Wednesday, July 2, 2014

And Though She Be But Little, She is Fierce.

A Donor Momma's Thoughts with a Clear Heart: Post Surgery

As you all know, the past 2 weeks have been a struggle for Cambrie as she experienced a large set-back during her open-heart operation on 6/18. We met our precious "Baby Girl Maine" in March and we were so immediately in love with her. Cambrie's parents told us then of her upcoming surgery to finally let her heart be 'free' from the band and the hole. Somehow, I thought we'd be fine with knowing the outcome via text messages at the time of receiving the news of the upcoming surgery. But as the weeks led up to her surgery, my mommy heart became burdened and heavy; like we needed to be there.
In Maine.
With Cambrie.

Some of my closest friends urged me to go if I was feeling this way. I couldn't accept the thought of 'help' to get there. But thanks to my dear friend and fellow Molly Bears advocate, Dannah, the plane ticket page was launched and so many of you felt that our little family needed to be there too. You made it happen.

Believe me, if it weren't for you, we couldn't have gone.
No way.
We will FOREVER be grateful. Here's why...

Can I tell you- WOW. I now know the reason why I felt that burden to be there. God was letting my mommy heart know that Cambrie was going to be in a critical situation and I would have been crushed to have witnessed this via cell phone texts.

Seeing "Baby Girl Maine" in the PICU, lifeless, with all of those tubes and wires running out of her body brought back a flood of emotion that was a bit disheartening for me. Last time I saw those types of tubes was the point we were saying 'Good bye' to my pride and joy; Eli. And to see his recipient fighting for her life gave me a fear that I hope to never feel again, as I couldn't imagine reversing this life and not having Cambrie in it now. She's given me so much joy and peace. Her life is a planted gift to me that only my little Eli was able to give to me.

God truly knew the desires of my heart when he opened that door for us with the Gadbois-Cates family on the other side. 

We had slowly walked in to her PICU room on day #3 when the nurse stopped to ask who we were. I stuttered as I was trying to {ackwardly} explain "We, um, we are....We are the donor family?" when the nurse quickly replied "Oh yes! Mom and dad said you may be by to see her. You have permission to come back whenever you want." I was stunned and for a moment felt a great gratitude to Nick & Kiara for valuing us so much that we, us, this little fraction of the puzzle, could go back and see their precious and critical baby girl? They have given us such a large part of their lives by opening it up to us to watch her grow now that they are even granting us permission to come in and be with her? It dawned on me that we really are indeed, family now. I was beginning to think they might love us just as much as we love them. Of course if we are matching apples to apples, Nick & Jesse have a bro-mance that I've never seen Jesse take on before. Long story, but they are BFF's now.

Something else burdened me that has always been hard to think about. Maybe this was another reason why I didn't feel the need to go to Maine in June to be with Cambrie during her surgery too. And to tell you the truth, I don't talk about it much. At 7-8 years old, you don't process death clearly. I had already lost my father at that point from a massive heart attack but I also had a young dear childhood friend lose her life during her heart surgery too and that rush of emotions came back to me. Heart surgery in my mind doesn't end up well.

My daddy is gone. Amy is gone. Eli is gone. God, please don't take my Cambrie too. 

There came a day where I had to be brave and hand it over to God. Our plane tickets left out of Portland, Maine before Cambrie was even fully stable. She was still having ups and downs and that was one of the hardest days of my life leaving her like that (not that being there could have made any difference) but especially knowing that Kiara (Cambrie's mom) was hurting. That was the worse, as I feel as connected with Kiara as I do Cambrie. And Kiara was in a place of unassurance as I was in just a few years ago.

But the next day, a text came across my phone with a photo of Cambrie with one eye open. I finally saw progress through the eyes of an iphone. (No complaints here!)

Each day after our departure, Cambrie began to have more successes rather than relapses. And just yesterday, she was released to go home. 

And thanks to Kiara's numerous daily updates, the uphill climb for Cambrie was more pleasing to us to be able to see from home because we knew she was over that hurdle. Cambrie is a fighter. I haven't seen a fight like that since Eli's last hours. Those two lives are like 2 peas in a pod.

