I will be grieving pretty openly the next few days. If you need to keep scrolling that’s ok, I’m not offended. But a lot of the followers are here because they or someone they love care for a medically fragile kid like Nolan. Many of you care for a kid with Lissencephaly. So I want to be transparent and honest. I want you to know how hard this is. But I want you to see that despite how hard this is, I am ok. And when the time comes you can be ok too.
Reflecting on yesterday, these are some of the defining moments outside of Nolan’s passing.When we had to call it in, we were able to get a familiar face and friend in our old home health nurse. Rather than a stranger, we had a friend, a former caretaker, and she prayed and grieved with us.
There will be lots of hard moments, but carrying Nolan out of his room to the gurney was one of the hardest moments I’ll ever have in my life. But I wanted to carry him myself, and I did. I can do hard things.
As the hearse was ready to pull away the school bus pulled up to get the boys for preschool. Rather than making me sad, this reminded me that the world is still turning, and when we are ready to be normal again, our world can start turning again too. I told the bus driver of Nolan’s passing, and we made plans to get Landon back on track Monday. We can do hard things.
I was so dreading telling Karson. Dad picked him up from school a little early and Justin and I told him in the twins’ room. He was so big. He cried hard, and said this was the worst day of his life. I agreed it was the worst day of mine too. We cried together. We said it’s ok to cry whenever you feel like it. But it’s ok to laugh and play whenever you feel like it too. He wanted some quiet time with us, then he and I snuggled some more. He asked a lot of good questions. A few tears and questions have followed, but he has played hard in between. Marshall did his job, and proved his purpose as Karson’s first giggle was the result of sloppy puppy kisses. There have been many more giggles since. Karson is glad “so many people care”, and has repeated that to us multiple times. He is 6, and he can do hard things.
After making arrangements, Justin and I came home to a porch glowing with candles. This is not a tradition I had heard of, and its sweetness brought me to me my knees. I was on the porch looking at cards as another family pulled up. They continued all night. Some of the gestures are from women who have lost loved ones. One who lost a husband years ago. One who lost a sweet little boy. Even our nurse, whose love for Nolan equals mine lost a daughter years ago. So being kind to us undoubtedly brings back hard memories, but here they are. They can do hard things.
It’s been 24 hours now. One day is behind us. Soon it will be 24 more. I can do hard things.
Mama Laughs 
Prayers for peace and comfort. Prayers for you to know it’s ok to take care of yourself when you feel the need. And prayers to give you strength when you think you have none left. God’s mercy and love.
So sorry for your loss. Praying for your family!
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I pray you never ffeel the need to apologize for grieving. I’ve followed your journey with the boys for several years and am thankful for you honesty and transparency. Sending up extra prayers for you and your family in the coming days, weeks, months.
Your faith and strength are inspiring! Prayers for you all!
I am Jodi Draper’s mom. I have kept up with your life because of her and her family. Jodi text me right away and I went to your blog and read it. I too lost a son and my husband as I am sure Jodi may have told you. I have never been as touched by anything as I was after I read the things you have posted about your twins. I have cried for you, prayed for you but I don’t think I will ever be the same after I read your blog. It is evident where your strength comes from. You have said good bye for now but your son is in the arms of Jesus smiling no pain and he is waiting for when he will see you all AGAIN.
Bless your heart sweet Melody. You are one brave woman and although I do not know you personally, I love you. May God Bless you and your family during this very difficult time in your lives. God Speed.
I so admire your strength, your beliefs and your passion. Through this blog we feel and share both your grief and your hope. It truly is inspiring. Sorry for your loss. Thoughts and prayers to you and your family in this time of sadness and may brighter days lie ahead.
This breaks my heart and takes my breath all at once. Praying for your strenath through these hard things ♡
Melody, You are the strongest person I have ever known. God Bless you and your dear family!
I am so sorry for your loss! I can’t begin to imagine your pain. My prayers are with you and your family, today, tomorrow and aways!
I feel like I know your family well even though I am a stranger. I can’t imagine how brokenhearted you all are! I’ve never seen so much love and those boys will always know that they were and are loved so profoundly. There’s nothing more important in life than living a life full of love ❤️
I cried when we put a candle on the porch – I had never done the candle before. I cried each time I read your entries. I cried when I first heard of his passing. Such a beautiful little boy. Thank you for your openness and honesty. It will help many in the future. I have friends who have lost children. Older ones than Nolan. They never get over it, but they survive and help others as they go through it. Thank you God , that we have you to lean on, that your promises are true. Continuing to pray for all of you.
I remember doing ‘hard things’ I pray God’s blessings will continue to lift you…
A wise friend once told me “one day it won’t hurt as bad as it does right now. ”
He was right. His words have given me hope in the darkest hours of my life, I pray that they give you some comfort too.
This is so beautifully written. I’m mom to a CDKL5 baby. Every week I read of another kiddo passing from complications, and I know my Andrew isn’t as severely effected as others, but it’s scary, and hard. I just got his diagnosis and am still wrapping my head around it, learning, and grieving kids I’ve never met because we all share in the same battle. I have a chest cold and am terrified he will catch it and a “complication” will arise. I know that, in all reality, I will probably outlive my own son. I watched my parents outlive a daughter and how horribly it effected them and me, my second sister wasn’t born yet, but my mom never recovered, really. I hope I am as strong as you when my time comes and I have to “do hard things”. Thank you for sharing such a vulnerable time, and doing so with such raw emotion, beauty, strength, and mostly grace.
I came across your post by accident, but not by accident. It was one of those coincidences that happen where you know we are not alone and that the angels are by your side. You see, this is the 5th anniversary of the passing of a very special boy named Jack. His diagnosis was similar to your Nolan, and I was his home health care nurse. He was almost 4 years old. I too was called by the family to share their grief, because I too had loved him like my own.
You can already see the how your story would touch my heart. Jack was sweet and joyful, and very loving and lovable. These beautiful souls, like Jack and Nolan, come to earth to teach us about self-acceptance and joy, and that we are good enough just the way we are. They show us how love needs no words. This is what Jack taught me.
I thank you so much for having the courage to share your story. Five years later, the love is still alive in my heart, and your post allowed me to truly experience all of my emotions. Remembering our boys and holding their love in our hearts will always keep them close.
God bless you, your family, and everyone who shared their hearts with your precious boy.
As a Liss mom I thank you for sharing this part of the journey. I shared yesterday’s post on my FB page so more people can understand how hard and beautiful this life is, and to widen the circle of love for your family… xoxoxoxoxo
Hi Melody! I just said a prayer for you and your family to have strength to be able to do “hard things.” Love you all!