It is with a broken heart I share with you that Landon has passed away. After 7.5 years of fight, Landon’s final days led to his passing, at 9:53 pm on Thursday, April 22nd.
Landon’s life has been full of ups and downs. We’ve battled together through illness, seizures, hospital stays. He and I have fought hard, side by side, through so many things. My commitment to him was always to fight for him with all that I have, as long as that was what was right. Over the last few weeks it has become increasingly clear that his fight was fading, and the hardest, but most loving thing I’ve been called to do as his mother was to be willing to stop my fight too.
I had the most unfortunate of burdens of knowing what this looks like. I watched Nolan go through a similar pattern nearly four years ago. While that burden is unbearable, and this circumstance unimaginable, it allowed me to be honest with myself as soon as I saw the same signs in Landon.
After some particularly stressful moments in the last couple of weeks, I’ve had very transparent conversations with Landon’s palliative care Doctor and case manager. I knew he was getting weaker, I understood what that meant, I sought their support giving him the best, most loving care we could give. When we talked Tuesday to say he was rapidly declining again, and it was time to just comfort, they immediately worked to readmit to hospice, provide comfort measures, and ensure we were supported and surrounded by a loving team that already knew him well. I had the blessing of spending most of his final hours side by side, holding him, talking to him, and admiring those long eye lashes and sweet cheeks I know so well.
By Tuesday night, my parents were in town to help, Justin was aware and working on a plan to get home days sooner than planned, and family members were aware of the seriousness of the situation. At this time I felt fairly sure, but Landon has fought hard so many times that it still wasn’t clear if we were dealing with days or weeks.
Wednesday morning I awoke to a white world. Thick, wet, completely out of place snow had blanketed my view. It was as if God said – just for today, I’ll hide the blooms, I’ll hide the green, we’ll forget about spring, and instead welcome a blanket. I pulled grief up over my shoulders like a blanket that day as well, welcoming its weight, its cover. Grateful that the outside world looked as out of place and wrong but beautiful as the inside felt. I hid the brave, the optimistic, forgot about the fight, and instead welcomed grief. Landon was declining further.
It was now certainly not if, but when, so Justin worked hard again to scoot his flight even earlier, and thanks to a supportive management team, now had a flight home in style arriving right in town no later than 8:00 pm Thursday. His parents were on their way as well, with a similar arrival time. Their vehicles pulled in the driveway minutes apart, and ahead of schedule, giving everyone a chance to see and say goodbye to Landon and to support one another. Similar to Nolan, it was as if Landon heard “everyone is here, we’re ready when you are”.
Everything was as peaceful as one could have hoped. Losing a child is unimaginable. Losing two will certainly prove to be as impossibly hard as it sounds. But both times, I’ve been able to provide a loving, comforting, calm environment. One with love, prayer, music, stories, family, and hugs. Both times those on their way arrived just in time. Both times, the boys final breaths were in my arms. My biggest comfort today is knowing that this time, instead of death splitting them up, it brought them back together.
We love you all and God chose just the right Mom and Dad for these precious boys. Only heaven will reveal the lives that were impacted…I know my ladies group have always loved, cherished and prayed for all of you. He is in the arms of Jesus hearing well done….and we are thankful for having the joy of knowing him.
We love you and admire you so much. You have been an example to all of in strength and faith.ππ»πππ»β€οΈππ»
Iβm so sorry for your loss. Iβm praying for you and your family.π’π
I’m so sorry to hear this, my thoughts and prayers are with you and your family,.. your family is amazing,strong,loving, faithful,caring,,,, thank you for sharing you boys life with us,,, love and hugs
I am so very sorry to hear this news. It has bee a long road the two of you have traveled and you have been such an angel through it all! My prayers go out to you and your family!ππ
Oh my heart is shattered for you all!!! I had the honor and privilege of meeting the boys when they were in my daughters care at the Y. I have followed their story since then. Those two little angels were certainly blessed with the most compassionate and loving family. I hope and pray that in the days ahead you will feel the strength and comfort that we are all praying for. They made so much of an impact on more people in their short time here on earth than most of us do in a long lifetime.