I can totally tell you today that 4 years of fighting to get to the point of "Baby Girl Maine" made me feel although I felt like I had conquered a mountain earlier this year. But today, that mountain was so much more strenuous, so much more emotionally involved, and so much bigger than I could have ever dreamed of. My eyes have been opened to my God's many blessings involving trials and each one of these steps I begin to heal from this more and more. Our precious hope that was once transparent is now showing us strength in a baby girl who changed everything in our paths.

In Cambrie's nursery reads:
True story. True Hope. True bravery. 
The End. 

Thursday, May 15, 2014

The Space Between {Cryolife}

There's one facility in this world that has housed every inch of my heart, my hope, son. I have prayed for this facility- wherever it was, because it would ultimately lead to the peace in my heart that I needed to keep going on in this life. I knew the people there handled my son's heart. I knew they did the dissections of his aortic and pulmonary valve in August 2009. They filled out his paperwork. They tested and housed and packed it up. They mailed that aortic valve to Dr. Quinn in Maine. They are the ones responsible for the cycle of a healed heart of the donor mom. They didn't know it at the time, but they held my entire world.

Cryolife. The place where Eli's heart went. Kennesaw, Georgia.

Last December, as we were traveling the state of Arkansas during Eli's Donate Life Rose Parade floragraph finishing events, we were fortunate to have met Ronda Horstman, a regional rep with Cryolife who was flown to Arkansas to join us for one of the events. Just a week prior to meeting her, we were given the news about "Baby Girl Maine" via email and I was floored when we were actually introduced to her in person.

I just knew she had flown in to give us more good news about "Baby Girl Maine".

Well, that wasn't the reason after all. It was actually because Cryolife just felt that it was important to have Ronda out there to celebrate Eli with Arkansas. But Ronda would answer so many questions that Jesse & I had over the years that very day and little did we know, she would become a dear friend in our lives through the Rose Parade and through the process of meeting Cambrie. We cherish her friendship very much now.

Ronda gave us a call and asked us to fly out to Cryolife to speak with the staff and technicians about our 4-year journey of heart valve donation. Knowing a visit from that facility was on our dear friend, Becky from ARORA's bucketlist too, Cryolife flew all 5 of us out last week.

Physically walking up to this facility took my breath away and caused me to get...ah....a bit choked up.

I was about to enter our house of hope; the facility I had knew safely held the living piece of my son was right under my feet. And it was very likely that a piece of Eli was still in there; his pulmonary valve- the one valve we haven't received a notice on- his other gift of life.

We were given a tour around the facility. Saw something through an observation glass wall that I never thought I would witness:
...a heart dissection as they dissected the aortic valve off. It was incredible. Just incredible.

And heartbreaking.

Knowing that less than 48 hours ago, that person had passed away and had given the gift of life. And that somewhere, a family was planning a funeral. And then it dawned on me that this was us 4 years ago. This is how quickly the turn-around is on a donation of life and the seriousness and dignity that Cryolife takes in order to preserve that life-vessel. I was watching our situation first hand through those technicians hands as they dissected that heart and as I listened to Tim explain to us what was going on. It was there that I realized that Eli was in good hands from the moment we signed his little life over. No more doubts existed.

Annnnd if you were wondering- Eli's pulmonary valve remains at Cryolife waiting for that surgeon request. It has until August 28th, 2014 to be requested and transplanted (Year 5). Can I tell you that the feeling of being in the same building as his valve was a good feeling?- I was close to a part of him again. That hadn't happened since I left Cambrie in March.

We spoke to 2 large groups that day in their auditorium. We were able to share our video testimony with them, talk about what happened thereafter, and most importantly, show them the news clip of Kim Block's of when we met Cambrie. A job, most days, seems like just a job. For Cryolife, it is no different. But what they were able to experience (and the joy of being able to share it) was to face the critical point in a family's life and be able to watch the beautiful outcome of a tragic situation. Its taking the tragedy out of the hands of the beholder and witnessing a true miracle of God at work within their career each and every day.

The Space Between: 

To get from:
Point A: the death of my twin son to Point B: the transplant into Cambrie means that there are many individuals who do this as their "career", although I believe what they do is much more than a career. Its a faith-built calling.

