Little Nina was laid to rest today; a very emotional day, but one of those horrid events that we couldn’t stay away from. We don’t know Todd and Rosy well—we might have lived a couple miles away for a lifetime and never met, save for the common struggle of having critically ill children. Despite very little history, the shared battle makes for a unique bond.
This a club of unwilling members and no two struggles are alike, but there is comfort and perspective that we draw from someone else’s struggle—sometimes its just the look of unspoken understanding a guy like Todd could give me over a cup of coffee, other times it’s a specific insight from someone like Rosy processing her struggle. A couple of weeks ago, Rosy spoke of a feeling of numbness that had come over her in the midst of the intensity. That gave words to a lot of what’s set in over the last two years—there are moments of emotion like we never imagined—but also stretches where so much is going on that I find myself shutting down and going numb. Because there are things I don’t want to think about.
I go numb when I find myself at a funeral wondering if that will be us someday.
I go numb when I realize that I can’t readily recall the names of all the kids we’ve known of that have died in the last two years.
I go numb when I find myself wondering about whether my son will survive instead of whether he’ll like soccer more than basketball.
I go numb when I’m holding a ruler—because it might lead to me thinking too much about how a tiny 2.6mm shunt is all that’s providing oxygenated blood to his body.
I go numb because I don’t know whether to be immensely proud or terrified when a doctor tells me that the course of treatment is unclear because most kids with Rudy’s condition and his complications don’t survive anywhere near this long.
I go numb when I’m at UCLA and overhear a stoic bald eleven-year-old telling of the double-bind he’s in: “I can’t stand the taste of the chemo, but I also can’t stand to see my Mommy cry if I don’t take it.”
I go numb when the cashier at Rite-Aid asks if I’m OK because my joy over finding a great bulk deal on children’s aspirin has quickly given way to tears because I’m actually wondering if he’ll live long enough to take all of it.
I go numb when I think of how painful it would be for my kids to have to go through what Teddy’s had to experience in losing his sister.
I go numb when I realize that doing everything “right” gives no assurance of any desired outcome.
As one not given to routines, in maintaining the daily schedule of 11 medications, feeds, care and treatments, I start to picture how great it would be to be free of all this…and then go numb when I realize the heartbreak that would entail.
I go numb when I start to wonder about what the end will look like…will we know far ahead of time or will it come out of nowhere?
Sometimes it’s just too much for the brain and heart to process, so perhaps going numb is a defense mechanism that spares us some agony. But I’m also glad that Rosy also shared her friend’s challenge of: “Don’t go numb; just love.” Because that’s something we can do. It’s something we have been trying to do and will continue. It echoes Dr. Rick’s words on the patio outside the hospital last fall as we grappled with the news that no further medical interventions were possible: “Go home and love ALL your kids.”
There’s so much of this we can’t figure out (and never will). Looking at it too long brings no clarion insight and probably just increases the uncertainty and terror. But we can figure out the love part. So that’s what we aim to do for Wilson, Max, Olivia, Rudy and those we encounter around us. If I think about the other families, like Todd and Rosy, that I’ve drawn inspiration from, it’s the courageous act of loving in the face of the heartache that seems to help them survive.
We were struck by the prayer during today’s service that joy would be restored to the Fredeen family—simply because the tragedy seems so overwhelming. But presuming that God’s grace is even more abundant than this, it must be possible. And I suspect the resolve to love and not go numb in all of these circumstances is what helps one limp through with some semblance of sanity and ultimately, joy.
Rudy's Beat 
Such a brave and honest post, dear Rolf. Thank you. I can only imagine a tiny part of what your roller coaster ride must be like – never been there with a child of mine, but with a child-in-law, which was as close as I ever want to be. And he was full-grown. Oh my, this is just the hardest, isn’t it? No easy answers – and not too many hard ones, either, are there? But the one you’ve come back to is the one that brings life and hope and possibility. LOVE your kids, LOVE your wife, LOVE yourself, LOVE the Lord. By grace, that will see you through whatever comes. I am grateful for you.
An amazing post, sharing the raw fear and clouded future you are forced to live with every moment of every day. I lift your whole family up constantly for peace, grace, courage and trust as you all continue on this unwanted path. Your strength to put these emotions into words is indeed a gift and I thank you for letting us be a part of this journey.
so beautifully written, and so on-point for what we feel as parents who have medically fragile children. i found myself nodding in agreement through this whole post.
we take comfort in knowing that we are traveling this journey with you, dear friends…
much love,
victoria
I found myself nodding, sighing, and wishing I couldn’t relate. This is a poignant post — thank you for your honesty!
