Since Will’s passing, it seems like we have joined two clubs, neither of which you ever want to be a part of. One is a group of parents who have lost children. I sometimes feel like a magnet to these people. It is the most unwanted type of blessing. It happens like this - I meet someone for the first time - a wonderful, kind, lifetime friend type of person - and I wish I never knew them. The reason we met, our common bond, is that we both lost a child. Never meeting means never loosing. Outside of our loss, we would have no reason to reach out or connect. Maybe we would have met at the playground or through a mutual friend or maybe we never would have met at all. That’s the unwanted part, the thing that draws us together is the one thing we wish never happened. Usually a blessing is something you desire, maybe even pray for, it’s something you want. These new friends are ones I don’t want because of the circumstances around which we met, but they are some of the greatest blessings. It might sounds offensive to say it like that, but if you are one of these parents, I know you understand that it’s not offensive, it’s just true.
My husband and my parents have been the main people I go to. They understand. But these moms I have met who have lost their babies like me, I connect to them differently. They understand too. We both carried our child and felt them kicking - living - inside us. We both loved them unconditionally before even laying our eyes on them. As time goes on, maybe people forget, or even if they don’t forget life starts to get back to normal and no one talks about your baby anymore. Not these moms. They know that no matter how long it’s been I still think about my baby every day because they do too. They know that all I want is to just hold my little boy, I want to play with him and comfort him and watch him grow up because they feel the same way about their child. We share the same fears, anxieties and are stuck in this place of not knowing together. Not knowing what to do with our baby’s clothes and toys and books. Not knowing how to answer their siblings’ questions. Not knowing how to remember them as the days pass and we start to forget - how it felt to hold them and how their eyes looked as they started up at us. Not knowing what to say when our child blurts out to a stranger, “My brother died.” Not knowing if we will ever really feel ourselves again, if the numbness will ever wear off, because after all a piece of us is gone forever. Honestly, it is hard to meet these mothers. It is heartbreaking to hear their stories and watch their tears fall onto empty arms. But I need them. However heard it is it is worth it because I couldn’t do it without them. These are the strongest women, the bravest ones and they show me what it means to live in a world that is not supposed to be.
Then there is the second group that we are suddenly a part of. The group of parents who have a child in the hospital or a child who has been given a diagnosis that is more like a death sentence. These parents, like us, are usually thrown into this club unexpectedly and are dazed when they find themselves facing the possibility of loosing their child. No one expects the diagnosis or the pre-term brith or the near-death experience. These parents come to us because we have been there with two of our children. Let me just say this - please keep coming to us. Before you read about the hard parts of talking with these parents, before you second guess yourself or wonder if you should give my number to your friend whose baby is in the NICU - just believe me when I say please do. We have been through any parents’ worst nightmare and I know that when you are whipped into this situation it is daunting, scary, frustrating and heartbreaking. You cannot walk through it alone and just because it can be hard sometimes doesn’t mean I don’t want to help someone else through it.
What’s hard about it is wondering why God heals some and not others. I always believed and still do believe that God COULD have healed Will, He had the ability to do it anytime. Why He didn’t I will never know or understand. That’s hard for me. I think it always will be hard. Since Will’s passing I have heard story after story, miracle after miracle of God healing babies. I pray and I listen and I offer anything I think might give a moment of comfort or confidence. In no way do I wish these miracles wouldn’t happen, I am desperate for them. I don’t want any parent to lose what I have lost. I don’t want any child to suffer. But I also sometimes wonder why them and not Will? I’m sure some people would say the same about Caroline. Why did God heal Caroline and He didn’t heal my little girl? I don’t know. Maybe there is some theological explanation that someone a lot smarter than me could explain. But I simply don’t understand why some babies are healed and some are not. I don’t think I’ll ever know why I had one who was saved and one who was not. Maybe I don’t need to know, but I still wonder.
If you are a parent who fits into one of these groups, I just want to say that we need each other. Don’t feel embarrassed or hesitant or reluctant to reach out. If you have lost a child, I would love to meet you. If you have a child in the ICU or a child who has receive a diagnosis from a doctor who says they will not live or a child who is in an unknown medical situation, I understand. Everyone likes to say, “I understand how you feel,” but really only people who have been through it can tell you that they truly understand and I understand in a way that I wish I didn’t. I wish I could have lived my entire life with a naive misunderstanding. I wish I could say that I have never set foot in a Pediatric ICU and I don’t know the feeling of uncertainty as I watch my child continue to live when I am being told he will die any day. I wish I didn’t know the pain of holding my baby as he took his last breath or the agony of planning his future at a funeral home instead of planning his first birthday party. Will will always be a part of me and I will never stop missing him, never stop wanting him back. I know that his life brought joy and glorified God and I am determined that through his death there will be joy and God will be glorified. The joy is brought through new friendships, through helping others and through sharing his story. Without seeing the joy, without giving thanks for Will and looking for ways to help others I would slip into a miserable and sad existence. I am miserable and sad sometimes, but a life marked by ingratitude and bitterness is not what I want - it’s not what I want for my children, my family or myself. Paul writes that we should rejoice with those who rejoice and mourn with those who mourn (Romans 12:15). Seems simple, so I’m not going to overcomplicate it, I’m just going to do that. If I meet someone with a miracle child, like Caroline, someone with a baby who has survived the NICU or the grave diagnosis or recovered when everyone said they wouldn’t, I will rejoice with you. Not begrudgingly, but I promise to whole-heartedly rejoice because God has chosen to shown Himself through your child, a miracle. If you have a child in the hospital, a sick child or if you have lost a child, I will mourn with you. I will be sad with you, I will cry with you and pray for you and with you. Regardless of how I know you or how we met, God calls us into community and anyone in these two “clubs” is a part of mine. God promises to turn sorrow into joy, I'm going to claim that, joy will come out of this loss.
In John 16, Jesus is talking to his disciples about how they will grieve when He dies on the cross, how they will mourn when many are rejoicing (FYI - a lot of people didn't like Jesus). Jesus uses the example of a woman giving birth, her pain turns into joy as she goes through labor and then welcomes her child into the world. He tells the disciples that when he dies, it will be their time of grief, but then He gives them hope. Jesus promises that they will see Him again, He will conquer death and that sorrow will turn into great rejoicing. My joy may not be complete until I see Jesus in heaven, but I am claiming this same promise - my sorrow will turn into joy because He promises it will.
Our mission is to glorify God by supporting children undergoing life-saving heart treatment and creating a caring community for their families in honor of our son, Will.
My name is Courtney Hughes and I am Will's mommy. I am happy that you are here to read Will's story and make a difference with us!