Truly the most humbling part of the entire day was when Ronda stood up and asked people to stand. The names on the list that she held and called out were the names of the employees involved in the handling of Eli's donation; whether it be the call-person who took the initial call from ARORA on 8/8/09, the person who unpacked his heart, the technicians who dissected his heart, the quality control team, the clerical team, and even the final man who packed up that aortic valve and sent it to Portland, Maine (see photo). They stood up, they waved at us, and for each one a tear would drop from my face. I think Jesse was surprised as much as I was. In fact, we are still talking about it.

Many, many unexpected tears from this momma last week. I am more knowledgeable, stronger, and even more thankful (and blessed!) for being able to meet the people who had a part of Eli's life in their hands. They held my hope, they processed my hope, and they sent my Maine. I thank God for Cambrie each and every day.

And for the *potential* situation that Eli's pulmonary valve will be requested and transplanted before August, those employees who are (and will be) within that process are in my current prayers, as they, too, are part of a greater picture.

It was truly one of the most amazing experiences we'll ever have and its something that we'll remember forever. We are so blessed to have been able to share this with Becky from ARORA, as she and Lissa have been there since the very beginning of Eli's journey into Donate Life. Such an honor to stand before this Cryolife team and give back to them in form of good news. And a job well done to them. They save lives every day. And I can't help but to think to myself here (a message I want them all to know) the quote from a great movie "The Help":

"You is kind. You is smart. You is important."

McGinley Family believes their work is VERY important! For so many reasons; even for donor families. 

(Becky Gertsch (ARORA) holding Walker, Jodie, Jesse holding Ellie Reese)

Tuesday, March 11, 2014

Eli's Before, His During, His After.: Meeting Cambrie

I have sat here for the past hour staring at this screen, not sure what to write or how to start this off. I've deleted and added and deleted and added. You know what? 

I'm starting fresh. 

I was going to give you a run-down as to what all happened. But right now, I'm just going to start off by telling you what is on my heart. 

Baby Girl Maine has changed my life. This is the best summary I have for you. 

I swore after 9/11 that I would never fly to the northern states. Not that its relevant, but I've always felt as if the south was a safe-haven. Knowing that one of our connection flights was in Washington, D.C., I had my fears. But ultimately, once on that plane with my little family, all anxieties subsided. We were on our way to hold a little girl who held the only living piece of my son. And that's all that mattered. Outside of my family's safety, I had nothing else to lose. 

From the moment we came down that escalator to see all of Cambrie's family and friends waving posters and balloons, yelling as we came down, nothing mattered when Kiara immediately handed Cambrie to me. Everything became silent. There was no yelling or travelers. There was not a distraction in the room. I just felt overwhelmed with faith, full-circle. I've never felt what I felt last Wednesday. 

Actually, I doubt I ever feel it again. 

But my heart was joined with Baby Girl Maine's heart, which was also joined with Eli's. It was there that I felt liberation. True liberation (Thank you Regina, my wordsy friend!). Liberation to the point that every cry, every outburst, every sleepless night, every luncheon with my son at his graveside, every speech, every fear, every fight that I have felt for 4 years straight all came to an empty point of no more. This is what true love was. This was true liberation. This was the feeling of true relief and joy. 

Cambrie is healthy and living. And he had a hand in that. One special little girl in this world has him. And he resides in Cambrie. There is no other greater joy that I can feel ever again than how I do right now to know her. 

How blessed we are to watch her grow up into a young woman. 

My life will now be able to move forward in a positive direction spiritually and emotionally. I no longer look at Eli's photo in disbelief or shame that he was ultimately removed from support based on our own decision. But instead can look to it as a "Job well done, my child." 

That's how I feel. I look at Cambrie and know that Eli did a job well done. More than any of us can accomplish in our own lives. And the greatest achievement here is that he had a life of no sin and no regret. MY GOD is an awesome God. He moved me in and out of the storm to plant me here at the end of this journey. He has opened my eyes to a greater worth and fulfilled promises. 

And here she is. 

Wednesday, February 26, 2014

A Box for Cambrie

Last week we enjoyed a family vacation to Durango, Colorado with 2 other couples from our church small group. It was a first for us to go there. And another first awaits us one week from today as we will be the farthest north Jesse and I have ever been: Maine.

And for very good reason: to meet the little girl who holds a piece of Eli's heart.

We've had 4 weeks to prepare for this trip but there has really not been a way to actually "prepare" for this type of meeting. We've dreamed of this day for 4 years, never really expecting the opportunity to arise considering how rare this type of meeting is.

