On May 11th we began a journey. We did not sign up for it, and certainly were not excited about it. We were shoved through a door that closed behind us. The only way to go was forward. It is on this journey we have been changed. We have learned lessons and have been impacted forever by our son, Heavy.
The moment we laid eyes and hands on Heavy we knew and accepted in our hearts that he was not made for this world. However, in a way his twisted and broken body was perfect. We had come to realize that Heavy was not created to be only our son. He is surely a precious gift, but one that we are meant to share. He is God’s gift. The catholic monk Thomas Merton said, “A tree glorifies God by being a tree.” We believe that Heavy has and will glorify God by being, well, Heavy.
Perhaps the greatest example if not the greatest miracle in this is that God is a redeemer. What should be nothing but a terrible thing God can claim and make good. We have seen that over and over in the past 5 months
We have also learned that odds don’t always mean a whole lot. We were told Heavy would not likely live more than 3 weeks past May 11. But he was determined to catch a glimpse of this world. His fight and resiliency inspire us.
Throughout our journey we have probably learned the most by watching this through the eyes of Peter and Maria.
Maria is a sweet 2 year old. She has always been excited about her little brother Heavy and talks now about how cute he is. Her face lights up when she talks about holding him and kissing him nicely. She danced her way into the funeral home the other day, so excited to see her brother one more time and give him the picture she made for him.
Peter has been at times frighteningly profound and wise far beyond his 4 years. The depth and innocence of his thoughts have taught us much and served as a humbling reminder of Jesus’ words in Luke 10, “…you have hidden these things from the wise and intelligent, and revealed them to little children. Yes, Father, for this was your gracious will.” Over the past 5 months often it has been Peter that has opened our eyes, lifted our heads, and pulled us into another phase of the journey.
The day we found out we would have another baby we told the kids. Peter said, “It’s going to be a boy, and his name will be Heavy.” We didn’t think much of it at the time, but he had no idea how prophetic that was. Then in May, finding out there were serious abnormalities in our child was a crushing blow. We were devastated. In that moment, Peter taught us to hope as he repeated words back to his parents that have been spoken to him when he feels his world is crashing down. Everything would be fine. Heavy would be ok. One of the most difficult things to watch as a parent was Peter taking his doctor kit, walking over to Chelsea’s belly and saying he was going to fix his brother. There was then a period of time where nearly every day Peter would tell his brother jokes, snuggle Chelsea’s belly to give him hugs and kisses, and tell him goodnight before he could himself fall asleep. He was soaking up every moment he had with his little brother, and he reminded us to do the same.
As we began to talk to the kids more about that Heavy would probably not come home with us, but instead would go straight to be with God Peter would say things like, “its ok, we will get to see him when we die and go to Heaven.” He would wonder whether he and Heavy would go to the same Kindergarten, Heavy’s school would just be in Heaven.
His sense of duty to care for and love his brother is remarkable. On Wednesday morning, we went to the funeral home to place Heavy in his casket and place in there some pictures the kids had made. Each of the kids also brought a band-aid. A tissue sample had been taken from Heavy’s leg and the kids each wanted to give him a band-aid to cover it. We had planned to have the funeral director place the band-aids on Heavy and wrap him in the blanket we had brought. We would then place him in his casket as a family. Peter became angrier than we have ever seen him. We found out the source of his anger was the band-aids. He told us that he wanted to place the band-aids on Heavy’s leg because that is what a big brother should do.
That morning, Peter and I placed a Star Wars Yoda band-aid on Heavy’s leg, with a Strawberry Shortcake band-aid right next to it. We then together wrapped him in his blanket and carried him to Chelsea and Maria so we all could place him in his casket. The love and sense of duty Peter showed to his little brother was moving beyond words.
Later that night He was talking about Heavy and how what we saw today was only his shell. His eyes were wide as he talked about Heavy’s new body in heaven that works and is perfect. Then he paused, and said, “Wait a minute, do you mean that when I get to heaven, I will get a new body too. Just like this one?” Chelsea said, “That’s right.” Then he smiled big and said, “Isn’t Jesus nice?”
It is with those words in our heart that we enter the next chapter of this journey. We are thankful for the time we had with our son, we will love him forever, and we know that God is still good.
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| Our sweet boy before his bath |
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| Our family |
