When I was a little girl, I got a TON of stomach aches…strangely occuring on Monday mornings before school and most severe at the end of holiday breaks or summer vacations! 🙂 I eventually outgrew the nervous-tummy attacks (when I graduated from college! Ha Ha) and haven’t given my strange childhood disease much thought since then until this morning when I woke up with those familiar nagging symptoms of “the nervous tummy”. It has been brewing for a week or so as I anticipated facing today but, to be honest, I’m really surprised by the way I’m feeling.
Today is the one-year anniversary of Rudy’s initial diagnosis at a routine ultrasound when I was 27 weeks pregnant. I actually expected to approach this significant date on our family’s calendar feeling deep gratitude and joy over the fact that Rudy is with us and that our family made it through what turned out to be the greatest series of challenges we’ve ever faced. The reality, though, is that I’m feeling pretty sad today…there’s a big cloud hanging overhead and that nervous tummy is just churning away. Ironically, Rudy has an appointment with his cardiologist today making the memory of our first meeting with Dr. Harake and the grim confirmation a year ago even more vivid.
Not being one to dwell on the negative and because there is so much to be thankful for and celebrate, I feel a little blind-sided by the heaviness and grief. I’m sure there are many layers to what I’m feeling today…but I think that as much as today signifies the amazing steps Rudy has made in his journey of survival and recovery; it is also a vivid reminder that he still has only half a heart, that, just like last year at this time, we have an open-heart surgery and all the unknowns associated with it ahead of us and that we still need to make the conscious effort to take life one day at a time.
This is a little tangential but…I sat on the couch yesterday evening with tears pouring down my face as I watched the news coverage of Laura Ling and Euna Lee being reunited with their families. I felt so deeply the relief that Laura’s mom must have experienced when she hugged her daughter after months of unimaginable worry and it dawned on me that that’s what’s missing…after all these months with Rudy, we haven’t had our “sigh of relief”…and given the nature of Rudy’s defect, not sure we ever will. Hmmm, I’ll think about that another day.
Note to self, though, if I had had the presence of mind or the energy to do so, I would have planned a trip to Knotts Berry Farm this week…there’s nothin’ like a Knotts Funnel Cake or two to distract you from the blues!!
Rudy's Beat 
Remember how a run to “Jack In The Box” used to do wonders? Maybe Knott’s Berry Farm is not the answer–try a “Jack In The Box” taco.
Love you, Mama
Your emotional and physiological responses are right on target, Trish. You’ve been given the great gift of a relatively complication-free few months, with Rudy at home and flourishing. I am so glad and grateful for these months! But…your reality is what it has been: you have a critically ill baby with many months/years of difficult treatment and recovery ahead of you. OF COURSE this is a tough anniversary – and our bodies – as fearfully and wonderfully made as they are (even when they’re broken, as you and your family have discovered with Rudy’s entrance into your lives) – have a logic all their own. Yours is reminding you of the journey you’ve been on this last year. It’s that old roller-coaster showing up again, and an upset tummy is to be expected. Make room for the grief again, Trish. It is part of this experience, a vital and necessary part, actually. A part that needs to be experienced and lived through and with, not neglected or pushed aside. It’s not the whole picture – there is deep joy, there is gratitude, there is the recognition of God’s loving and grace-filled presence even in the middle of the messy stuff. But it is part of the picture and will surface over and over again on the road ahead. Please know that you never have to apologize for these feelings, or even try to explain them. They’re just there – a reminder of your humanity, a recognition of our need for an incarnate Savior who understands our frame from the inside out.
I have, hanging just outside my office door, a beautiful calligraphy (done for my by my very talented sister-in-law) of a quote from Rainer Maria Rilke, a German poet from the early 20th century, in his little book, “Letters to a Young Poet.” Maybe it will prove helpful to you as you continue to walk this road, filled with so many unanswerable questions. Rilke is writing to a young friend:
“You are so young, you have not even begun, and I would like to beg you, dear one, as well as I can, to have patience with everything that is unsolved in your heart and to try to cherish the questions themselves, like closed rooms and like books written in a very strange tongue.
“Do not search now for the Answers which cannot be given you because you could not live them. It is a matter of living everything. Live the questions now. Perhaps you will then, gradually, without even noticing it, one distant day, live right into the answers.”
Dear Trish, you are now living the questions – as are we all, in one way or another. So live them, let them breathe, allow space for them, grieve over them, let the Spirit of our good and gracious God infuse them, bringing comfort, joy and hope. You’re doing a magnificent job. Thanks so much for sharing your heart with those of us who pray for you.
Hey, Trish…I remember those tummy aches you had and sure am sorry they are back. You all have been through so much the past year, but I must say, just as I did back then, that God would use you all to glorify Himself through all of this and you know what? You have!! The manner in which each of you – Rolf, you, Wilson, Max, Livy and even, Rudy – has demonstrated faith, vulnerability, courage, contentment in the face of the unknown, patience, humility, humor – I could go on and on – just testifies of the Spirit in which you walk daily.
Thank you for sharing so honestly and for encouraging me by just being who you are!
Love to you and all!
Steve
PS – That last picture is one of the best so far! I can’t wait to meet the little guy someday. He is a charmer for sure!
Rudy is the cutest baby. He keeps getting cuter. I am sorry you feel down my friend. This too shall pass. I love you big time and am hugging through your computer screen.
