We thought it might be time for a short update. Henryk has made it clear that his body is declining, seemingly simply due to his condition, not any decision path we did or did not take. He is not eating anymore, by nursing or bottle, he cannot close his eyes anymore, he is quite stiff, and he has regular apnea episodes. Moving him is very hard on him so we have made our post on the couch. The two of us take turns holding him around the clock, with me taking the majority of the day while Michael works, Michael taking evenings, and each of us a few hours at a time at night. We started him on IV pain meds through his PICC line which has been incredible in keeping him comfortable.
It is an honor to care for him. To do everything we can for him is a high calling, and we appreciate the gift of the opportunity to do it to the best of our ability. We have not left the house or slept in bed in days and we do not care. We are soaking up the chance to spend time as a family and it is a blessing.
Much of the time we are able to remember the truth. We are able to remember all of you who have said you are praying for us. It is like a shield of protection is around this house boarding a slowly passing boy. It is sad to behold but even for this there is grace. God does not put you on a path like this and then leave you.
henryk 
Oh guys, this is so hard. It’s hard to know what to pray. Joe and I just prayed that the Lord would take Henryk quickly to his side, where his body and mind will be fully new and fully perfect. May he give you everything your hearts need in these moments. You are always on our minds.
John 14: 1-3 My family’s prayers for you and your families.
i am a person you have never met, but God has placed you in my life and in my thoughts & prayers via my daughter shannon … dear ones, you are loved, thought of and prayed for from elgin, minnesota … little henryk is a gift from God … all our children are … and we are blessed by God’s grace each day that He entrusts us with them … you will NEVER regret the time devoted/dedicated to henryk’s care … he has forever changed your lives and God has never left your side … thank you for bravely sharing your life on this blog … and proclaiming your strength in Jesus. am praying that your prayers are answered, in Jesus name. you are loved beyond measure. erika kelly Proverbs 3:5-6
My heart aches so much for everyone. Right now, I am wrapping my arms around you all and giving you a big hug. You have such beautiful faith in God and I pray you continue to find you’re strength through these unbelievable challenges. I pray Henryk is able to be kept comfortable before the good Lord decides that it is his time.
There are just no words to describe the heartfelt feelings we have for all of you right now. Take care & God Bless you all! Love Steve & Deb
We continue to hold your entire family and your friends in our prayers. Your ability to blog about this experience has been amazing. Hope you find comfort in knowing that your words are making an impact on all those you are reading them. God’s Peace to you all! Dan, Kim, Hannah, and Noelan Jones
Praying for you all, and thinking of you often. Henryk’s life and your sharing of this journey through your blog has changed my life. Truly. I have learned a lot about what it means to have faith in God. Thank you for letting even strangers like me witness this amazing life.
~ Erin, a mother in Virginia
Henryk is a very lucky little boy to have such amazing parents. Your story is an incredible testimony for all of us and a reminder of how fragile our lives really are. Thank you for sharing your story with. I pray continually for all of you and thank God for my blessings. Our love to you and your family. Tom and Peg
Thank you Emily and Michael for sharing your incredible heartfelt journey with the world. Henryk is lucky to have such wonderful parents to care for him in these moments. I pray that the Lord give you and your family strength and courage to face each passing day. Jackie & Ron Franklin
Michael and Emily you are amazing! We continue to pray for you and Henryk!
Love,
Wayne and Mary
We continue to pray for the four of you. Your love for your children is beautiful to behold. Thank you for your updates and allowing us to share your joy and sorrow with you.
Brie and I love you guys.
Bless your remaining time as a family here on earth. So glad that you get to spend this time with him. We are praying for you!
I just found your blog. I am so sorry. You and your family are in our thoughts and prayers.
Praying for you that:
-God would give your sleep deprived, grieving bodies strength to care for Henryk
-If possible there would be even moments of sweet (though bittersweet) joy in his last hours here
-God would give you wisdom to know when to emotionally tightly hold to him and when to pass him to the arms of his Heavenly Father
-That your friends and family would have the wisdom to know when (and what) to call/help/speak to you
-That God would protect and guard your hearts through the grieving process in the years to come
-That you would be able to see the way that Henryk (and your faith) has brought glory to God
Love,
A sister in Christ
There’s a lot of grace in this post and in your home. Praying for you all.
2 Corinthians 12
9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. 10 For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.
Praying for you both.
Blessings to your family during this difficult time. I admire your faith and pray that God continues to hold you up.
