How Do You Measure a Year

I am very thankful that Tammie is sharing her story about her daughter and her family.  I have learned so much from her and she inspires me beyond belief.   Her strength is incredible.  You can read more from her on her amazing blog (The Write Path on the Journey of Grief and Hope) and reach out to her through the comments today and her email ([email protected] ).

Five hundred twenty-five thousand six hundred minutes.

Five hundred twenty-five thousand moments so dear.

Five hundred twenty-five thousand six hundred minutes.

How do you measure,

Measure a year?

This was the theme for the first anniversary of my daughter’s double lung transplant. She received her miracle of life on April 28, 2017, after a four year battle with two terminal diseases. We measured those precious moments in snap chats, in friendships, in summer nights, in bedtime kisses, in school days, in birthday parties, and fireside s’mores.  Parenthood; there is no rule book, there is no playbook even when things are “normal,” but you know how it is “supposed” to look. The sleepless nights as a mom of a newborn are expected, the sleepless nights at a hospital, watching your adult daughter so close to death are unfathomable. But that is where I found myself on July 31, 2015. I watched her sleep, still in recovery.  I stood there with a picture of her lungs, the surgeon had thrust in my hands. I had silent tears, but on the inside, I was screaming. How do I tell her? The doctor just said she is terminal, possibly she could have a lung transplant. These words seem so foreign to me, and I stand there, and I watch her start to stir and realize I am about to say words that will forever change her life.  For four years we fought these diseases that ravaged her lungs, as her friends were graduating from college, getting new jobs, new cars, and living life, she was pulling around an oxygen tank, hanging a handicap sign on her mirror so she could park close enough to a store that she could make it safely inside. They say life can turn upside down; this felt more like a snowglobe. She had just had her second child, a sweet baby boy; she loved being a mom.  We were thrust into a world that every time we felt like we could stand, it would get all shook up. So many trips to the emergency room, ambulance rides, life flight, holidays, and birthdays spent in the hospital. Yet, we still had hope. Madi inspired so many as she held onto her faith, remained optimistic, and put her children above everything. Her life motto was, “Life doesn’t have to be perfect to be beautiful.” She lived that out with all of her being.

How do you measure a year?

2017 was measured in miracles, breaths, gratitude, quiet moments of reflection, and new beginnings.

 On April 27, 2017, we got THE call. We had prayed for our donor family from the time Madi was put on the list. We knew that our only chance at life came at a price no parent should have to pay.   We were on our way to the Cleveland Clinic at 2 am. Madi had her praise music on and was singing the entire time as we held hands. As we saw the Cleveland skyline approach the nerves settled in, and we began to pray, but there was also a sense of excitement that she was going to get her life back, she was getting her second chance. At 7 am, the morning of April 28, we said our goodbyes and they took her away. We were determined to send her away with hope, we did not cry but prayed together as a family, and after the traditional second and third goodbye, she always needed, we watched the doors close, my husband and I turned to each other, and then we cried. Finally, at 9:40 pm, we were allowed to see her. We were speechless, the only language we possessed at that time were tears, and those tears said it all. We were grateful to have our daughter back, and we had real hope that it would be for many years to come. It was, indeed, a miracle. 

My friend Jacki sent me this text, “I sit here now reflecting on this day wide awake as I pump milk for my son. Funny, that its an act that I did once consider selfless to a point as I would do anything to provide him with the best start to life… as would any parent. But, after today, it doesn’t hold a candle to what I have now witnessed to truly be a selfless act of kindness, and a parent’s love for their child. Now, I am absolutely blown away by the selfless act of organ donation, having seen its effect on someone I love. Don’t get me wrong; I thought it was pretty amazing before, but wow!

Furthermore, to watch the love of a parent for their childlike I have with you for Madi, well, to be frank, it’s inspirational. Over the last 3 years, I have watched you be the advocate, the rock, and the unconditional emotional outlet for Madi at any expense to yourself in an effort to get her well. Thus, today, it was nothing short of an honor to share in your joy as your amazingly strong daughter got her life back. God sure knew what he was doing when he made you Madison’s mom, and he sure did set Adilene up to have the most amazing 2 role models the world has to offer in a mother and a grandmother. My heart aches for the parents that lost their little girl at the tender age of 16, but I have to believe that if they could have experienced half of what I did today it would help ease their pain. What an amazing world we live in that life can literally be created from death through selfless acts of kindness and the wonders of modern medicine. Bless you and your family, friend, Madison is THE lion in a field lions, and a beautiful new life lies ahead.” 

The two weeks we spent in the hospital post-surgery was exhausting but full of sacred moments I will treasure forever. The most precious memory came four days post-surgery, Madi was desperately trying to tell us something, and the nurse finally gave her a pen and paper, and she wrote over and over “I love you.” I posted on my facebook; it was as beautiful as her first cry; it is framed beside our bed to look at every morning and every night.

How do you measure a year?

2019 has been measured in pain and sorrow mixed with tears of joy, riding bikes with no training wheels, the first day of school, birthday parties, anniversaries, anchors of hope, deepened relationships.

Madi challenged us to not be sad for the rest of our lives and to give her children the beautiful memories she had growing up.  She set the bar high when it came to finding beauty amid chaos and sorrow. The most recent memory of her doing just that is when her son, Brenton, turned four.  She had been in the hospital for a week with a painful GI tube in her nose to pump her stomach, an ongoing complication of surgery, she was released and within two hours of being home had a Captain America birthday party for family and friends.  That challenge has been a gift to me, on my hardest days, I remember her faith, her drive, her love of others. When Brenton rode his bike for the first time without training wheels, I cheered and I cried. When the kids had their first day of school, and for the first time ever, they were picked up at their dad’s house, I cried and at the same time was so proud of how strong they are.  We are blessed with people that have come alongside us to support us actively, and those relationships have deepened. They say you may forget who you have laughed with, but you will never forget who you have cried with. We have felt the anchor of faith hold us steady when the waves of grief threaten to overwhelm us. Madi wrote this in her last blog post.

“However, it still pains me today to think of my family having to attempt to swallow that possibility as well. I circle back to anger. Anger with Him (God) because I begin to feel abandoned, forgotten, and insignificant. Sometimes my thoughts and conversation with God will continue, and I wrestle with Him some more. Other areas of grief come to mind as well as my anger about the many complications post-op comes into play. But, usually, at this point, He reminds me that He was there, is there, and always will be there. The scripture speaking about how he never wastes a tear, that our suffering isn’t for nothing, brings me comfort. My mind begins to flood with all the countless times God was so clearly evident. Finally, I get a sense of relief. While my questions are still unanswered, I do “come to grips” with things and hope that something bigger is coming. Something that’ll make the pain and this whole thing worth it. I need only to be patient and obedient.”

The last sentence she ever wrote on her blog is “I HAD A DOUBLE LUNG TRANSPLANT…one day the end of that sentence will be completed, and I look forward to seeing what God plans to finish.”  Madi girl, that sentence isn’t finished, you continue to inspire others with your strength and faith.  Your children bravely live on with your power and love so evident in their young lives. God has continued to unfold your story in all of us.