The little man is 23 weeks old today. The day came and went with little drama which is always nice. To celebrate I was successful at fixing Rudy’s fishy mobile which has been sluggish for a couple of weeks. I don’t know how much longer it will last but for today he was able to enjoy the familiar sounds of a much loved crib companion…he isn’t reaching for the flying fish yet but he sure does like to stare at his little friends as they go round and round. As with his breathing and feeding, Rudy has alot of ground to make up with his OT and PT. He hasn’t had many treatments at all since his first stomach surgery 2 weeks ago and I’ve noticed he resists any movement of his arms and legs. Prior to the hiccups of last week, the range-of-motion exercises we were doing seemed to be loosening things up so it’ll be back to square one again when OT and PT start back up again. He did gain some ground off the vent today, though. Dr. Andy ordered his sprints on the trach collar to be bumped up to 90 minutes which he did 3 times today with great ease! There is still fluid draining from his stomach cavity but it continues to decrease slowly. The surgical team came in this morning during early morning rounds and estimated we might be able to start feeds again early next week. We’ll see…
All in all, we are moving forward and in a more encouraging place than last week, however, I did have a hard time believing today that we’ll ever leave this place. Even if Rudy does get to come home in a few weeks, it won’t be long until we’ll have to come back and do it all again. My prayers are starting to shift a bit…I’m focusing more and more on quality of life prayers for Rudy. It is taking him such a long time to get to a stable place and even though I know the odds of him leading a “normal” life are slim, I do pray for a life that is lived more outside of hospitals than in. I pray that the non-heart issues he is facing will ultimately resolve themselves and he will not develop chronic struggles with his digestive system, respiratory system and the failure of other organs. This has certainly been my hope (and, quite frankly, a naive expectation) from day one but I have also learned in the almost 6 months since then that there are NEVER any guarantees no matter how aggressive the treatment may be and the statistics for babies like Rudy can leave you feeling pretty grim. I’ve found that the non-crisis days, like today, leave me with too much time to think…and that’s when fear sets in. I’m so glad I can bring those fears before God – I just wish I was better at letting them go before they get the best of me. So, tonight I end the day thankful for the calm day Rudy had but also challenged in truly giving my fears over to God. ‘Praying the next couple of days for Rudy are days of great gain…on all fronts. Thank you for carrying us all through your prayers…
Rudy's Beat 
Sweet dreams to you and Rudy, dear Trish. What a precious picture of our little darlin’. Wherever God is leading us with this little baby’s life is not yet known to us, but rest assured His purpose will be revealed and our continued faith will bring the strength we need–one day at a time. The prayers of a multitude of folks continue and will sustain you and your family–hang in there, honey. We love you.
as always Trish, i appreciate you sharing your thoughts, hopes, fears, doubts, questions, emotions….. i think these things lead us in our prayers. we are still with you. kiss Rudy on the forehead and tell him the Lawlers love him. or maybe a kiss on each of those marvelous cheeks!
Your dear mom is so right on! I would only dissect her wise words this way: we receive the strength we need MINUTE BY MINUTE. Sometimes a whole day is just too much to even think about. Trish, your vulnerability and honesty are so refreshing and welcome. Of course, the fears build and build – it’s a part of this horrific learning curve you’re on: dealing with a severely distressed and much-loved child. With you, I pray that Rudy can have experiences of quality life outside the hospital which has been his home thus far.
I cannot imagine what you are dealing with – but I would encourage you to avoid the internet (!!) and to remember that your precious boy is not a statistic. My father was a mathematician/statistician (he even wrote a statistics textbook) and he would be the first to tell you that statistics are just numbers and can be interpreted to mean just about anything you want them to mean. Please do not lose heart based upon numbers – although I understand full well the almost morbid fascination those numbers/articles can hold for you in the midst of your terribly difficult situation.
Being a follower of Jesus often requires of us that we find a balancing point between realistic assessment of our options and unreasonable faith in the seemingly impossible. This is true because we serve an incarnate Savior – fully human and fully divine We must recognize the realities of life in a fallen and broken world – and yet, and yet….God is able. We cannot even hope to understand, much less explain to someone else, how it is that God is able, how it is that every once in a while, God chooses to show that ability by means of what appears to our eyes to be miraculous intervention. And we sometimes come to expect that ‘miracles’ will look like complete physical healing. But this is rarely the case – it happens, indeed, it happens. But it is rare. It is wonderful, mind-blowing, worth praising and shouting and thanking God for, and it is rare. But there are so many other ways that miracles happen!! Miracles like these: this life, this little, sweet, struggling life that has been given to you has had impact on more people for the work of God’s kingdom than most of us who live to be eighty will ever see. This life, this tiny, amazing, beautiful life has drawn people to their knees with greater frequency than many have experienced in years. This life, this wonder-filled, pain-filled, beauty-filled life has spoken to hundreds – maybe thousands of people – of the grace and goodness of God at work in our world – despite the struggle, despite the pain. Rudy Geyling is a beautiful gift of God, reminding us all of our deep brokenness, our need for a love that passes understanding, our need for a Savior. And whether or not God chooses to intervene with complete physical healing in Rudy’s life, God loves Rudy even more than you do and will be at work in him as long as he draws breath. Rudy’s life has purpose and meaning and, oh, how I hope and pray, that life will continue for a very long time. However long that is, may you and your family find peace and assurance that Rudy is ultimately safe, he is ultimately whole, he is ultimately well. This may not seem like enough for you to hang onto when the heebie-jeebies take over, so I pray for you, dear Trish, that the peace of God will just seep into all those places of fear, filling them with even more love for your son, for your family, for yourself, for your Savior. For perfect love casts out fear – so I pray for you LOVE, love, love in abundance, falling like a cloak over you this night, overflowing even your body with tears of gratitude. Those tears are God’s gift to you, releasing tension, relieving pain, bathing your spirit with release and relief. Sleep well, Trish. Rest in hope.
