We’ve been squeezing in every last ounce of warm weather and connection time – feeling so grateful for nature and for each family member and the unique role they play. Today we watched family video clips and did another hike. Grateful to be together. Grateful for fall leaves and fresh breezes. Grateful we live in a day where we can work with modern medicine to release Max’s tight contracted skin and allow his arms and neck to regain their full function. Feels like we’re entering another trust fall – but maybe we’re always in a trust fall, just entering into a little portion where it feels like a bigger drop. The last few weeks with Max off of pain meds and with his normal drive has been heaven to us! Falling. Trusting. Waiting with the utmost assurance that God’s hand will again be revealed. Grateful to know He’s on our right hand and our left with His angels round about us to hold Max and all of us up.
We’d like to invite you to join us for a special prayer and fast for Max. He goes in for surgery on Tuesday, then might be in the hospital for 10-21 days.
We are fasting for Max to be protected, for the surgeon to be guided, and for the new grafts to take so Max can enjoy full range of motion throughout his life.
We love you. Thank you so much for your faith and prayers!!!
What a joy to get away for a couple of days with just our family! Highlights were the hike that everyone kept up on:) and the laughing after 12th Night at the Shakespeare Festival. Our family is forever changed by Max’s burns. We are still finding our way to being a family now. Sam & Max don’t fight anymore. Ben is still finding out how to be friends with Max again. Abi is back to loving and pouncing on Max most anytime. Talmage & Eliza just love. Andy & I are learning to be grateful even with the disappointments. My highlight today was a Sunday nap and chance to lay down next to Max and hold his hand and talk about life at 15 and continuing to be courageous.
I choose to believe when I turn and see his skin far from perfect next to a perfect white shirt. I choose to believe when I see the graphs on his arms that were never supposed to be there, but surprised us when his bandages were first removed from the operating room. I choose to believe when I see him light & happy especially when he’s off of any pain meds for the time being & thoroughly himself! Grateful for health, for believing, for remembering…. Grateful for today.
I love Sundays.
A break from the cares of the typical day.
Today Max talked to Mason and I could tell he felt so loved as he reached out to help his little brothers and sisters and just moved quickly around the house to help prepare meals or serve. It was such a joy to be a part of. Even when he snuck away to scare his siblings it felt so good to have him just being his self and they would get scared and then just giggle together. It’s amazing how the love of one person can make such a difference and I’m so grateful for so many that show love to Max especially in the season of stretching for him.
Feels like additional surgery or surgeries will be necessary, but for today we are just grateful to be a family and be learning and growing together and hopefully becoming more of who we really are and doing more of what we came to do. That one thing is enough today:)
In an earlier post, I made the statement: I’m so thankful to a loving Father who honors us by letting us suffer.
A thoughtful reader responded:
“There is no one that could prevent me from trying to rescue my children. NO ONE. I don’t know what this means – I’m so thankful to a loving Father who honors us by letting us suffer. This statement baffles me.”
My response to her was:
“Thank you for your thoughtful question. I hope you know that I, like you, will do anything in my power to prevent my children from suffering. I’ve also learned a great deal from this talk by Kevin J. Worthen:
[To quote C.S. Lewis,] “The problem of reconciling human suffering with the existence of a God who loves, is only insoluble so long as we attach trivial meaning to the word ‘love.” Too often we confuse God’s love with human kindness. We want, in fact, not so much a Father in Heaven as a grandfather in heaven—a senile benevolence who, as they say, ‘liked to see young people enjoying themselves’ and whose plan for the universe was simply that it might be truly said at the end of the day, ‘a good time was had by all.’”
But that is not God’s plan for us. He wants us to become like Him. He wants us to experience the fullness of joy He enjoys—eternal joy, not merely temporary contentedness. And He loves us enough that He will do whatever it takes for us to reach that goal, including allowing us to experience things that are difficult and soul-stretching. And He does it not because He doesn’t love us, but precisely because He does.
