Reflections from Johnny's Parents

I shared the following thoughts at Johnny's funeral earlier today.

Lea and I decided that I (Dave) would speak for both of us today.

Tears are so good, they are so healing, and they are helping us so much right now.

Thank you all for coming today. It means a great deal to us that you would join us today to reinforce the value and significance of our son. His life may have been brief, but his influence was very significant, and we are forever changed by him - we will never forget him. Some of you may never forget him. Some of you may never forget today. And that just further validates how important he was to everyone, and especially to us.

Life with Johnny started almost exactly a year ago, when Lea told me the exciting news that she was pregnant. Many of you know that Johnny overcame great obstacles during Lea’s pregnancy. At a doctors appointment on December 21st the doctors gave him no chance to survive due to some complications that had been identified on his 20-week ultrasound two weeks earlier. It was a difficult Christmas, but many, many people prayed for us and held out hope for a miracle. And it happened. On January 3, another ultrasound revealed that the miracle we had hoped and prayed for had been granted…..Johnny’s condition had reversed. The doctors were amazed. I’ll never forget that day, they were more interested in Lea and her condition, we had to plead with the nurses to do an ultrasound so we could see our son maybe for the last time, and we saw right away that things had changed. The doctors entered the room, and confirmed what we had seen. Our baby was doing better. He might survive and go full term.

Two weeks later, on January 17, at another ultrasound appointment, he was diagnosed with a heart problem that would require a series of three surgeries after his birth. More challenges on the horizon for us and for Johnny. The roller-coaster ride continued. We tried to remain positive, kept praying for him and for us, and tried to learn about the series of surgeries he would have, that many kids come through okay and do quite well. I see Johnny’s cardiologist here today, with us for Johnny’s funeral. It’s amazing when you have one of these heart kids, I think our cardiologist knows Johnny better than anyone after Lea and I. The pediatric cardiologists, the heart surgeons, and the nurses that care for these kids are phenomenal people, and they are saving babies every day. I can’t thank them enough.

And then there was his birth on April 20. I will never forget that night and all the events surrounding his birth. We barely made it to the hospital. It was incredible. He fell into the hands of his dad and our doula, with no doctor present. My first moments with him were running down a hall with a nurse that had him wrapped in a blanket, searching frantically for a vacant room to get him stabilized. He was beautiful, but within a few hours we knew that his heart had not been healed. 11 days later, he had his first heart surgery.

Lea and I were talking before we came in today. Lea said, “You know, that birth, Johnny did that for you, because he knew you would think it was exciting.” And she’s right. I loved everything about it, being so involved, the drama. I will never forget it. Lea told me that his birth was my style, not hers, and it’s true. Thank you, Johnny. It is a beautiful memory.

Johnny recovered from that first surgery, and the homecoming was a joyous occasion. It was wonderful. We finally had our baby boy home with us. It was wonderful to settle into life at home with Johnny.

There has not been a day since that early diagnosis when Lea was pregnant when we have not wondered how long we would have Johnny with us. We often thought in terms of years. How many years? Five? Ten? When you have a baby with a challenged heart like Johnny’s, you tend to live this way at times. Although the original prognosis for his heart surgery outcomes was fairly positive, he always had us on the edge of our seats. Lea has often had thoughts that Johnathan was never really hers. To her, he has always been God’s child, more than her baby boy. She has had to hold him lightly these last four months, faced with his mortality every day. She cared for and loved him fiercely and passionately all the days he was with us. I have had to witness a mothers anguish far too many times, through his pregnancy, his first surgery…things I have witnessed have sometimes broken my heart. But each time Lea has emerged more determined to love her son as only a mother can do. I am so proud to have done this with Lea, to have shared in this journey with this woman. She is fantastic with our kids. She was with Johnny, she always will be with Juliana. I so much appreciate you, Lea. Thank you, I love you.

