On Friday Henryk turned three weeks old!
Our last post shared that we came home with Henryk on hospice care. We have been home now with Henryk for 6 days. Amazingly enough, Henryk has not vomited once since leaving the hospital. We stopped monitoring his feedings in detail and are just feeding on demand. He has even transitioned to nursing exclusively with no bottles. This is quite something and we are very happy about it.
We had an appointment with our pediatrician this week to get more of an idea of what the future could look like. Now that the vomiting has stopped, things could go a few different ways. It is impossible to tell, but he said that he believes we may have a number of months with Henryk. He does not believe Henryk’s brain will hold up for more than a year, but he does not believe it will fall apart in a week either. Although Henryk is at risk for a spontaneous life-ending event, we will more likely be faced with gradual changes in his condition including eating, breathing, and general failure to thrive. It is also likely that Henryk’s head will continue to grow, even becoming quite large.
So we move forward with tension. Oh lord, how do we do this? How do we live this way? We are caught. Live like you were dying… How do you live like your child is dying? It feels like a very significant and at the same time like a very silly phrase. Life has never felt so deep and real. It has also never felt so fuzzy and unbelievable. How do we try not to waste any moment when every moment is saturated with sadness? How do we do trivial things like go to the grocery store and act normally when our baby’s brain is degenerating? How do we spend time with the people who will help us most when we can’t form words? How do we have a conversation about the weather when the sky is falling?
How did our hearts not stop when our sons brain started falling apart? The very act of continuing to breath is an effort so colossal it produces continual exhaustion. We feel as though life is ruined. But even if that were true, a ruined life does not equal a life without purpose. A life intended by God.
Every moment of every day will be altered. Would that we could die in his place and end this. Such is this love in our hearts for him. But that is not our option. But that is what Jesus did on the cross for all of us. That is the kind of love he had for us. And indeed he still does, although we do not understand our situation. Jesus died on the cross so that we have hope. A greater hope, a greater love, a greater strength, a greater comfort than a perfect brain. In this world we will have trouble, but take heart, he has overcome the world.
Our Henryk is a sweet wonder of the Lord and we are overwhelmed with thanks when we hold him in our arms.
~Emily~
Psalm 77: 11-15. I will remember the deeds of the LORD; yes, I will remember your wonders of old. I will ponder all your work, and meditate on your mighty deeds. Your way, O God, is holy. What god is great like our God? You are the God who works wonders; you have made known your might among the peoples. You with your arm redeemed your people, the children of Jacob and Joseph.
Lily entertaining Henryk with “Bodo Head”
Lily and Henryk with “Unc”
Lily reading to Henryk
Henryk enjoying the beautiful weather this past week
henryk 
Oh my sweet sister. I love you. Although, I wish I could be there to see you and Michael, Lily and Henryk and be of some comfort and encouragement, I know that my prayers for you to the Only One who can be your comfort and encouragement is the best way I can love you. My heart aches for your pain and yet rejoices that Henryk is bringing us closer to our Lord.
We as a family are memorizing Psalm 73:25-28 –>
Whom have I in heaven by You? And besides You, I desire nothing on earth. My flesh and my heart may fail, But God is the strength of my heart and my portion forever. For, behold, those who are far from You will perish; You have destroyed all those who are unfaithful to You. But as for me, the nearness of God is my good; I have made the Lord GOD my refuge, that I may tell of all Your works.
With so much love for you all!
My Dear Thiels, I am continuing to pray for Henryk, and for all of you, that God the Father would exercise his power on your behalf, that the Spirit of God would minister to you deeply, that Jesus Christ would be close and dear to you, and you would continually trust in him. May the Lord surprise you with things exceeding all that you could ask or think, and may Jesus Christ be glorified.
In Christ’s love,
Craig Combs (friend of Charles & Cary, friend of Steve & LInda)
Dear Michael, Emily and Lily,
Just want to let you know you are in our thoughts daily and we continue to pray for Henryk and the whole family…may you find strenghth within yourself to get through this…thanks for the blog and sharing all the beautiful pictures…Henryk is so beautiful….God Bless You…Tom & Sue Van De Kreeke (friends of Bette & Otto)
Oh Michael and Emily……
I am in awe on how well you can write about what is happening and how you are feeling. The updates are written so well, your faith is so apparent that when I try to respond…..anything I write feels inadequate, but I need you to know you are truly in my thoughts and prayers.
I am praying for a miracle, but if that isn’t in God’s master plan…..I pray God gives you peace of mind, comfort in friends and family, and strength in each other to keep going forward.
To quote Father Tim ( a character in Jan Karon’s Mitford series ), I pray the prayer that never fails….Thy Will be Done.
Much Love,
Pam Raquet
Dear Mike and Emily and family, I had been so sad to hear of little angel Henryk’s condition when we first heard about it But now my heart marvels at the strength you both have demonstrated in the face of such formidable odds. Truly that tiself is a miracle that you are able to handle this great insurmountable task so bravely. Each and every day I pray for you at mass and offer everything with the prayer “Thy will be done” You have been given and angel to hold and love for how long, only God knows. Know that we feel your pain and you love for this beautiful baby boy. God bless you.
Ruth and Sena Narendran
What a post! Emily, you are a remarkable communicator. Oh the paradoxes of this amazing journey! Almost too much to bear…and yet you are, and you are inviting us in as well. I can’t thank you enough. I pray for you many, many times a day. Thank you for the sweet pictures. I hope Henryk doesn’t have bad dreams from his close encounter with Mr. PotatoHead! Ha! Lily is a sweet big sister.
Love you all,
Julie
Michael, Emily, Lily, and Henryk-
My name is Becky and I work with your dad, father-in-law, Otto in cardiac rehab. He shared with me today about the journey you have had with your little angel Henryk. There is a saying that sticks in my mind and I want to share this with you “Some people only dream of angels…we held one in our arms”. It makes me think of you while you are holding little Henryk. Please know that even though I do not know you, you are in my thoughts and prayers. I saw the sadness in your dad’s eyes today. The love for Henryk shines through him. Take care and God Bless, Becky Blake- Sheboygan, WI
Emily and Michael:
Sometimes there are just no words to adequately express one’s feelings, and for me this is one of those times. As a mother I cannot imagine what your world has been like for the past several months, especially the last 3 1/2 weeks. However, I have to tell you I have been so impressed with the strength, love and true faith you both express so openly in all of your posts to Henrky’s special book. You are two incredibly remarkable and special people. Please know that all of you are in our prayers day and night. Vicki Price – Kohler, WI
Mike and Emily, I have been praying for you and Henryk daily and will continue to do so. This is the day that the Lord has made. In one sense we know exactly what He doing – building His kingdom by saving sinners and sanctifying His people. May He be glorified in your family and may He uphold you in these fiery trials and rivers of sorrow. Ellen Buehler (friend of Carey Thiel in VT)
You do a beautiful job communicating what you’re living, Emily. These are all questions I’ve wondered to myself when I think of you. Thanks for sharing some of this journey with those of us who are praying and carrying you to the Cross.
I am a sister of Charles and Carey in Texas. Thank you for pouring your heart into these words and sharing your grief with us. May you know that many others are lifting your family in prayer as you bear this unfathomable burden. My prayer is that as you hold your little son in your arms, you can treasure the beauty of the moment, the miracle that he is, and the promise that our God will indeed make all things new.