Lately multiple people have asked us why we chose the name Henryk.  I learned about a man named Henryk Goldszmit from a book I read while I was pregnant.  During World War II he was a pediatrician, author, and more significantly, ran an orphanage of Jewish children in Warsaw.

Warsaw was the first place the Germans established a ghetto during the war.  When the ghetto was established all of the children from the orphanage were sent there.  Henryk was not required to go to the ghetto but he chose to go anyway to take care of the children in horribly unsanitary and famine-ridden conditions.  He found ways to not only care for them but respect them in their childhood.

Then, when the ghetto was liquidated and the children were sent to Treblinka extermination camp, Henryk was told that he did not have to go with them, again he was exempt.  But Henryk chose to go anyway saying, “You do not leave a sick child in the night and you do not leave children at a time like this.”  So Henryk had the children gather their belongings and he marched with them, escorted by the SS, through the streets of the ghetto to the train cars that would take them away.  There is a picture of him holding a child and leading them in songs to keep them from panicking and being scared.  He died with them.

We picked this name for Henryk on the day we found out about the first cyst in his brain, when I was 24 weeks pregnant. We picked this name because we want to show our baby the kind of love that this man showed those children. We want to be for our Henryk what he was for his orphans.

Indeed it feels like God is calling us to this kind of a relationship with Henryk. Along with loving Henryk comes pain and sadness. This warm, snuffly, grunting, helpless boy is just burrowing further and further into our hearts. I sit and nurse him and am afraid of what this love will do to me. It already hurts so much. My soul aches and my heart groans with the reality of how dear he is to me, how much he feels like a part of myself, and how he will be taken away.

We have death all around us.  However, it is not all that we have around us.  We have grace all around us too.  Like author Paul Tripp says, God, in grace, is using death to lead us to where life can be found.  There would be no way for us to endure this impending physical death without the promise of spiritual life in Christ.  If this life was ultimate, we would be in despair.  But because we have eternal life in Christ and his resurrection we believe that the time Henryk is here is a piece of the thread of his life that will go on into eternity.  We are so blessed to have this time with him.

By way of more of an update, we are continuing to move forward, learning to function in this new way of life.  Henryk threw up one time this week, which was very sad and sobering because we did not know if it was the beginning of a decline in his condition or not.  He seems to be fine now.  We are also still working on figuring out his seizure medicine as we have observed some abnormal twitching.  It is proving tricky to keep the amount of medicine in his body high enough to be at a “therapeutic level.”  Emotionally we seem to go day by day.  Some days are very heavy while others are full of more normal joys.



Henryk snoozing through his “tummy time”


Lily loves her brother and always needs to know where he is. We are still working with her on the whole “gentle” principle. She is always trying to pick Henryk up and move him!


A gift from God is this awesome view of Henryk that we get when we hold him.


A picture from today (Labor Day) at a friend’s house where a water fight broke out with the kids.


Henryk on Michael’s lap. Michael enjoys his Henryk time in the late evenings when Henryk can’t sleep and the 2am-6am window. Henryk has troubles falling back asleep after the 2am feeding until he ends up sleeping on Michael’s chest at which point Henryk is fast asleep. Michael is loving this sweet snuggle time with Henryk. As Michael has said lately: “My dad would take time in the middle of the night to scratch my back and help me fall back asleep; I’m glad I am getting a chance to do this for my son.”