The past week and a half has been filled with a number of doctor visits and with each new consultation, I hand over Rudy’s discharge summary and we skim the details of his 6 month stay in the ICU. That coupled with the time I’ve spent going through 100s of pictures for the slideshow I’ve been working on are staggering reminders of all that Rudy has been through. I remember praying over and over on those darkest days “Please let us get him home…just for one day”. I don’t mean to sound overly dramatic but I didn’t want Rudy to die without feeling the sun on his face, without hearing the crash of waves at our nearby beach, without experiencing the sights, sounds and smells of home surrounded by his 3 older siblings. I wanted all of this for Rudy but, to be totally honest, I wanted it for our family as well…I wanted our family to experience life together with Rudy. There were times in our journey since Rudy’s diagnosis that I hoped for just one day with him outside the confines of the hospital walls and that anything beyond that would be “icing on the cake”. Well, here we are 10 days post-discharge and knee-deep in icing, so to speak. 🙂
Life in the CTICU/PICU taught me to literally take life one day at a time and to NOT take for granted any time we had with Rudy. The hundreds of hours spent in the hospital allowed me and Rolf to be centrally focused on Rudy’s condition, to capture every moment as best we could and to take the time to process what was happening on the blog…luxuries, really, because all helped me to stop and cherish what’s important. Well, I’m settling back into my home that I enjoy with my family that I love and deeply grateful for the 10 days we’ve had Rudy home with us. In the midst of all the adjustments of having Rudy home and accepting my new role at home, I feel the challenge for me will now be to apply the lessons I learned in recent months to our family’s life from this point forward…that as the demands of “normal” life start to creep back into my focus, my commitment to take life one day at a time, not sweat the small stuff and truly cherish my husband and ALL my kids remains in the forefront of my mind and heart. I know it sounds cliche but whether we are faced with a life-threatening condition or not, our days are numbered and I want to respond to life not as if I’m entitled to tomorrow but, instead, as if tomorrow is “icing on the cake” no matter what it holds. Unfortunately, this is so much easier to articulate than it is to practice…how quickly my good intentions fly out the window when a phone call with a not-so-helpful customer service rep from a medical supply company makes my blood boil OR when I begin to resent my responsibilities in the home out of sheer exhaustion…a worthy challenge, indeed!
On the Rudy-front, we have had a good week. As I mentioned, we’ve been to a few doctor appointments and a few pharmacies. We’re in the process of weaning him off methadone (withdrawal treatment), prednisone (steroid) and diuril (diaretic) but we’ve added two heart medications as ordered by the local peds cardiologist. The daily schedule of meds, diaper changes, trach and g-tube care, periodic suctioning, time on the mister, feeds, etc still makes for a full day but it is easier today than it was last week which makes it safe to assume it will be even easier next week. He still isn’t smiling but his brow isn’t furrowed continually so I think he is lightening up. I haven’t ventured outside home much except to go to doctor appointments but even that feels less intimidating. Rudy had his first fitful night last night since being home which left me and Rolf a little foggy-headed today and he remained pretty uncomfortable for most of the day so we’ll keep a close eye on him…not sure whether it’s withdrawal symptoms from the methadone wean OR teething (two teeth have now cut through!) so we watch and wait. He is a bit backwards…mad and fitful until we got to the diagnostic lab today and then he fell asleep while they stuck him with a needle for the blood draw!! Funny boy…
FYI: Stay tuned for upcoming details of Rudy’s Debut Party we hope to have in mid-May…an opportunity to have his baby dedication as well as thank all of you who have supported our family during this time and helped pray Rudy home!!!! Family, Friends, Faith – many reasons to celebrate! We sure hope you can join us…
22 thoughts on “Icing on the Cake”
Such good news! Ten days- I’ll bet it seems like many more…I know how time consuming his care must be. Worth every second though! Rudy looks great – good job. Your family is amazing. The faith you have in our Father is so evident in every word you write. Blessings to you all! Cindy
Love, hugs, and prayers for you all. I can only imagine the weariness you and Rolf must feel. His picture is beautiful. Your writing is always unique and helps us all know what is going on. Big hug! Donna
This post brought tears to my eyes! I am so thrilled that Rudy is 10 days into his new home life and that all is going well. I am told that the first week home is the most difficult, but that it gets easier as the routine sets in. I heard that from Emma’s mom who also prays for Rudy along with us. Emma has CF and is now 6 years old. Life may be a challenge with a special needs child but also a big blessing.
Love, hugs and kisses.
Hesitant to add to your burdens, but, nevertheless, I’m putting a comb and hair brush set in the mail TODAY!
Praying for you all…so great to hear an update. Rudy keeps looking better and better in his pictures. I am very excited for the Rudy party; ANY excuse to get up there and see you guys is something to look forward to! Thank you for your words, Trish. You are an inspiration to me. There is a verse somewhere that says, “Even in darkness light dawns for the upright.” I just keep seeing that all over your life. Love you!
Oh, precious Rudy! You have been through so much .. we pray you can feel some peace in your little mind and body as you survive this incredible journey. When I was a baby and had earaches, teething or any distress, my mom had nearby my two grandmas and several aunts to help her care for me. I long to be with you but am trusting the Lord will bless your family with good health, strength, continued love and commitment to your needs. You have been placed in a loving home with very special parents and siblings–my heart swells with thoughts of all of you.
