We said goodbye to Gwendolyn Strong last weekend. She was an inspiring girl with heroic parents, Bill and Victoria. On our journey with a medically fragile child, we haven’t really found that “support groups” work. Life with a family member in need of round-the-clock care is uniquely demanding such that carving out time for structured activity and another meeting is very difficult. But we have come across people who serve as valuable examples and encourage us in our own journey by the way they navigate theirs. While life doesn’t allow for extended and regular contact, when they live in your town you can run into each other occasionally, you can touch base with a question about a doctor or local resource, and— perhaps more than anything—you can get a knowing nod, smile or sigh as you keep battling on.
Gwendolyn was an amazing child who lived an amazing life and, while it’s hard to look past how much a terrible illness robbed her of, it was a life so abundantly rich in love from friends, family, our community and the world beyond. But no one’s love was more evident than that of her parents—and I’m so glad Gwendolyn experienced that. Bill and Victoria were knowledgeable advocates who fought hard alongside their daughter. They never lost sight of the severity of her condition and the likely outcomes, but also constantly kept the fact that she was a little girl filled with wonder and personality in view. They nurtured, celebrated, trusted, challenged, inspired and pressed on. While their child’s condition would have justified narrowing their focus and attention only to their own family’s concerns, they looked broadly beyond themselves to other families facing similar struggles and poured energy into a foundation so that future suffering might be spared.
THE PART WHERE I (ROLF) MAKE THIS ABOUT ME: I’ve got no real eloquent way of wrapping this up and I’m very hesitant to go on as any grief I might be feeling is nothing compared to the Strongs’ heartbreak, but I guess since this is my blog about me I can do that here.
I was in a bad mood in the evening after the memorial service. At first I thought it was just frustration over a few things breaking around the house, but it became clear at 2am that things were running deeper. A few years ago, I remember coping with Nina’s memorial by going numb. Not sure I’m doing that now, but the thoughts that fly through your head at that hour can be torture:
Rudy is an outlier—like Gwendolyn—having lived significantly beyond what several doctors might have thought. that’s cause for celebration…but also makes you wonder how long such a run can last. you can be the best special needs parent in the world and that won’t save your child. with life dominated now by care needs, how could we ever adjust to life without them? not sure if I can list all the kids in our circle who’ve died. i can only think of three HLHS kids Rudy’s age we’ve been following since birth who are still alive. when did their parents know it was the end? what kind of warning will we have? we know of two kids who died on the transplant table last month. i hate that I go to kids’ memorial services and actually entertain what things I might include at my son’s.
Once the musings start, it’s kind of hard to stop the avalanche. Scary to stop all the activity of life to verbalize the raw questions we wrestle with and the feelings that accompany them. I’m grateful to have fulfilling and meaningful work as well as commitments and hobbies that demand a healthy degree of focus and energy, but events like this can trigger a temptation to dive into them to the point where they become a distraction. Don’t freak out–we’re OK. This is our reality. We laugh a a lot and embrace all the moments of beauty we capture on this blog. Perhaps the fact that they take place amidst the undercurrent we don’t often talk about is what makes them all the more precious.
Still no eloquent way to wrap this up. Time to hug my family and gaze in wonder at the little half-heart warrior.
Rudy's Beat 
Thank you for your blog, your honesty helps us all (me) evaluate our own challenges and losses. You are my inspiration. Lots of love!
Rolf, thank you for sharing this journey…you are an amazing writer. You brought tears and also made me appreciate what I have. I work hard every day for children like Rudy…so there can be hope that he will survive and thrive one day. Sending love and strength to you and your family. – Lisa
Lots of love and special hugs to you ALL!!!
Even though I’ve never had a special needs child, Rolf, I get this. I cannot imagine carrying around both realities every minute of every day. The Reality of your joy in his survival, and the paired reality of your grief and fear for the future. I follow another mom of a special-needs girl, I believe she had the same disorder that Gwendolyn had, named Michaela Evannow. She lives in Canada, and she’s writing her grief out as her beloved Florence died in February at age three. Writing it out is something I highly recommend. Thank you for sharing your notes and your heart. This is tough stuff, no two ways about it.
Thanks for sharing your heart with us… what a burden each day, combined with and highlighted by the great joy. Love you much!
Nothing to say except know you are all surrounded with love and prayers.
You all have been blessed with angels. God has chosen you all because of who He made you to be. You all are the bread of life. You have been blessed and are sharing this bread of life though your experiences in life that God gave especially to you. What joy you have experienced that others have no clue. Only you, the special chosen few, can carry on and spread the breaking of your own, mind, body and soul through the bread, and carry to others all we were created to be. Your words are heartfelt. I wish the whole world could humble themselves for even a moment to be touched by the power of your experiences. Please know God is shining though you. May the light you give shower you with the brightness of God’s love.
((((Hug)))). Love you, Big Guy!
Couldn’t have said it better. Prayers to Gwendolyn ‘s family.
Angels don’t die. They get called back when they’ve accomplished what God sent them to do. We don’t like it. It hurts…. it stinks…. it makes loved ones left behind a little crazy for a while. But then, in the blink of an eye, we’re with them again; forever! What a glorious time that will be.
Hugs to you all, and prayers for peace. Love you guys.
Can’t sleep and just read this. Bawling like a baby. What can I possibly say, except I love you guys and my prayers are with you.
dear Rolf- thank you bro for sharing your deepest thoughts and all the while so eloquent… may the writing bring you some relief and know that our thoughts are always with you in your daily journey of joys and heaviness… xox
Thank you for being so transparent. My heart and prayers go out to you and Trish.
We hardly ever remember this… but none of us are promised tomorrow. How long do each of us have? What will we do with whatever time we have? The Geyling crew including your heart warrior have touched so many and done VERY WELL with what you have. Your community is inspired and I think God is proud of your part in the valuable sacred life!
Thank you, Rolf, for your vulnerability and for sharing your experiences and reality. Your sharing, so very eloquently I may add, is a source of strength to some, inspiration to many, and comfort to still others. You and your family are a blessing to me. Love you all, Lori
Thank you for sharing. Prayers for all of you!!
Rolf: Even when times seem dark–we do not walk alone and we trust that Jesus is understanding our fears, pain and uncertainty. When I look at your family–I see a family filled with joy and laughter with Rudy the most joyful of all. He is a child of joy and however long he is on this earth–he gives joy and receives joy from his family and many friends. He is a blessing and is blessed. Your family is the city on the hill–the light that isn’t hid under the bushel–you encourage and light the way for the rest of us.