Now What?

Boy, I sure wish I knew the answer to that question.  Although there weren’t any major surprises in the results of Rudy’s heart cath on Thursday, I have to say the disappointment over his lungs is weighing heavy on me.  I guess I expected his lungs to show significant improvement because he is so much bigger, stronger and looks so much healthier than ever before.  To hear Dr. Dan say “he’s not a strong candidate for the Glenn at this point” took me by surprise and left my stomach in knots.  Deeply disappointed yes, but at the same time, I don’t want the disappointment to overshadow the encouraging report on his heart.  God has allowed Rudy to thrive with a shunt he was expected to outgrow months ago!  One of many miracles along the way that is getting us from point A to point B.  And so we wait with our weight of mixed emotions and re-align our hearts and minds to living in limbo a little longer (the alliteration there is kind of fun to say 5 times real fast).   We haven’t heard word yet from the pulmonologist whose consult will hopefully help direct the cardiac team in their decision-making process but Rudy does see Dr. Harake (SB cardiologist) tomorrow morning so we hope, hope, hope he has some news for us. 

To add to the list of reasons to worry, both boys had issues surface this week that were out of character for them and it’s hard to know whether it’s just normal pre-teen boy stuff or stress-related behavior.  I feel like Steve Martin in the movie “Parenthood”.  Have you seen that movie?  I remember thinking it was funny when I first saw it in college but now I watch it and just howl with laughter as I can TOTALLY relate to it’s portrayal of parenthood.  Anyway, there’s this one scene when Steve Martin is distressed over his young son’s issues with anxiety and is fearful that how he responds in that moment will mean the difference between his son becoming a well-adjusted, valedictorian college graduate OR the kid who locks himself in the clock tower on campus in a shooting rampage!  That’s how I’m feeling this week…like I could “blow it” on so many levels…well, not “could blow it”, “HAVE blown it” in the way I’m handling life and my kids in this big bubble of disappointment and fear.  Today I wrestle with the question “how do you help your kids navigate a journey like this in a healthy, hopeful way when you are having a week when you can’t seem to do that for yourself?”.  

I’ve been so consumed by how I’M feeling that I totally forgot to commemorate Rudy turning 16 months old on Monday!!!  SIXTEEN months…that means we’ve had Rudy home for over 9 months!  With all the joys, heaviness, victories and stomach knots…it continues to be remarkable!!!!

Happy 16 months on February 1st!

23 thoughts on “Now What?

  1. Our kids sure do feel our anxieities…but, hey! that’s life. They also see where we turn with our anxieties….

    Hang in there dears….You are all loved and all safe in the Lord’s hands.

    love you.

  2. Being a parent is hard. Being a parent of four is even harder. And although you are daily in my prayers, sometimes I forget to pray especially for Max and Wilson and Olivia. Thanks for reminding me. How great it is that God knows each one of the Geylings intimately and He gives us this promise: “Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.” John 14:27

  3. I’ve been feeling the same way about last week’s (dis)appointment. BUT I’m saying “NO” to despair and trusting in the One who is able.

    By the way, I think you and Rolf are doing an incredible job with all four of your children:)

    I love you!

  4. Feeling helpless and wishing we can do more to be there and to walk through this all together. We so appreciate your honest but hopeful and faithful spirit as you take this day-to-day. We have been with you since your first was born and watched you and Rolf be incredible parents through good and the challenging times and I can honestly say your kids will be ok – more than just OK – healthy, whole, individuals who will continue to bless you. You have provided them with such a strong, healthy, godly, family-orientated culture that provides so much strength and depth that it can and will absorb any individual moments of “blowing it.” Trust this.

    Bob and Kathy

  5. As a mother of four boys I KNOW that raising children is incredibly hard when things are “normal” and extremely difficult when times are hard. In addition to that I was never given an instruction manual to follow when things began to go haywire, so I had to muddle through with the grace of God and my own intuition. After following you for these 16 months, I know for sure that you and Rolf are doing a terrific job with your family and you will continue to parent in an excellent fashion–BUT there will be some bumps in the road. You will manage those bumps quite well because you have a whole host of angels watching over you, your prayer support is superb, and God is holding all of you in His most capable and loving hands. Sit still for a moment and feel Him holding you–and know that I am praying for ALL of you.

  6. There’s little comfort that we can offer with this short messages. Just know this- (1) feel whatever you are feeling; don’t let it fester. Embrace it and live it, but don’t wallow in it. (2) Since the moment of or first interactions Vickie and I look to you, your husband, and your family as a model of how a family should be. Your pain and frustration is just a reminder that you too are “mere mortals”, but yet hat knowledge only intensifies our admiration.

    What you have done is amazing…what you continue to do is amazing. I can’t promise smooth sailing, that would be unfair of me, but I can assure you that the only course of action is love, hope, and when all else fails- “left, right, left, right”- one foot in front of the other.

    Love and best wishes from Alan, Vickie, and baby Gavin.

  7. I’m praying for Rudy regularly. I just want to encourage you that our kids will do things that we least expect them to, but they can grow up and be great adults. Jenny (you know the struggles we had with her) is married with three boys and also raising two step-children. Wesley is doing great also. There were some behaviors that I really didn’t expect from him when he was young, but they happened and he outgrew them. I was not my best with Jenny and I feel like it was very hard for Wesley, but God worked in both of their lives in spite of me and the circumstances.