In December, just finding out that the deed was done; the surgery had taken place and that there was another human being out there in this world that was saved because of Eli was all the news we needed to move on. We didn't expect anything more than that. We were actually quite blessed to even have had that news.

A friend of mine asked me yesterday if this meeting with Cambrie and her family in Maine would 'set me back' in regards to my healing process after Eli. My immediate and confident answer was "No". Absolutely not. Because? We never wanted his death to be in vain. We always wanted to know that purpose and that it was 'done'. Definitely not a set back.


Instead, this is a blessing. Christ has carried our faith through this to the very end. For that, I remain thankful.

In my small attempt to 'prepare', Jesse and I pulled open Eli's box. I knew there were things in there I wanted Cambrie to have. It took me several days to get ready to open that box. That box sucks the breath right out of my body each time I open it. And that makes a handful of times its been opened, mainly to put things into it. But Sunday afternoon, we did it.

We opened it up, laid everything out. It was quiet as we looked through 4 years of articles, keepsakes, things I had held on to for Walker one day. Things I had hoped to give to his recipient(s). It was quite a healing experience for us both. It took about 2 hours to go through the box. But ultimately, a small pile was made to go into a special little box we purchased for Cambrie. Maybe this is something she will appreciate about when she gets old enough to know what happened.

I held this little guy so close internally to my heart for 8 long months and prayed over him each day. And then for 5 days I did the same after he was born.

Now, Cambrie is the one who was chosen to carry him with her closest to her heart.

Organ and tissue donation is such a gift. Not only was he a gift to us, but he has gone on to be a gift to Cambrie and her loved ones.

This quest certainly has not set me back ANY. Its quite the opposite actually. It has reaffirmed to me that he was fearfully and wonderfully made. He was perfect. And perfect for Cambrie. How blessed we are to be the family who gets to watch her grow into a young adult. We are starting this venture as Cambrie just turned 1 years old. A lifetime of memories awaits our families who have been blessed by 1 little boy. Its an honor to be called Eli's momma.

The work that Cryolife, ARORA (Arkansas Regional Organ Recovery Agency), New England Organ Bank, and Dr. Quinn and his assistant Lori have put into our trip to Maine has been spectacular. A photographer friend who has done volunteer work with our I Can! Arts and Resource Center in Arkansas is also volunteering her time to tag along to Maine to capture the meeting through photography. We have hired a videographer to work with our own Tyler Tarver to create a part II testimony video to our first one (you can see it here: ). This whole venture will be incredible.

I tear up on the thought of this. Several times a day I tear up when the thought comes across my mind. I'm tearing up now as I type. I don't know what I'm going to be like by next Monday....

Can I also share how amazing people have been? One of my fellow Molly Bears momma's sent me this bracelet she ordered from Etsy to give to Cambrie. And she also donated a 2-night stay at the Marriott for the photographer who is traveling with us. And a dear friend of ours who has been with us from the start of Walker and Eli's pregnancy is offering to assist us in our rental car. We've paid for our plane tickets which was quite a chunk of money but I can't begin to tell you all what this assistance means from the bottom of my heart. I cried long and hard yesterday knowing so many people are actively working to make this perfect. They are dropping their own time, their families, their lives, to make this happen. I hope some day we are able to repay each of you in some way.

To Cambrie: Your box will travel in our laps on the flights to you. It is an honor to give this to your momma for you. My prayer is that you know that you have your very own guardian angel who beats away with you each time you breath in. I hope you know that we thought of you when we took him off of support. We thought of you during his last breath. You have given us peace and we couldn't have asked for more than this. Thank you Gadbois-Cates Family. We love each of you.

Monday, January 27, 2014

A Heart the Size of Maine

53 months...

53 months since we said our goodbyes. 53 months we have woken up to our life-long reality of guilt, prayers, talks with God, sleepless nights. Endless hope...

53 months of finding our real, and consistent faith in Jesus Christ, reviving our marriage, and welcoming a rainbow baby. 53 months of being a part of some amazing state and national projects in his name. 53 months of meeting some very amazing people, welcoming new life-long friendships and relationships into our lives, & the painstaking task of having to let go of a few bad ones... 

It was about Always believing something wonderful was about to happen... 

And it did. 

It finally did. 

