Friday, February 20, 2015

The "3rd" Child Resolve

As Jesse & I embark on our 30th week of pregnancy with 'Charlee Kate', I felt the need to look thru Eli's photos tonight. 

I'm not sure why. I think I may know what triggered it. But sometimes its just good to look through them and line my eyes with the silhouette of his precious and perfect crooked little legs and shiny head. All the fine details that I was robbed of. 

But I need to get another sentiment out there. Please remember Eli. Remember him when referring to Charlee Kate as our '3rd child'. 

Something I have been harboring for weeks now is the sting I feel when lighthearted conversations between my friends, family, and I as Charlee Kate's delivery gets nearer ends up in the jokingly way of saying "3rd child problems" (3rd child gets the hand-me-downs, 3rd child doesn't get new stuff. You know...). 

I would never correct anyone, as I find that embarrassing myself. But my heart definitely hurts as my mind and soul leave that conversation immediately after that is presented...

  • Eli was our 1st born twin son and 
  • Walker is our 2nd born twin son; (born just 2 minutes apart)
  • Ellie is our 3rd child, our first daughter. 
  • Charlee Kate is our 4th child. Our 4th miracle

I know our loved ones mean well. And Jesse & both love lighthearted conversation more than the next person. We even giggle when he comes home and tells me people's reaction at work when he tells them his wife is expecting his 4th child

But lets refer to '4th child problems'... Whatever those may be. I'm sure its twice as bad as "3rd child problems". But what's worse than 4th child problems is a wrong number that hurts my heart and doesn't tell the truth of the matter. #irreplaceable

I swear I'm going to buy this off of Etsy soon and hang it by my front door for all to see: 

Wednesday, December 31, 2014

"What Our Family Photos No Longer Hide" Blog Response

Cambrie, left, with her parents and brother. Cambrie received Eli's aortic heart valve in January 2013. They joined us for Thanksgiving in Arkansas a few weeks ago. 

Its no lie that the truth hurts. Even when it comes to empty photographs. A normal family with each of their precious children in the photo is the norm and even those parents would never fathom the thought of a death of a child and certainly not what to do with your family photo in midst of a life-long tragedy of not having them physically there. 

Sure, people cringe at the thought or possibly at the sight of what we've done for the past 5 years with Walker's twin brother. Some may call it morbid. But those of you who do, please take a moment and think about something: 

Please name the one child of yours who you could live without. 

Go ahead. Name him or her. 

Its not simple, nor is it a pleasant thought, is it? 

Welcome to the realistic reality of moms and dads everywhere who struggle to grieve because they are fearful of being judged. 

For the past 2 weeks, I have seen a blog post circle my Facebook feed amongst my bereaved friends called "Pictures Can Lie: What Our Family Photos No Longer Hide".  Kathy Glow so eloquently talks about the struggles of her family photos before and after the death of her son. I never could find myself to click on this article because I knew it would verify what we've done the past 5 years as being mindful and okay with the truth, where I know some may have said differently of us over the years. I'm pretty certain our choice to celebrate him and not forget him made numerous people scratch their heads at the time. 

I've always been somewhat paranoid of not fitting in or being judged. I've never been the one to really branch out because it was something I felt was right or just because. 

But after the birth of my twins, I found myself. 
I found Jesus. 
And I found a new joy in my sons' lives that I never thought would be possible. I changed. And I'd be darned if anyone was going to take my joy for Eli away from me. 

He was my son. IS my son. And forever will be my son. He is also much more; he is Walker's twin brother. He's Cambrie's donor. He is my first born child. 

His life may have ended earlier than we would have liked. But he certainly was a life-changing gift to Jesse & I from God. We are the ones who have to be accountable for our actions here on earth. 

Forgetting him was not in the cards for us. We prayed for children for so many years. So I'm supposed to move on after we buried him? This didn't settle well with me in that first year after his death. It was not ok. 

Actually, its still not ok. 

Time is eluding this 'shame' that society has placed on parents who lose a child. Its becoming normal for parents to begin to grieve their children, honor their children, and recognize their children. I've witnessed more of this through photography with our work in Molly Bears and through NILMDTS's ministry. Its an honor to be a part of this positive change. 

I never thought that God expected us to place shame on a child who went to His kingdom. I don't think he wants us to turn our back like they never existed. And so we did what made us comfortable: we talk about Eli. We don't keep things from Walker. We have photos in our home of him. His name comes up every night in Walker & Ellie's prayers. And we include his life in our family photos. 

I'm not sorry that this makes anyone uncomfortable. 

Our joy should not be your shame. Its our family. He IS part of our family. And we both look forward to reuniting with him in the Kingdom of God. He's there. 

I'm really glad I took the opportunity to read this article today after all of these weeks. Raw tears flowed as I did because for once, I connected with a momma through words who painstakingly knew my heart and why we've chosen to honor him in our family photos regardless of the thoughts and words of others who saw the 'shame'. 

Kathy, thank you for being a good momma. 
And for making this momma feel like a good momma too.

Our new family photo no longer hides the guilt, the pain, and the truth of a true miracle. I hope you enjoy our new family photo as much as it proves to be true in our lives. 