Dang it I just put on my mascara for work and then read this. We live this every day too these days waiting for a new heart for Garrett. I just don’t have the courage to verbalize it let alone write it down. You did a service for me today to know someone else has these thoughts too almost to the letter I feel so horrible for even contemplating Garrett being gone. I am now sure I am not crazy or alone in it and that helps a lot. Now I must go fix my face….:)
My heart aches with your family’s & Todd/Rosy & the countless others enduring such pain. I appreciate reading a bit about your experiences, and I’m moved to be more grounded and present, to ask God’s blessing and favor on your family, and to love those around me completely. May we all choose love and embrace over numbness and exclusion. Peace be yours.
I feel anything but numb after reading that…..that was so beautiful, heartbreaking and honest. Thank you for sharing such intimate and honest thoughts and feelings with all of us. Love you all, Kelly
Thank you, Rolf, for saying all of that. I am feeling a bit numb myself just now as my sister-in-law died suddenly last week of complications from a kidney transplant. She has been at death’s door so many times over the past six years that we thought she would beat the odds yet again this time. As one of my son’s put it, “Aunt Jacki had already used up 15 of her 9 lives and this time was just her time.” I think we were more saddened by the suddenness of this passing than surprised that she died. My brother seems both devastated and also relieved that she suffers no more and he probably is feeling a relief at not having to be the intense care giver that he has valiantly been over the past 8 years or so.
You certainly expressed your situation well and your descriptions help me better understand my brother and his way of coping with his situation–both now and in the past. Thanks so much!!
Thankyou for sharing your heart! We can relate to almost every thing you wrote and just want to say, We’re SORRY that this is something you have to face. It’s hard! No other way to put it. But you will never have to walk alone. Not now..not in the future, whatever the future may bring. Live in today and I totaly agree with what the Dr told you. Enjoy ALL your children today!
Having just lost our sweet HLHS son 2 month ago I can say that nothing prepares you for the time you actualy need to let go. Yes, he was very sick anc lived with a chronic condition. He took lots of care… lots of meds. In the back of your mind you know it “could happen”, yet you dont allow yourself to dwell on the “what ifs” they dont make it. God so gently gives us the unconditional love we need ot care for our dear child right now. TODAY. And He holds the tomorrows of our dear children in His hand. All we can do is REST and know He will hold us no matter what!
We love Rudy! He is such a brave warrior! And so are his mommy & daddy!!! It takes STRONG parents to care 24/7 for your broken lamb. SOmetimes you get exhausted. Yet you can never stop.
I honor you both today for your comittment of love to Rudy . It is a blessing to all who witness it!
Al my love and heart hugs, Esther ( mommy to angel Jadrian )
This was so beautifully written–although I’m very sorry that there was need to write this. You guys are continually in my thoughts and prayers.
This promise from God literally fell out of my Bible and I picked it up today before reading your post.
“I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them.” – Isaiah 42:16
You all are my heroes as you bravely, faithfully and lovingly walk down the unfamiliar path. Thank you for sharing your journey with us! BIG HUG!!!!
Dear Rolf,
I have read your blog for a while now, posting sometimes, but knowing you don’t know me so it may not mean as much, but I just want to tell you that
you are very inspiring.
Your sense of humor is delightful, your kindness is amazing. You and your wife are very beautiful people and I cannot imagine how Rudy’s life would be without you. God chose you for many reasons that are obvious. Only the best for Rudyboy.
When you feel the numbness, pinch yourself and remember you are the best Dad anyone could ever ask for. Rudy is one lucky boy 🙂
Several times each day I pray that God will help Rudy to continue to develop enough to have another surgery and a chance to continue to bring joy to all of us. Even so, I remind myself that God’s will may be different than mine. I won’t stop pleading for Rudy to live and grow and continue his beautiful smile and contented demeanor. One day at a time……….
We have to trust in God!! He ALWAYS provides !! Love you, Jane and Joe xoxo
This is so inspiring, I’m so glad that I am so blessed to have a wonderful family like you guys to call my Aunt, Uncle, and Cousins. I don’t know what to write. I’m so speechless at the enormity of God’s love, and your love. Speechless at how you took hardships and numbness, and turned it into love and strength to go through it all. I wish I could be a person like that.