But even when we have to learn things from our extremities in order to fulfill God’s plan for us, His love will be there to sustain us… especially when we need His love the most. …So let us not sell God’s love short by confusing it with mere human kindness. His love is much deeper than that. (Kevin J. Worthen, “It Was as If a Blanket of Love Was Flowing Over Me”, May 2, 2013, BYU Women’s Conference)
What are your thoughts?
• Checking in with Max as we approach 90 days from the fire – so much good ahead, loving our boy, grateful for the hope that comes with each new day.
• Remembering that all wounds take time to heal and there’s something magical that happens in the meantime… we are changed. I know I’m being changed to be more peaceful and patient in this process & Max is being changed every day!
• Andy took the kids to see a movie – great diversion & good times together!
• I soaked in the love at www.lds.org wow…. the messages that reached my soul were … growth comes from joyfully living the path of our Father in Heaven….. God is a god of love…. He knows of your successes… each one… even if they seem small to you….
I celebrate the small successes of sleeping precious children, a vibrant marriage, and learning to trust more in God’s plan.
Please pray for Max’s neck to extend and stretch and straighten and his wounds in armpits and neck to close up so that pain is down and he can return to school & more physical therapy.
On the last day of annual convention, we were given the Elevation Award.
Thank you for honoring us.
Painful night with our boy. He’s made so much progress in so many ways. He’s been working his arms so much that some of the skin in his armpits has now reopened. I so wish I could take it all away. So many miracles still.
Miracles of today:
• Remembering that we need not carry our burdens only turn them over to our Savior
• Coaching Max to breathe & turn it over
• The relief that sleep brings!
• Loving friends to comfort & support us Marc & Jenn Garrett & Adheesh & Santoshi & Dallin
• Justin Lee that took Max & our crew to the theater yesterday
• Max’s peace amidst the storm
Thank you for your prayers for his armpits to heal & neck to extend!
Ring them bells Saint Martha for the poor man’s son
Ring them bells so the world will know that God is one
For the shepherd is asleep where the willows weep
And the mountains are filled with little lost sheep
Ring them bells for the blind and the deaf
Ring them bells for all of us who are left
- Bob Dylan
A sister in the ward stopped us after church on Sunday. Her uncle had 3rd degree burns on 50% of his body 40 years ago, and died months after his accident. She wept as she heard Max’s story.
While we were in the hospital, I met a man named Feike Van Dijk who had been burned on his right arm and face. He said that a fire had started in his house. He and his wife tried to put it out, but it quickly grew out of control. They started running through the house to vacate their 5 children. They got 2 out, then he got the baby out with serious burns. By then, the fire department had arrived. The fire was so advanced that house was collapsing. The fire chief wouldn’t let the parents back in the house, so the parents and 3 children stood outside and listened to their 2 young children cough their last breath inside.
I wept openly as I sat with Feike and put myself in the his shoes. Words were meaningless.
Maybe one of the purposes of suffering is to unite us.
If our experience with Max has taught us one thing, it is that we are all one great family.
I’m so thankful to a loving Father who honors us by letting us suffer.
I’m so grateful to a loving Brother who opens doors so that families can be together forever.
Miracles of this week:
• Max made it through his first week of school – part time but full on!
• His range of motion continues to increase. His right arm can get to 160 degrees, which is “full range”!! Three hrs/day is our target for therapy – we’re grateful for great supports (Mindy & Mark).
• Today was Sam’s birthday. Max gave some of his own gifts, and told him how grateful he was for Sam’s help during this time (babysitting during wound care, helping with meals, cleaning, etc.). They have grown so much closer!
• When Max first came home from the hospital, Abi wouldn’t come near him. We would hold her up to him for a hug, and she would push away. Max didn’t seem to mind. He would talk to her, rub her curls, and snuggle with her. Today in church, Abi sat on his lap all through sacrament meeting. Now, when he comes home from school, she runs up to him, shouts, “Macky!” and gives him a big hug. It’s so sweet to see them reconnect!
Thank you for joining us as we continue to pray for his wounds to close, scarring to decrease, and for him to be able to turn his head.