Seek the Kingdom of God above all else, and live righteously, and he will give you everything you need.   -Matthew 6:33

Monday, October 6, 2014

Its Always a Great Day for a *Rainbow*

Its never been a secret that Jesse & I have always wanted a big family. We weren't sure if this was going to be in the cards for us after our rocky start to parenthood. But our Lord has entrusted Jesse & I with a life, once again. This is something we have prayed and thoroughly considered the past several years as we sifted through the "what just happened" phase of 2009/2010 era. But we are at peace at this point in announcing our McGinley #4 will hopefully make a scheduled appearance at the end of April 2015. 

We have had a few ultrasounds with high risk already thus far into our pregnancy and so far, this pregnancy has come with extremely minor complications (nothing like with the twins or with Ellie). Some may call this pretty flawless actually. We don't really know what that is....but certainly hope it keeps it up! 
We'd love easy...

But most importantly, there has not been one appearance of a hemorrhage yet. THAT, my friends, we owe to the Glory of God. I had hemorrhages with each pregnancy. I blame the large one we had with the twins on Eli's ending condition. For some reason, my blood fights my pregnancies and tries to take them from me. A hemotologist in Dallas diagnosed me with a 4g/5g gene mutation. There's not much research on this condition other than they know its a blood clotting condition. And given that my father died at 36 years old of a massive heart attack, it makes sense that I inherited this gene mutation. But due to the lack of research on what this does to a woman during pregnancy, it cannot be confirmed that this is what caused my miscarriages and also contributed to Eli's complications. 

I have also been hesitant in putting this pregnancy out there because we have several friends who have been trying to become pregnant for quite some time. This makes my heart ache, as we've been there and its such a tough issue to weed through when you wake up each morning. Please know, my heart has been and is with each of you every single day, as I know our Lord and Savior has his precious hand on your heart and situations. 

If you are a praying friend, I ask you to please lift up our situation and pray that this baby arrives safely. 

Before I formed you in the womb I knew you, before you were born I set you apart. -Jeremiah 1:5

Monday, August 18, 2014

UPDATE: Eli's *Other* Heart Valve with CryoLife

Happy 5th Birthday, Eli & Walker! 

In 2009, when we were signing his little body over for heart valve donation, we knew Eli's valves would be eligible for transplant for 5 years. Now today, in 2014, we have located our precious Cambrie (Eli's aortic valve recipient). But back in 2009, 60 months seemed like a lifetime away and I had no doubt there was "plenty" of time for the valves to be requested and used (although I never dreamed we would hear of the outcome and certainly never know "whom" was saved). But for some of our very involved friends, the question has been asked "so what about Eli's pulmonary valve?" and "Will you seek to find that family too?". Well, Jesse and I want to share with you today some very encouraging news regarding Eli's other gift of life...

CryoLife employees releasing balloons to Heaven for Eli on 8/8/14, Eli's "Gift of Life Anniversary". Kennesaw, Georgia

Since our personal involvement with CryoLife and the close relationships we have formed with their team, we have been in negotiations the past few months on the right thing to do if his pulmonary valve wasn't requested by a surgeon 8/28/14 (the expiration date for Cryolife). But our dear CryoLife team had been in touch with a heart surgeon who is excited to use Eli's pulmonary valve for transplant in December in a country not accessible for life-saving pediatric heart surgeries. This program is called "CryoKids". Here is the link to learn more: 

What does this mean? 
Eli's pulmonary valve will be shipping out of the CryoLife facility in Kennesaw, Georgia any day now and will be on its way to a medical facility in the United Kingdom. When the surgeon with CryoKids arrives into the UK in December, he will then take Eli's pulmonary valve with him to the country in which he will be performing the surgery. Word is that we will receive a summary from the surgeon about his surgery after the first of the year. 

Will we search out to know this child?
No. Jesse and I have prayed on this and really searched for God's direction. We feel so absolutely blessed to have and know Cambrie in our lives. We also know that it was a 1 in 100,000,000,000 chance to have actually connected with Eli's recipient. Our heart are very content with the current situation. And with the support of our friends at CryoLife, we have watched this beautiful story transform into somewhat of a miracle in our own lives. I know I've said it before, but how blessed are we to be able to watch this little girl grow up with a living piece of our son inside of her? 

We will equally pray and remember the other baby in which will receive his pulmonary valve. We are very excited to know what country our Eli will be associated with forever. But we only see it as right if we continue to speak on the great things that have been done. And just simply, count our blessings. 

The last few hours of Eli's life, as a mother holding her dying baby boy tightly in her arms, begging him to let go, I just pleaded and whispered into his ear to please just come back to me. Show me that we were making the right decision. Come back to me in that baby or 2 babies that he would save. He has done that, two-fold. December will be another month worth celebrating in our family, all thanks to CryoLife. 

On another bright note, Cambrie's mommy and daddy, Nick & Kiara, will be speaking at CryoLife in October to the staff so that they can hear about the Eli-Cambrie journey from the recipient side of the story. We are anxiously hoping to attend as well to hear them speak for the very first time. They will be flying to Arkansas in November for Thanksgiving and I can guarantee you that the most thankful place in this state of Arkansas will be in this very household. 

Team, if you are reading this, please know that you are making a difference in this little family's lives. Thank you for eating and sleeping heart valves, BioGlue, and vascular tissues on a daily basis. Without you, this momma wouldn't feel like she held the hope of the world in her hands. You are doing a beautiful thing! 

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.