The Holy Spirit inspired us with these words of remembrance for our sweet baby and gave us the courage to share them during his Mass of Christian burial. They are his legacy, his mission, which I will take up and try to live by and follow all the days of my life.
The story of our son John Paul Raphael is God’s from the very beginning, an unexpected blessing that came, I am convinced, as a result of our weekly adoration hour together and my pilgrimage to Our Lady of Guadalupe. (John Paul was conceived exactly 9 months after I returned.) We rejoiced in God’s plan, even as we knew it could be complicated convincing all our children this was a blessing.
As many of you know, John Paul Raphael died from complications of Trisomy 18, a chromosomal condition where every cell in his body had 3 copies of the 18th chromosome instead of 2, making it hard for the brain to communicate well with the rest of his body. We found out about the likelihood of his having Trisomy 18 after genetic testing last August. The tests didn’t say for sure, but we knew the chances were high that this baby we now longed for would not be healthy.
Many professionals will tell you that Trisomy 18 is “incompatible with life.” And while it is true that most babies with Trisomy 18 don’t live very long, we are so grateful that our Catholic faith calls us to go deeper. We loved John Paul before we even heard his heartbeat and while his potential diagnosis was devastating, we knew God was calling us to trust HIM with numbering his days as He saw fit and our job was to surrender to that plan. Surrendering to the uncertainty of our baby’s life is one of the hardest things we have ever done. There could be no plan. We have spent the last 5 months waiting and praying and hoping for a miracle for John Paul Raphael. We know that many of you joined us in that. We love and serve a God of miracles and He is faithful. He hears our every prayer, captured every tear, heard our every plea that He have mercy on us and spare our son. But we are a family, the Leon/Good family, that knows full well that the miracle you get is not always the one that you asked for.
John Paul Raphael is a miracle. He was fearfully and wonderfully made. We are here to say goodbye to our beautiful son, but I want to make sure everyone knows his brief life was FULL of miracles. Many trisomy 18 babies die in the womb. Or have important parts of their bodies that are unable to function. Not John Paul -- a miracle. Our #1 hope all along was to have John Paul born alive if at all possible so we could love him face to face and every time we got to hear his heartbeat, it was a miracle. We watched him grow for 36 weeks, knowing that every one-more-day we got was a miracle. After a dire emergency last Thursday morning, John Paul was born barely hanging on. It was only after Ralph baptized him with the holy water that we brought, that he whimpered and gave us signs of life. A true miracle. John Paul was able to breathe on his own with just a little oxygen, and could drink and swallow and fill his diapers. A miracle. His presence with all of us, his little cries and the way he held our fingers, how he captured all our hearts in such a short period of time -- a miracle, this beautiful, perfect, holy child. We knew all along that his life could be measured in minutes or hours or days -- we got 28 hours and 10 minutes. But it was total love. He was LOVE and he brought us love and we gave him love... 1690 minutes of unconditional love. We know that John Paul did not suffer and died in the arms of his mommy and daddy, surrounded by family, and listening to us all sing him home. Our miracle.
Many of you have had dinner at our house before and may remember that we end our grace by praying these words from 1 Corinthians: whether we eat or whether we drink, let us do all for the glory of God. That was our prayer for this pregnancy -- whether or not you heal John Paul, Lord, show us how this can all be for your glory.
We know that God formed John Paul from the very beginning and that He has a purpose for his life. And that there is purpose in his death. Our faith teaches us that John Paul, having been baptized and confirmed, is certainly welcomed into Heaven. We can trust he is watching over us and that we will see him again. But we are still on Earth and this valley of tears we are left in -- this sadness and grief we are all feeling, can I make this be for your glory?
I feel very grateful that I have not struggled with WHY. I have been sad and grieving and scared but didn’t wrestle with God over WHY this had to happen to us -- a favorite verse from Proverbs carried us through: Trust in the Lord with all your heart. Do not rely on your own understanding. We prayed this over and over. But I do find myself with this big question now: HOW? How do we do THIS? How can our grief be for your glory? How can we find purpose in our baby boy’s death?
I want to share two thoughts that I hope will bring even more purpose to John Paul Raphael’s brief life. One -- this little boy was so loved. My heart ACHES thinking about the lifetime of love that grew in our hearts for him in just 2 days. His brothers and sisters were so brave and vulnerable in opening their hearts to him and loving him and feeling loved by him. We felt love from every person that came in the room to care for him. The grace of God was so present in the fragility of his life and the nearness of his death that somehow hearts just opened wide to love. Maybe that can be his first legacy: Let yourself be loved. John Paul didn’t have to do a single thing to earn that love or deserve that love. We felt his beauty and purity as a child of God and our hearts responded to the gift of his life. Maybe we can let ourselves be loved this way, by God, by our families, by ourselves: freely and unconditionally and abundantly because we, like our precious John Paul, have a purpose, are a GIFT, and are fearfully and wonderfully made. Let yourself be loved.
Second -- we know that death and suffering are a part of our Christian faith; there can be no Easter Sunday without Good Friday. In the gospel of John, Jesus tells us: “Unless a grain of wheat falls upon the ground and dies, it remains just a single grain. But if it dies, it will yield a rich harvest.” John Paul Raphael has died, but something has also died in all of us who love him. John Paul Raphael will rest in the ground later today, and our hearts too may be in darkness as we grieve and suffer. John Paul Raphael, we believe, has been raised to new life in Christ. But for us, there can be, with God’s grace, also a tremendous harvest from this pain. If we can trust the Lord with all our hearts and not rely on our understanding of what WE thought would be best (and I promise I am talking to myself here); if we can place our own hopes and dreams into the earth with John Paul and believe with ALL OUR HEARTS that our faithful God is with him and with us, there WILL be an abundant harvest. In God’s time and in his way, but God’s grace will not fail. We have to believe this for John Paul’s life to have purpose. This truth will help and heal us in time, especially as we see new growth or healing in our lives or in our families or in our own hearts where there was none before. This is the legacy I believe John Paul Raphael can offer us all -- that miracles are all around us, all the time. That we can let ourselves be LOVED and rest in that love. And that God will bring something beautiful out of our pain and suffering if we enter into the suffering with Him and trust Him with all our hearts.
Thank you so much for being here with us today. May John Paul Raphael’s life and all our broken hearts be for the glory of God and our salvation. We miss you so much, little one.
