not much else going on.  Isn't that enough???