It has been over three weeks since we last gave an update. Little Henryk continues to get more sick, when we thought more sick was not possible. We now look back at pictures where we initially thought he looked so sick and think he looked pretty good compared to now. His sweet little body is mostly protruding bones. His temperature is 95 degrees, pulse is 80, and he breathes 12 times a minute.
Although his form continues to distort he is so clearly and wonderfully the same boy. We continue to adore his content temperament and cute cry as he registers his complaints. We gaze on each of his parts and attribute them to one of us…he has Michael’s long fingers, Emily’s ears, Michael’s nose and mouth, Emily’s eyelashes, Michael’s eye color, Emily’s eye shape. And the whole package of those parts still looks so like his sister.
There are still many questions. We continue to be in a state of confusion about most aspects of his life. Now is no different. There have been scores of times when we have thought he breathed his last breath. Even our hospice nurse has told us that she on multiple accounts left our house thinking there would be no need to come back. It is strange to wait for death to come when it is an unwanted visitor. It really is the only relief to be offered to Henryk though, and although it is a wretched relief for us, there will be no wretchedness in it for him.
We have had a lovely holiday season. We had special time with close friends and both sets of our parents came to us to celebrate Christmas. They have made all of our holidays this year possible. We had a delightful New Year just the four of us.
Lily getting ready to go outside and help Dad shovel
Mom and Dad helping Lily on the cash register
Bette (aka “Grammy”, Michael’s Mom) and Emily
Lindsey and Lily
Lily and B (Emily’s Dad)
Megan and David Mathis holding Henryk with his Christmas gift ornament (Baby’s First Christmas)
Lily and Annie working on the Gingerbread House
Coleman Mathis really excited about his “Cars” sticker book
Carson (left) and David (right) focusing on their own “Cars” sticker book
Henryk – Dec 30, 2012
Dec 28, 2012 – Lily was playing with Henryk and left him one of her Thomas Trains and some stickers
henryk 
Our thoughts and prayers to you courageous and inspirational parents. God love all of you. The Farrows (Acuity)
Thank you for your updates: they are a gift to all of us who pray…while you do the hard work of LOVE. Thanks, too, for all the photos. We love you all. Julie
Henryk’s face is so sweet. It’s hard to shake the tears. I hope God is gracious and sweet to you.
Thank you for your faith and trust in God as you walk through the hardest season of your lives. We’ve never met before, but my wife and I are praying for you, your family and most of all little Henryk.
The photos are beautiful…you are so strong, and Henryk is so inspiring…sending love and prayers…
I found your blog through a mutual friend. Your faith in Our Lord is beyond words. My family will be praying for yours.
Little Henryk has the greatest mommy and daddy and the greatest sister and the greatest grandmas and grandpas….your love for little Henryk is so strong….I don’t know where you continue to get the strenghth to carry on but you do and you will….you have shown us this from day one, when you found out Henryk’s condition and you haven’t faltered…thanks for the update and sharing the pictures that show us what a loving environment Littel Henryk is in
….my prayers are that God does what is best…continue to take care of your little Henryk but also take care of yourself…..God Bless You!!!
Your family has been on my mind through the holidays and I’ve been praying for strength for each of you and that your precious girl would remember her little brother and the “gentler times” that you’ve had as a family of four. God bless you as He is close to you
Psalm 34:18 The Lord is close to the brokenhearted and saves those who are crushed in spirit.