  8. Happy 16 Months! You sure are cute! Praying for your lungs to be where they need to be for your next step. Praying for your sweet parents and all that life throws at them. They are awesome and they are doing a super job. Prayers, hugs and kisses from our whole family to yours.

  9. Dear, dear Trish and Rolf,
    when you have those low moments, please try to remember how much you are loved and admired as incredible human beings and as parents of 4 beautiful and grounded children.
    sending lots of love and prayers your way from Boston,

  10. You CAN DO this, Trish. You are tired and sleep deprived but pace your days and lighten your load by taking every moment you can for yourself. It is okay to cull your TO DO List and do something for yourself. Your standards are very high so you can still excel by lowering the bar. Remember, You ARE Special and we all love you MORE! ….Mama

  11. Looking at Rudy’s happy face, you can’t help but smile! Although all this uncertainty must be difficult, what a blessing that we know who holds the future and that he will work good out of our mistakes, because we love Him.
    I appreciate your honesty and can so easily identify with feeling inadequate,
    but it is just another opportunity to point to Jesus and His adequacy. The thing I’ve taught Luci the best, is how to make mistakes and ask for forgive-
    ness…hopefully she is “catching” how God’s grace and mercy is real.
    “Love covers over a multitude of sins” Love you

  12. As Erma Bombeck put it (paraphrased), God chose you specifically as Guardian Angels for all your children, not just Rudy. He chose you because he knew that you would be the best possible parents those children could have. He realized the Geyling children would not need saints in heaven to watch over them because they have Trish and Rolf on earth. He has not been disappointed. He does not expect perfection. All He asks is that you do the best with HIS assistance in your life and He is never wrong. You have shown time and again that He is with you and besideyou and sometimes carrying you. He will not let you let those children down. Just keep doing the awesome job you are doing, know that you have countless friends praying for you and loving you. Just keep on truckin’

  13. I can tell your heart is so heavy and it makes me sad. I can’t imagine the emotions and stress of caring for Rudy’s special needs while maintaining a marriage and raising other kids, not to mention working to make a living. My heart goes out to you all. I will continue to keep your family in my prayers, all of you. God Bless, Cheryl (a friend and fellow church member of Dick and JoAnn)

  14. This makes me sad and it just plain sucks,but God is good and has shown so many miracles through this all. Hang in there, I remember what I was like as a preteen and it wasn’t pretty, you both are great parents and your kids are blessed to have you. Praying for you all! Love, Kelly

  15. Well wishes from strangers in Charlotte NC. My wife Jacqui and I have followed Rudy’s story over the past year. Stay strong. You and Rudy are an insperation to more people than you could ever know.

    My son Jackson is a couple of months younger than Rudy. Due to lung problems, he is also trached and developmentally delayed. (But gaining) He needs the “gentle” pressure of a home vent to keep his lungs open. His work of breathing is WAY down and no longer requires oxygen. He uses all the extra energy to grow and focus on learning new things. I hope such a simple change could be helpful and make a big difference in Rudy’s lung function/healing and overall development.

    Keep up hope! It is AMAZING what a prayer and a good pulmonologist can do.

  16. Please know, that as you articulate your fears, our hearts and prayers go out to you ALL. This journey is unimaginable, and you have shown yourselves faithful to God, and He to you. You have inspired a multitude of people with your courage and commitment to doing all you can for this beautiful child. God is WORKING, we just know it.

  17. You and I have already ‘talked’ about some of this, Trish – just read through all these lovely notes and pay particular attention to the loving words of your very wise mama – deep breath, self-care, re-charge. Your kids are okay, you are okay – hang in.

  18. Big hugs to you – loving all of you from Dixie, with a banjo on our knee. He is faithful, he is able, more than able to handle anything that comes your way. (uh-oh I just revealed my age with that quote, didn’t i?)

  19. Trish,
    The fact that you stop to reflect on the situation means you are doing it all right!!! No one plays errorless ball – not your kids, not your friends, not even Rolf… so mistakes in judgement will happen and when they do, reflecting on them is the way we grow, learn, and fully experience life. Taking a minute to stop and ask questions is the best lesson you have been teaching your children since they were little. They are sensitive to other people because you have taught them to be aware of everyone’s feelings. If they didn’t act out at this critical moment, we would all be even more worried. You (and the boys) are doing it all right!
    Love you dearly! Lisa

  20. Sure sometimes you feel you’ve been pushed back or Down; but Rudy is at home with his loving family and doing pretty good, hope his smiles give you that extra strength you need. Nick’s Grandma

  21. he lights up the whole room! thank you for being so positive in the midst of some heavy news. it is a reminder and inspiration to us.

    we are praying for the upcoming appointments with pulmonology, and the decisions for cardiology.

    in Him,
    the Nelsons

  22. How do you help your kids navigate these circumstances in a healthy way? Just the way you have been doing it with honesty, vulnerablity and a total openess to the Father. I am in awe of how you have handled these past months. I will be ordering one of your magnificent heart Trish. Thanks for honoring all HLHS children. I lost my nephew to the HLHS 25 years ago.

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