Ike

Be Kind – Be Gentle

Come to me, all you who labour and are overburdened, and I will give you rest. Shoulder my yoke and learn from me, for I am gentle and humble in heart and you will find rest for your souls. Matthew 11:28-29

The gentle and kind heart Jesus models for us in Matthew’s gospel calls to me today, Monday, January 24, a.k.a. the first-ever Moebius Syndrome Awareness Day. As I read the stories of the children and adults whose lives have been affected by this syndrome, my heart aches with compassion for the pain and struggle they have borne. I am filled with gratitude for their vulnerability and willingness to share their stories.

Today our little Ike remains in the pediatric ICU at the DuPont Hospital for Children in Wilmington, Delaware, and it looks like he might beat the 6-8 weeks discharge rate of tracheostomy patients. Leigh and Jason are being trained to care for him, and although they will not know for some time how ventilator dependent he will be, they are hopeful.

Most of you are aware that shortly after little Ike Thomas Parmer was born last September 11, he was diagnosed with both Moebius Syndrome and Poland Syndrome. On December 21, he was again admitted to the hospital where he was shortly diagnosed with “chronic respiratory dysfunction.” After undergoing a tracheostomy on New Year’s Eve, Ike remained in fairly critical condition with numerous non-breathing episodes. Finally, on January 6, a bronchoscopy revealed severe tracheomalacia and bronchomalacia, especially on the left side. Ike’s airways would collapse like a wet noodle when the ventilator pressure was turned down. Now that they have figured out the correct vent settings, he is doing well.

Pondering the stories of the lives affected by Moebius Syndrome and how much we, little Ike’s family, have been encouraged by them, I recall some words on adversity I heard years ago. I was heading to Mississippi State for a college sorority reunion when my Aunt Reba, aware of the mess my life was in at the time, insisted that I listen to eight sermons on “adversity” by her favorite preacher Charles Stanley. Eight!! Yikes!!! I resisted…she insisted…and about halfway to Starkville I pulled off the highway to write down this quote, “Someone who is going through adversity is going to look for and want to talk to someone else who’s been through that same valley and come out on the other side triumphant in the name of God!” The courageous and inspiring stories of the people affected with this syndrome encourage those of us who have loved ones walking through the same difficult valley.

As I watched “The King’s Speech” with Colin Firth playing the part of King George VI this past weekend, I was reminded how cruel people can be when they encounter others who look or speak differently, and I recall the saying traditionally attributed to Plato, “Be kind, for everyone is fighting a great battle.” Tears flow down my cheeks as I watch the king struggle with his speech impediment, and I am all too aware that the tears come from the deep ache in my heart as I ponder the tough road little Ike will encounter as he grows older.

Be kind. Be gentle. Be grateful. Be hopeful. We are grateful for little Ike’s early diagnosis and the incredible medical care he has received, and although he is not out of the woods yet, we remain hopeful. We are grateful for those who have gone before us, walking this valley of adversity and difficulty. And we are most grateful for you, our friends and family, who have lifted little Ike and our family up in your daily prayers.

We are grateful for the gentle and kind words you continue to send to us or post on our Facebook page, and I conclude with this hopeful message from my friend Jimmy Bartz out in California.

Just a note to say I have just finished praying for Ike, for his parents, his sister, and for you. While I have no idea how the narrative plays out as the days and weeks move forward, I am convinced that Ike and your entire family sit in the hand of an unfailingly competent, wholly devoted God. I wish things were different and more clear, but I have hope.

Love,
Mary

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