And now, here we are, at a place I never wanted to be at. Our little Johnny, lost last Sunday. I want you to know that Lea and I, we have complete peace that he is in a better place, in heaven, with no suffering, immeasurable joy, and a perfect heart. Our grief is for us, for Lea and I, for Juliana, for our loss, and how much we miss him. We miss him so much.

The question could be asked: why did his journey evolve this way….he made it through what many believe to be a miracle pregnancy, only to be lost to complications from heart surgery 4 months into his life. Some may even ask if the pain and difficulty we are going through now was worth it.

Our answer is an unequivocal “yes”. His four months was a great gift to us, and gave us the opportunity to know and understand him in ways we never would have been able to if he would have died in Lea’s womb. His sounds, his personality, the color of his hair, the color of his eyes, his long fingers and toes, his big feet, how he liked to be comforted and held, how he responded to his sister so beautifully……four brief months to know and love him. And in return, he provided so much to enrich our lives. He was at such a great place before this last surgery. He was smiling on a regular basis. He enjoyed playing with some of his toys. He had some great interactions with his big sister. The last couple of months were very special for us, having him home and with us, memories we will never forget.

I have no doubt that I will be a better man, a better husband, and a better father because I have been blessed to be Johnny’s dad for four months. He has given me so many gifts during our brief time together. Lea and I both believe he may have given more to us than we gave to him, even though he needed so much care like any newborn baby does.

Johnny gave me the gift of experiencing the joy and pride of being a father to a son. Those of you that know us know how much I love Juliana, but there is something different about having a son, and for four months, I experienced this. I loved it. He allowed us to experience all the awe and wonder of holding a little baby again for a second time. He gave us the gift of the simple pleasure of holding your sleeping baby in your arms while they drift off to sleep. And he brought out a personality and tenderness in our little Juliana that would not have blossomed any other way – for four months, she was a wonderful big sister. We never could have imagined how much we would have enjoyed seeing our children together. And now this is a central part of our loss. Juliana, in her own special way, grieves with us. She woke up at 5:00 am this morning, crying, sobbing. She couldn’t tell us why…we know why. Lea held her, comforted her. We are navigating this path with her, helping her grieve as she needs to, and we know we will get through this, together.

Our thoughts, perspective, and relationship with God have been amplified to degrees we never thought possible through this experience. We seem to have more questions then answers these days. We have experienced anger and frustration with God as never before, and at the same time we have experienced periods of calmness in the storm that can only be explained as God walking with us, giving us the strength to face the adversity and difficult circumstance we are in, that in the past we would have thought unbearable. Still more questions than answers right now, but we continue to ask the questions, maintaining a dialogue with God, and we believe that’s what is important. We have not abandoned God, he has not abandoned us. We continue to talk about this with Him.

Many have followed our story on our family blog. Those that know me know I would be the last person to share so much of our story in such a public format. But way back in December, between Christmas and New Years, when things looked so grim for us, I believe I had a directive of sorts from God to begin a record of our journey. I was on a long run on a cold winter day, sorting out my thoughts, grieving over what was happening to our baby, when I had a strong and clear thought about Johnny. The message was two-fold – there are many chapters left to our story, and his story needs to be told. From this, the blog began. And now that Johnny is gone, every word, every thought, is so precious to us. We are so thankful for this record of him and our family’s journey these past several months. I am so thankful for that day, that run, those thoughts, that I credit to God.

Johnny was with us here just over four months. 127 days as the candles behind me signify. He made the most of his days, and greatly enriched the lives of his mother and father, his big sister, his extended family, and many, many others. Now we’ve got to pick up the pieces, and it’s our turn to decide what we will do with the rest of our days.

Johnny, we love you so much. We will miss you so much. Thank you so much for the gifts you gave us and the lessons you taught us. You are an amazing little baby. We miss you dearly, and we will never forget you. Compared to an eternity, our lives will be as brief as yours was. We hope to see you soon.