I am so happy for your time at home as a family. Surely this is very nurturing for Rudy and so gratifying for you and all of your children to participate in the task of caring for Rudy. Continued prayers for Rudy and for your family.
What precious pictures of Rudy…I’m just lovin’ all that hair!! 🙂 Trish, it must feel like the days of being a “first time” mom, but just as you adjusted to those days and raised those amazing 3 big kids…these days with Rudy will become second nature to you as well. You’re such a superstar!! Blessings on you all and I can’t wait to come over for some snuggle time with Rudy. Hugs, Beck
Trish, I thank you once again for putting into words what you are thinking and feeling. And you are right – it is easier to articulate than it is to live. But my dear, you are living it. Blood boiling impatience and all! Because what you’re being asked to do is find that balance point between peaceful acceptance and even joy in the minute-to-minute gift of life (even though it’s a complicated, sometimes difficult and often terrifying kind of life) AND the dogged, determined, never-give-up, tenaciousness of a bulldog which is such an important part of this unique roller coaster ride you’ve been handed. BOTH of those emotions/experiences/character traits are needed to make it up the steep hills and down the crashing, whirling valleys of your life right now. It’s that blood-boiling impatience that will keep you fighting for your son. Yes, of course, it needs tempering with the ‘attitude of gratitude’ that you are so exquisitely aware of these days – but don’t ever let go of that bulldog! Because (to mix my animal metaphors just a little :>) that mother tigress piece is vitally important in your role as vigilant watchperson for your son. In many ways, it will be that fighting spirit, as well as the peaceful acceptance of each day, that will get all of you through whatever it is that comes next. Of course, you will be too tired. You will be grouchy and cranky and short with the people you love. But you will also be attentive, creative, gentle, loving, kind and funny. You will also be strong and grateful and overwhelmed with the deepness of your love and commitment to these dear people you live with every day. We all have seen these things in your words and pictures over these last six months and we celebrate them! And with you, we offer thanksgiving to God for his unspeakable love and mercy in the midst of devastation and mind-blowing fear. Rudy is home. Thanks be to God. And he will smile very soon now, I have no doubt. He’s watching, taking it all in, experiencing at his six-month-old level what ‘normal’ life is like, and slowly and surely, he is learning to trust it. I can hardly wait for the picture.
Much love to you all,
Poor Rudy! He’s probably wondering when the people in the scrubs are going to go away! With all the appointments I don’t know how you are keeping up with Rudy and the other kids! But you are absolutely right, this sort of experience gives you a knew attitude on life. Although you still get frustrated…for us it’s the insurance companies…you realize the so many people worry about things that are out of their control Control what you can, and the rest, take it in stride as it comes. So glad that “family life” is surrounding Rudy with love.
Continued prayers for peace and recovery.
Your words are a great reminder to me that every day is icing on the cake, even though we haven’t been through what you have, it is a good thing for all of us to take one day at a time. Especially with our precious little ones!
Rudy looks so good, I’m in awe! His hair is outrageous! Can’t wait to see you in person my friend! We’re hanging in there here in Altadena.
Praying with you for the mundane stuff and the baby fog – that is something I can relate to! I think Rudy misses the hospital environment and that’s why he fell asleep in the lab. Wish we could come to the party!
Rudy, I can see how much more peaceful you look….can’t wait to see you and kiss those chubby cheeks!!!
I briefly climbed into your heart today as you shared the joys and frustrations of having Rudy home. You have taught me so much about life and the “now” of each moment. Sharing your life with us is a legacy that follows all of us around, especially Rudy and your kids. You have carved a big space in my heart. xxooR
Wish we could be there for the big celebration too! We’ll have satellite party in KY!
Well put Trish!!! Thank you for sharing these photos and your journey ‘post-Rudy discharge’. I honestly do not even take things one day at a time, but one STEP at a time!! I do not even know what I will be doing in the next five minutes, let alone the next day!! LOL! Keep the faith dear Geylings!!! Be strong! God is in control!!
Love, kisses and lots of hugs!
you are living proof that our suffering/struggles/challenges often bring deeper faith and more trust….and wisdom about the gift – the icing – that each new day brings. blessings upon blessings to you all
Cant’ wait for the coming out/debut party! I love that kids hair. So glad he is home. It was so great to see you and Rudy at the mission the other day. So glad you all and Rudy get to taste the icing.
We’re sending you our love from over on the East coast with a dose of Oma/Opa hugs and kisses as well. Boy do we wish we could join in the celebration too… happy planning in the meantime, esp. if that helps you get through the tough moments of daily life.
Andrea and the girls
going through so much, thinking of life different than the Normal People……being thankful for each day……..yet…..we forget we are normal; and at times little things get to us…….you do your best and don’t think you can’t yell, get mad, frustrated…..maybe even Rudy is feeling some of those things……….peace, Dawn’s Mom
You and your family are my heros! Thank you for how you’ve shared your journey, ups and downs; fears, joy, and praise of the Father. You have been my reality check for today.
Much love and blessings on all of you,
PS Love that hair, Rudy!!! 🙂
Thankyou Trish for articulating that so well; most of us can’t even do that. You and Rolf, Rudy and the rest of your family remain in our prayers! In Christ, Ann Sagi and Sara