This is such an amazing last picture….personality so clear!
Rudy looks amazing…he would put a smile on anyones face, Bless all of you, Nick’s Grandma
Precious Trish, Here are extra hugs for you ALL.
Share your heavy heart with the Lord and us.
You know he has wide shoulders and we will try and carry
some for you too.
LOve and Bussi O+O
Trish…every comment, is with such emotion and candor, it just puts me in the place of being a reader touched by a great story of faith and trial. Then I WAKE UP and realize this is YOURS and Rudy’s story, and that you are living this everyday for real. I am so inspired when I read what you and Rolf write. When I look at Rudy now, and remember what he has endured, and see that little smile, I am blessed knowing that God has him in His hands.
Trish, Thank you so much for sharing your heart with us! Such a reminder that even while things are going well for Rudy, how much you all still need prayer! And great to have some new specifics to pray for your Mama’s heart! HUGS!
Teresa
Dearest Trish (and Rolf)-
thanks for sharing so eloquently and personally. Being reminded of this anniversary for you, might explain why I’ve felt “off” today as well.
Indeed, speaking from personal experience, grief is mighty powerful and blindsides at unexpected times; embracing it as you are is the only way through it. Waterfalls of tears can be pretty cathartic too. Rilke’s quote (Thanks Diana) is one of my favorite as well. As you live the questions one day at a time, even amidst those darker days, I keep you all in my thoughts and prayers that you may find solace, strength, Light, and deep joy.
Love, Andi
I’m praying for you, Trish. All these feelings you’re having sound so understandable in light of this time of year. It’s been quite a year! I love the lighthearted pics of Rudy, though. Just seeing those makes my day!
Trish,
I am sorry you aren’t feeling well today but understand and hope that you give yourself the space to have some not so great moments.
We are 12 1/2 years into this journey and there hasn’t been, at least for me a “sigh of relief” though I wish I could tell you different. It does become an undercurrent that goes deep until you almost can’t feel it some times and comes back strong at others but it is always there. I feel privileged, though I’m sure that sounds strange, to truly know what living for the day is really about through our family’s experience.
When Garrett came home from his Norwood, I remember finally crashing emotionally a fews weeks after I got home. One of my neighbors said that that I had been running on adremnaline for months and this was the first time I really had time to digest what was going on and allow myself some grieving. Garrett is our first child so I had lost the dream of a healthy baby. I think for parents who have other children it can be even harder because you know what a normal baby experience is like.
Please give yourself the okay to grieve and work through your feelings about it. Keeping it al bottled up and being strong 24/7 isn’t going to work in the long run. You and your family have been so strong and fantastic through all of this but don’t forget to take care of yourselves as well.
I hope you feel better soon. Rudy looks great and has the absolute best facial expressions of a baby that I’ve every seen. 🙂
Kathy
I have felt that nagging stomach ache so many times before. It happened to me a few weeks before each of our cardiologist appointments…it didn’t matter if they were every month, every six months or now every year! On the negative side, it’s waiting for the ball to drop and something to be wrong, on the positive side, it’s excitment to show off how far we’ve come. And when Jack F. was born, we experienced everything again, but as observers, and again when Katie was born, and again with Rudy. Each different in so many ways, yet still too familiar to deny. It’s good to look back, see where you’ve been, what you have acheived, and then to look forward to the future and what’s still to come.
Savor today and all that it brings.
I am so sorry that you are feeling low, Trish. My prayers are with you. It’s not Knott’s but downtown they are serving up some wicked desserts at the food stands….VIVA LA,BABY!!! RUdy looks like such a little man in those photos, especially that last one. Too dang cute!
I wish I could have been there to give you a hug!!! You know….this is a good reminder to me to beef up those prayers for you guys…..in the past their was so much instensity, adrenaline was often high, and there were alot of prayers to the Lord on your behalf!
Go ahead and cry dear friend…..it’s been a long haul and you need a good cry….
Love you!
Oh-Rudy looks so good!!!!!
Honey, I have read your blog several times. I can only say that you and Rolf are an inspiration to me. My situation seems so minor compared to what you folks face each day. I love you for what you do for Rudy. Each picture shows a more beautiful little boy, who one day will grow up and realize how lucky he was that God Chose you and the family in which to be born. Never apologize for being you and the precious gigy of God. Love, Dad P.S.The word is “Gift” of God. Sorry.
Dear Trish. OMG, I cannot believe it has been a year already! As always, I am moved by your honesty, but more so the courage and faith that you and your family have demonstrated. It makes my semi-dimwit issues seem so, well, dimwitted!!! LOL! As I always make it a point now though, take things not even one day at a time, but one step at a time. Rudy may have half a heart, but it is one that is a whole soul filled with love from his family and so many friends that love him!!! You know, there are people who have whole hearts, big wallets, etc., but they are so empty inside!! Amazing, isn’t it? Little Rudy just savors every moment of the beautiful heart that God has healed. Take heart (pun intended! LOL!), greater things are yet to come for all of you!!
xoxoxo,
Tanya
Hi my dear friend, I also had tummy aches as a child so I remember that feeling.
I also have an awesome funnel cake recipe that is super easy if you want to make them at home! You don’t even need a funnel!
rudy is one handsome little man!
Hi Trish,
Thank you for sharing your tummy ache with us! I am so encouraged by your steadfast faith. I would love, love, love to come by for a visit!!