Please know that I will keep you all in my prayers!! πππ’
I can see two little boys running through fields picking flowers and laughing as they go. My prayers are with you all. I know the pain you feel is unimaginable, but your faith and love have been an inspiration to many. God Bless!
Our prayers and thoughts are with you and your family. You have been such a great inspiration to so manyβyou will never know the great impact you have had on lives. May God bless your family!!
The sadness in this world at Landon’s passing is covered by the joy in heaven as he was greeted by Nolan. May God’s love and peace surround you all.
What an incredibly brave journeyβ€οΈ
Oh my, Iβm so sorry for your loss of your sweet little boy again, and so relieved for Landon and Nolan to be together again. Running and laughing and waiting patiently for the rest of you to join. Your journeys have been hard but oh so special. Oh such a blessing. And oh so used by God to touch oh so many lives. It truly is about eternal things. You are an amazing family and you Melody, are an amazing person to be so gracious and trust God in all things. Randy and Iβll be holding you all up in prayer as you continue to walk your journey out. So, be weak when you can and know that there are many who are holding you up to the Father who loves you, especially in your weakness.
Love, Christie & Randy Butcher
Your faith and your words are so inspirational to all of us and remind us of how fragile this life is. They are now both together again sitting on God’s lap and looking down on your family to let you know it is ok and they are good! My prayers will be for continued comfort!
Thank you for taking us along on this journey with your precious boys. Sending love to each one of you β€οΈ
It will be a tough, long, lonely, empty feeling, and sad adjustment. Though I know you have the strength of family, friends, and most importantly your Faith in GOD to get you through. Landon is now with Nolan in Heaven having a great time in pure form bodies and waiting for the day you all will join them to tread the Streets of Gold forever. Love You and Prayers for this time of sadness and transition.
This was the first time I’ve heard your story thanks to a post full of love for your family from Embrace Life Emma – Life with Lissencephaly – Smooth Brain. Praying for your family’s grief and rejoicing for Nolan’s and Landon’s perfect healing – until you all meet again.
You are everything you could have been. My heart is full of empathy and pride for you. Words are empty but know we love you.
You will never know the full meaning of the “Why’s” and “How come’s” until we get to heaven’s gate. The sadness of Landon’s passing is difficult for us to imagine, yet knowing he, along with Noland, are in heaven now, reunited again, laughing, hugging and smiling down on all of you brings a sense of warmth. These two beautiful souls brought so many people together across the miles. Their journey became personal because you chose to share it with us. May God bring you comfort during this time of mourning, and may you all know just how blessed you are to be their mom, dad, brother, sister, grandma, grandpa, etc… Sending hugs and prayers to you all.
Please accept our condolences on the loss of your son… I know this is heartbreaking for you, you gave him the best life possible. I am sorry to hear of your loss…
I am so sorry for your loss. You and your family are in our thoughts. Wishing you peace in this difficult time.
Two beautiful souls have been loved and brought so much love. My you and your family find peace in knowing they are together forever. My heart aches fo youππ
Oh friend – I love how you accepted the blanket of grief in nature and life. (It sure beats denying it) What deep pain for all who knew and loved Landon. I’ll always remember those beautiful lashes and cheeks also.
I’m glad you were all together and that your boys have been reunited.
Thank you for always sharing honestly – it is powerful
So sorry for your loss. we will continue to keep you in our prayers and in the prayer groups we share.
My thoughts are with you and your family. Your love and devotion to Landon and Nolan is beautiful. Thank you for sharing them with us through your posts.
My heart breaks for you. I have followed your blogs and their lives and prayed for you and the boys over these years. I am so happy you were blessed with Nolan and Landon. My prayers continue.