It is so hard to know what to say or even what to pray. Though it may seem like a darkness is around you, hold on to the Lord. I am so sorry for your hearts and how they must be hurting. I will continue to pray and I hope that it brings you some measure of comfort, however small that may be.
Emily, I saw a mention of your blog on Sarah’s facebook, and I just wanted to send love and prayers your way. Your family is very lovely. I’m sure you have a huge support system, but if there’s anything at all we can do from far away, please get in touch.
Just read the recent blog…this has been a lesson for all of us following your blog…of your incredible strenghth, love and faith…may the immense blanket of prayer wrap around your family and hold you. I pray that this does not last to much longer and that Henryk will finally be in God’s loving arms. Thanks for sharing your journey and all the lessons you have taught us.God Bless You!
Emily, just wanted to let you know that everyone at MOMS is praying for you and for your family. Your blog is a ministry to us all, and you are an example of how to glorify God even in the midst of unspeakable grief…thank you for that–know that you are loved and thought of often. Praying God’s mercies on all of you in this time.
We are praying for your strength and comfort as you keep watch and say goodbye. Our hearts are heavy as we contemplate this path you are on, but we are so grateful you know the Author of all of our lives, and we know He has you, and Henryk, in His perfect, sovereign care. May you feel it now as you have never felt it before. In Christ, Pete and Kïrsten Christianson (BBC North)
“Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and the sea was no more. And I saw the holy city, new Jerusalem, coming down out of heaven from God, prepared as a bride adorned for her husband. And I heard a loud voice from the throne saying, “Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” (Rev 21.1-4)
Emily and Mike,
I first learned about Henryk yesterday and have not been able to stop thinking about him and the two of you since. I will continue to pray for your family and that you continue to move forward in your strong faith and in teamwork with each other. Through your blog, you can be sure you have inspired many people to turn their lives to Christ and all he can do. Henry has served as one of God’s angels.
Much love,
Kalli Holzwart
Praying for you. I read your blog about Henryk’s journey and it’s heartbreaking. I pray that God will give Henryk and your family strength.
Emily, I attend Bethlehem and I think I met you a few years ago at a Titus 2 event. I read your whole story am so moved by it. It is so incredibly sad. I am so sorry for all that you are experiencing. I am praying that God will sustain you, your husband and your two little ones. Thank you so much for sharing your thoughts, struggles and prayers with us. You are an inspiration.
weeping and praying with/for you.
Praying for you Emily – we prayed at MOMS today. Praying for your last sweet moments with your boy – and for God’s grace and peace.
Thank you for sharing your story. Henryk’s life has touched many more lives than you will ever know. We are praying that God’s peace would wash over you.
Hi, I know you don’t know me, and I am not good with words, but I just want to say that we keep all your family in our thoughts and prayers.
Henryk is so blessed for having such a great family.
The fact that you are bravely sharing your life with words on this blog is amazing, and has made a great impact on all of us because you helped us renew our faith in God.
I truly admire your faith.
Dios los bendiga hoy y todos los días.
praying for your family! this is heartbreaking to hear…and what you said last is so true and comforting! “God does not put you on a path like this and then leave you.” thank you for posting.
Oh the mercy that only God can give, the depth of pain that can be fully known only by One who gave His own Son, the hope that waits but doesn’t see yet… May He draw nearer and nearer.
I found out about your blog from following Jenny Rigney’s blog. I thought your family was (and is!) absolutely beautiful. I knew from reading a little on Jenny’s blog that something was wrong with your beautiful Henryk. I began to read your blog from the very beginning, and I have come to understand his condition as best as one can. I want to let you know that I am so thankful for your blog, and for letting me, a stranger, into your life, and letting me pray for you, and your sweet Henryk; as well as the rest of your family. My thoughts and prayers have been with you since the day I began reading your blog, and I continue to think about you, here and now.
May you find peace in looking into your son’s eyes, and may you find strength and comfort in each other.
You are always in our thoughts and prayers. Sending lots of hugs and kisses to you – Mike, Emily, Lily and little Henryk during this difficult time- XOXOXOXOXOXOXOXOX. Please also know that Great Grandma is also praying and thinking of you daily – the only peace she has in this difficult time is that Great Grandpa Ray will soon be blessed with the joys of another great grandchild to love just like she is able to experience. My heart breaks for you – please don’t hesitate to ask if you need something from a distance. Much Love, Anna Marie