Two years ago today, we were preparing to transport our one-week old son on ECMO to the heart catheterization labs to determine if his little lungs were capable of supporting a new heart. Today was the day we placed Keegan’s life in the hands of our Lord for better or worse. Today was the day we would find out if we could hold out hope for a miracle or start preparing him to go home to Jesus. We began the day unsure of our future but confident that the hands of our God were stronger and surer than ours could ever be. We ended the day with physical proof of that faith, watching the most beautiful heart beating unassisted through an open sternum in Keegan’s chest, seeing the love from another’s loss save our only son.
“I know that you can do all things; no plan of yours can be thwarted…You said, ‘Listen now, and I will speak; I will question you, and you shall answer me.’ My ears had heard of you, but now my eyes have seen you!” Job 42:2-5
On this day last year, I wrote of my hopes for completely normal days for Keegan. Now I know that “normal” can mean many things. Our normal includes medications, syringes, machines, masks, tubes, doctors, and therapy. Our normal means going nowhere but home and the hospital during the winter. Our normal is ERs, ambulances, an inpatient stays at the drop of a hat. Our normal is walking into the ER, floor, or ICU and having everyone say, “good to see you,” rather than “sorry you’re here.” Our normal is celebrating our son’s second birthday knowing that he has already spent almost 1/3 of his life living in the hospital during 10 inpatient stays, had 2 major surgeries requiring heart-lung bypass, spent 6 days on ECMO, has over 11 surgical scars, and had general anesthesia over 28 times. Knowing this does not make it okay. It will never be okay, but it is what it is. And for Keegan, it’s just life. Just life. And he loves it.
Last year, I wrote of my fears of not knowing how Keegan’s first months affected him and what the future would hold. After over 9 months of inpatient days in the last year and seeing first hand what rejection looks like, I still have fear for what the future holds, but I have faith we can get through it. Today, I sit at Children’s once again with Keegan, thankfully preparing to be discharged. I pass by the CVICU where we waited and prayed. I watch other families experience the joy and despair that is ever present with a “heart kid”. As I chat with doctors, nurses, and technicians, I realize they are now my friends, and they know my son almost as well as I do. There is comfort in the familiarity, but it doesn’t make it any easier. Keegan always surprises me, and this year, I pray for more surprises. But I’m no longer naïve enough to think everything will be fine. The longer we are blessed to have him, the more I realize how strong he truly is. The Lord made him knowing his broken path, the many struggling hills to climb, the twists and turns, and the beautiful views. He knows the innermost workings of our son’s body, and that sometimes has to be enough for us.
“We have a Father in Heaven who loves us specifically and gives us things to do and, because he loves us, will cause us, at times, to have our souls stretched and to be fitted for a better world by coping with life in this world.” - Neal A. Maxwell
Last year, I took this opportunity to tell you more about Keegan’s first week. This year, I’m humbled by the story of a very precious angel, Johnston. In the last few months, we’ve been blessed to get to know Keegan’s donor family, Kevin & LaMonica and their new son, Kingsley. They are such gentle, caring, and strong people and are cherishing having handsome Kingsley to love. But this time two years ago, their loss was unimaginable. Johnston, their first born son, had stopped breathing at home when he was five days old, the day we listed Keegan for transplant. Although Kevin was able to revive him, Johnston had suffered terminal brain damage. Two days later, they made the choice no parent should have to make and decided out of love and selflessness to allow Keegan to live by donating Johnston’s heart. The boys were less than six hours apart in age, and Johnston was a mere pound bigger than Keegan. They were the same blood type. Firstborn sons, they were a match in so many ways. Where Keegan was broken, Kevin, LaMonica, and Johnston made him whole again. Two years ago today, they CHOSE to face my greatest fear in this world by sending Johnston into an operating room, knowing he would not come back to them. And they did it with more grace and love than I ever thought possible.
Today, I know that Johnston continues to watch over Keegan, giving him strength and hope. I know he watches over Kingsley and his parents. I hope that we make him proud. I hope he feels the love we have for him. I know that he is celebrating in every milestone Keegan reaches, and I know that he is holding Keegan’s hand with every burden. More than anything, I know he is whole, healthy, and consumed with the love of the Lord, Jesus Christ. If Keegan meets Johnston before we do, I know that his best friend will welcome him with open arms. What peace that brings to us.
“Jesus turned and saw her. ‘Take HEART, daughter’, he said. “Your faith has healed you.’ And the woman was healed from that moment.” Matthew 9:22
As another day in the hospital dawned this morning, I awoke frustrated and disappointed. Yet again, I could not heal my son. I could not make the pain go away, and I still didn’t have an answer to give him peace of mind as to why he must fight day after day. As a mother, I can think of few things that hurt more than knowing you’ve failed to protect your child. But this year, my faith has been renewed. The promises the Lord has made are more clear to me now than ever before. Keegan continues to shine as a beacon of hope in a broken and battered world. His smile can heal the most wounded of hearts. The face of God shines in him, and I don’t know that I could ever be so blessed. I have met the most wonderful people in the last two years through Keegan – children with such courage and faithfulness that the strongest man would feel weak in their presence; parents with strength and dignity tempered by pure love as they continue to fight for their children. Doctors, nurses, therapists, and technicians who care for children day after day as if they were their own. It is life I didn’t want and never imagined, but I couldn’t have it any other way.
We love you, Keegan. Keep fighting, Bug, and sharing your story and love with the world. And this time next year, we will once again stand in awe of you, our greatest blessing.
“On that day, you will say: I will praise you O Lord…Surely, God is my salvation. I will trust and not be afraid. The Lord, the Lord, is my strength and my song…Give thanks to the Lord. Call on His name. Make known among the nations what He has done, and proclaim that His name is exalted. Sing to the Lord, for He has done glorious things! Let this be known to all the world!” Isaiah 12:1-5
**New pictures are up. Please click HERE to see them. Thank you.