I've never loved math. Nor math problems. Actually, I've always been terrible at math. So-much-so that I almost was not able to graduate with my bachelors degree; I was just that terrible with math.

But this equation makes me love math. And this is what would make me understand whole-heartedly: 

Baby Girl Maine was born on January 12, 2013 in Maine. Among other things, she was born with a narrow aortic heart valve. She would be the recipient of Eli's aortic heart valve on January 14, 2013. 

Thanks to the help of Cryolife & ARORA (Arkansas Regional Organ Recovery Agency), we were told on December 11th, 2013 that Eli did indeed, save the life that God intended him for. The tears flowed. Our hearts raced. This momma hadn't cried that hard in 4 years. 

The weight of the world had been lifted off of these very tired shoulders. 

Here we were, about to move on to the next phase of life. We were 2 weeks away from climbing onto that airplane to Pasadena, CA. to join Donate Life America at the Rose Parade for the Donate Life Float. We had less than a year left to know if his valves had been placed into another baby. My hope was fading by the day. But God knew my heart, my pleads, my desperation of knowing that we made the right decision. I wanted it so badly that my heart yearned to have Eli back. If he wasn't able to save a life, then why did I let him go? God knew. He knew Cambrie long before she entered this world. And He guided our hearts to make that decision for Cambrie in mind. 

We thank God for Cambrie. 

The relief is very surreal. I have slept longer and harder in the past week than I have in 4 years. 

I don't guess I've realized how much this effected my days. But I finally feel like my peace with this situation has finally set in. Cambrie's mom, Kiara, and I have spoken a few times and we have gone each day texting each other and sharing photos and thoughts. The commonalities we have brings me to think that we'd be friends even outside of this situation. And let me tell you, that's food for my soul. 

We are in the works with the surgeons office, WGME CBS 13, ARORA, & Cryolife to set up the meeting. We are looking at possibly flying up to Maine in 5 weeks to meet the baby girl who holds a piece of our hearts. 

....and a piece of Eli's heart. 

Trust in the Lord with all your heart and lean not on your own understanding;
in all your ways submit to him, 
and he will make your paths straight.   Proverbs 3:5-6

To be continued.

Friday, October 4, 2013

Our Chapter is Ending...

 When we began Team Eli in 2010 shortly after Eli's passing, we had one goal in mind: to raise money for a bronze statue in memory of Eli to place at the new upcoming I Can! Arts & Resource Center, an activities center for special needs children. We had an opportunity to make his passing more meaningful for our grieving process. To someone who hasn't buried a child, it may seem a bit complicated. But you have a drive to find the only good thing that could come of a tragedy.

In 2010, on Walker & Eli's 1st birthday week and 1-year anniversary of Eli's passing, Project E.L.I. had its state premier. A video produced by local name, Julie Mayberry, it has now been released to over 2,000 nationwide OB/GYN clinics. We also found out we were expecting another child on Eli's 1-year death anniversary, quite a surprise to all. A seemingly flawless pregnancy that was just enough to put us at peace with the situation given the day we found out: 8/8/10.

In the past 4 years, we have spoken at bereavement conferences, traveled and spoken for Donate Life Arkansas, hospital inservices, served on a number of hospital panels, been active with the March of Dimes. We now serve on the UAMS NICU Family Advisory Committee & March of Dimes Board of Directors. We have raised over $10,000 in Eli's name for various charities, the biggest being the I Can! Arts & Resource Center, in which holds our heart forever. The void we have when we look into Walker's eyes will never be filled. He's 4 years old now. He's in the age where he's beginning to understand and ask questions. Its that dreaded age of understanding that I've put my brakes on for since the twins were born. It's definitely just part of the process. No one can fix it for us. This is what God has set forth for our family and we just pray that someone, somewhere in the past 4 years has been positively impacted by Eli's name, his life, his story, or by Walker's precious personality that yes, life does continue on.

Eli's quilt square now sits on one of the Donate Life Arkansas/ARORA quilts. We feel very connected to ARORA and some of the staff members there. We pull thru each day knowing that Eli's life, although short, is indeed a gift out there. Much of our peace today comes from his gift of life donation. 

(Fall 2010, UAMS presented a genetics inservice on Eli and Spina Bifida in Las Vegas, NV.)