Kaitlin
Dearest friends,
My heart hurt so much when I read this post. I have no words for you except to say that you are in my heart and in my prayers.
Love,
Tammy
Thank you Rolf for sharing your heart. I haven’t even a clue as to all the difficulties and challenges you all face on a daily basis. You leave me laughing so much of the time when I read your post I forget the seriousness of Rudy’s health. I am encouraged though to keep my eyes on my Savior knowing that as life happens to me and those I love He will give me enough grace at the time I need it and in just the right dose to see me, all of us, through. Grace and Peace to all. Much love, Jo Saraceno
Powerful post Rolfie. The life lessons it takes to write feelings like this is beyond what most of us will ever experience. I appreciate you sharing a glimpse of what you live with everyday. My heart breaks for you guys and is encouraged by your honesty with every post.
I’m still wearing my Rudy bracelet!
My dear Rolf (and Trish)… I can’t pretend to know what you’ve been going through these past 2 1/2 years, but even so you’ve expressed so well what I have imagined you must be feeling… having laid to rest my own two very sick angels after only a day holding them each in my arms. I continue to pray for the physical and emotional strength you need day to day in this journey however long and wherever it may lead you. Thank you for the gift of your humor, wisdom, and deep love, not only in this blog, but in how you live your lives for and with all your wonderful children. Wishing we didn’t live a continent apart, dear brother…. love and peace, Andrea
Thank you so much for sharing with us so honestly. I’m weeping and praying.
Wow that was really good! If I can say it was really good.?. Doesn’t sound right to say that. Gods Love!
Gosh, I love you, love your kids, appreciate your journey as far as it is possible for me and praise God for the heart and soul that you share with us. It dives deep into my heart and helps me to see who and where I am. Thank you for allowing us to share a small part of this journey with you.
Nina’s story touched my heart and I am praying for her family and friends. Always praying for your sweet Rudy and your family as well. I’m always a glass 1/2 full kind of gal. Hugs..
I know.
I understand.
How can you feel such love, such pain, and such numbness at the same time? There is nothing anyone can say; nothing anyone can do. The diagnosis determines the fate but not the timeline or journey that each child will take. I miss Katie every single day, but interestingly, the pain of being without her is only equal (albeit different) to the pain of watching her suffer. I am filled with joy when I think of her smiling face- the same joy when I see pictures of your heroic son. Rolf, you and Trish are an inspiration because you “get it.” All you have is all that you need- love. There’s nothing more, nothing less.
The pain you are experiencing breaks my heart because I know how it feels. It’s a deep and constant pain that flairs and presents itself at the oddest times. However, I know that you know that Rudy’s unique journey is leaving an indelible mark on countless people. He has already put more lives in perspective than I would ever hope to do! It may be unknown as to whether or not he’ll make it through that bottle of aspirin, but it’s very well known that your son is amazing, and that his siblings and parents are equally amazing for their role in this unwanted adventure.
I know that you’ll find a renewed spiritedness. Stay strong, but more importantly, stay honest about your emotions. We think about you all the time! Much love from your friends in Connecticut!
Oh what an intense post. Thank you for sharing your heart and what you go through probably on a daily basis! What a profound journey it is. Not one I’d wish for but endoubtedly changing you and drawing you close to God. Loving you lots today and praying for the best for all family members and the ability to somehow find joy and immense love in all the heartache and waiting, and unknown.
This is a wonderful, heartbreaking post, Rolf. God’s peace and grace to all of you as you walk the daily road of love with each other.
Thanks for telling it like it really is. So often my thoughts have been similar, wondering what you are thinking. We constantly keep you in our prayers. What a difficult journey God has led you on.
Hallo Rolf, eigentlich wollte ich zum Thema “Numbness” etwas schreiben … aber irgendwie hat es mir die Sprache verschlagen. Ich finde es toll, dass Du so ehrlich über so etwas schreiben kannst und es hat mich auch dementsprechend mitgenommen.
Es ist einfach beindrucken, dass Ihr alles so toll meistert und ihr so eine tolle Familie seid!
Vielleicht hilft es auch ein wenig zu wissen, dass wir Euch immer im Kopf und Herzen haben und viel an Euch denken!
Alles Liebe, Astrid & Wolfgang.