Love to you my friend, Praying daily for your strength and wisdom, and for Rudy to live the best life possible. He’s getting to be a big boy!
all your fears and feelings are understandable………no matter how much faith we have…….hope today is a good day for all…….peace, Dawn’s mom
Virtual hug!! Love you and continue to pray for you all!
special hug for you my dear Trish and kisses for Rudy.
The steadfast love of the Lord never ceases. His mercies never come to an end……dearest Trish….may you continue to drink from this well of love and you will know his new mercies today!!! You are so special, but you are finite….let the Infinte One provide you with everything you need just for today….
My heart goes out to you Trish and I am always amazed at your strength during these hard times. You are an inspiration and you are always in my prayers. Happy Birthday, Rudy!
My dear sweet friend I know what you are going through. There are going to be those days where it is hard. We have those days so that we can have the good ones. Rudy is so precious and has so much to teach us with his strength and love. He is truly a gift and we are loving him from afar. We are inspired everyday by his gusto. He is stronger than you think. He can do this and we beleive in him. I know how difficult it may seem at times but know that He is always looking over it all. As quliche as it is God will not give you more than you can handle and you can do this. I am sending you love and hugs and support via email. We love you guys!! Happy 23 week birthday Rudy! We love you! Go Rudy Go!
You all are such an inspiration to me! I pray for all of you–that God will bless this journey you are on.
My new friend Trish,
I’m praying for your strength. God knew all about Rudy as he was being formed inside you! You are a testiment to all who meet you- God is sovereign in your life. Hugs to you…Cindy
We’re still here, following along, praying for ALL of you. We understand your emotions- this is the toughest road that a family has to walk. But for all of the ups and downs, that little man in the bed is still there, and still as cute as could be. Hopefully, tomorrow will bring some peace and sunshine for you, and some encouraging improvement for Rudy.
I too will pray for Rudy’s quality of life. Trish, you and your family are in my nightly prayers but it is helpful to pray for specific things also. Thank you for giving me this opportunity. Love Sydney
He is so cute. I’m praying for him. You and Rolf do an amazing job of giving attention to all your children when Rudy’s health could consume all your time. Even if I don’t post often, you all are often in my mind and prayers.
As I was reading tonight’s posting, mentioning that when things are quieter, you have time to think – I thought that is actually a good thing. Rudy does the same. I know he is aware of your presence and love. Though he hasn’t (yet) found a voice to say his thoughts, he has them. His path is the path set for him…all for the glory of God.
“Before I formed you in the womb I knew you, And before you were born I consecrated you; I have appointed you a prophet to the nations.” Jeremiah 1:5
Here is the affirmation I hold today: Rudy is filled with the radiant, intelligent life of Spirit. It moves freely through him, harmonizing and restoring him.
Hi Trish,
I know things seem so exhausting and never ending right now. I hope you know how many people would hug you right now, if that were possible. That’s why we’re here. When you get tired, we will do all we can (with words) to carry you to the next place.
In my field, I have worked with many children with medical histories. Currently I am working with a little one who spent three straight years in the hospital. I fell in love with him instantly and he is bright and so capable of learning. He has more scars on his body than one little body should…but he smiles, he plays, he signs, and he does more each day.
Don’t ever give up on your dreams. Your dreams will pour the love and strength into Rudy, that he needs to heal.
Prayers for peace from CT
I am moved by Diana’s word to you,Trish.It really says it all.
I am participating on a prayer team this weekend at a Women’s retreat. I will pass on the exact words that you are praying for, so that we may join with you in might!
Love, Kathleen
Hey Trish…I will be praying for to be able to take thoughts captive that shouldn’t be swirling around in the mind – as hard as that is – I can’t imagine how hard it must be to try not to figure out what the future will hold when you just have no clue. We don’t know a lot about the mind of God, i.e., why He does or allows the things He does, but we can know a lot about His HEART- so full of mercy and LOVE for his precious Rudy, whose angel always sees the face of the Father in heaven (Matthew 18:10).
I’m all over your prayer for Rudy. I like to pray with pictures in my mind and I see you all as a family at home, outside, NOT in a hospital.
Blessings,
Colleen