In 2011, our dear friend Crystal Goss founded NESS Bags . Part of her proceeds from her "Eli" bag go to the Project. E.L.I. Documentary to keep DVDs in production. 

 The beginning of 2012 brought walls up at the I Can! Arts & Resource Center. And in this project, our family was brought out to 'christen' the walls with our favorite bible verses or whatever we wanted to write on it. Our spot was picked out by Walker and is located in the dance studio part of the center. Definitely something we'll always treasure. Our verse:

Every good and perfect gift is from the father above, coming down from the Father of the heavenly lights, who does not change like shifting wind.  -James 1:17 

We believe that Eli was perfect. Humans say he was 'imperfect' because of his spina bifida. Society says its ok to abort our children if a malformation is determined in-utero early on in our pregnancies. My God says its a life no matter how small. And Eli was perfect formed, perfectly made. He changed our life. Our arts center had its grand opening in June 2012, where we also launched Eli's Garden out front. 

Eli's Garden is located in front of the I Can! Arts & Resource Center in Little Rock, AR. It is enclosed by engraved bricks of other babies/children who have passed away too soon. This is a visual area with benches, beautiful trees, green grass and is connected to the current soccer field for special needs children and buddies. In this one spot of the city, no parent has to be fearful of their child not fitting in. No child is left behind. EVERY child matters at the ICARC. 

Fall 2013 brought the March of Dimes Arkansas Signature Chef's dinner where we served as the Ambassador Family to honor Eli & Walker's life. We were surrounded by great chefs, wonderful family & friends, and some of our medical team members for the twins. It was an evening full of joy as we were able to share their story and once again, say his precious name to all who would listen. That night was for Eli. You can view our video testimony produced by the March of Dimes producer, Tyler Tarver, here:

It was at this point that Jesse and I were really struggling with some decisions. Decisions to help us move forward and what we wanted within our family unit. And Jesse accepted a job out of state, away from everything we've ever known. But I knew that if he never gave it a try, he'd never know what that was like. It broke our hearts to venture out away from our families and away from our son who's grave I kept up nearly every week. But we felt God's pull to do it. We were beginning to feel smothered and needing some refreshing. Let me tell you, it was a smart direction and I owe our God a lot of thanks for enabling us to be able to pull away from all things. I truly believe it's revived us and we have found a whole new outlook on a few things very important to us and our marriage, and especially our children. We love each other and we love our babies. We will get home soon. But in the mean time, we're thriving in an environment that we are able to close another chapter and make a bigger decision.

During our transition out of state, I became involved with a non-profit called Molly Bears. Molly Bears makes weighted teddy bears the weight of the baby (12 months or younger) whom has passed away. I'm finding it as a healthy release and wonderful way to honor our son. I'm fulfilled with this non-profit and hope to volunteer for them for a very long time.

(Winter 2013 - Arkansas State Capital - Spoke to lawmakers for the March of Dimes)

So now, we are looking at the biggest Eli honor yet: The 2014 New Years Day Donate Life Rose Bowl Parade float. Eli will be one of 75 floragraphs from all over the United States on the float. Eli's photo will be shown nation-wide and we are being flown to Pasadena first hand to witness something so incredible. We could not be prouder right now. But this is also a point to where we will close our chapter. After the Rose Bowl float, we will venture on a new McGinley chapter which will need a lot of prayer. I will need to refocus my priorities on this new chapter. It will never be that we've forgotten Eli or have given him up. But with Eli's angelic blessing and the help of our families, we will carry him with us. Of course this blog will not end. I will continue to blog on this new journey, as I know that's just as important as our original McGinley Baby Journey that started in 2008 as we fought so hard to start our family after our first miscarriage. 

Jesse & I just find that this is a point of new beginnings for us and a chance to move forward. Our Team Eli tshirt fundraiser thru the 21st of October will be our last Team Eli tshirt fundraiser. If you would like to order one, please go to . 

You know, there has been a lot of support from you guys, a lot of prayer, and a lot of new friendships that have blossomed from this journey of 5 years. We have lost a few great friends thru this but also have gained life-long relationships with people that we would have never met had it not been for the infertility or loss of Eli. Granted we would give anything to bring our baby boy back, we couldn't have asked for a better way to grieve our way thru this. And in the end, we have been virtuous and stronger people. Thank you all for all of the love, support, and help within the past 4 years. 


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