Henryk’s baby dedication date set

Our church, Bethlehem Baptist Church, has the next round of baby dedications set for the weekend of October 13/14.  We plan to have Henryk dedicated at the Sunday Night Service, October 14 at 5:00pm.  More details are to come, but we also want to have an open house time at the church sometime that afternoon prior to the church service.

How’s Henryk?  He’s wonderful.  We love him.  He turned 8 weeks yesterday (Friday).


Oh Henryk…

I’m sitting at the kitchen table staring at Henryk laying on his boppy pillow sleeping.  I cannot say what I am thinking.  I will probably feel like this for a long time…not really able to put a finger on the thoughts rolling around in my mind.  So many snippets of conclusions not yet made but maybe with formation on the horizon?  And then there is my heart.  It feels like it is always swelling just to the brink of overflowing.  Swelling with thankfulness, love, desire, sadness.  The emotions are so real that they blend together.

Henryk’s head has grown markedly this week.  It is from the excess fluid in his brain.  It is a completely expected outcome and does not bother him at all.  He exhibits no signs of discomfort or change in condition.  It is hard on me though.  My uncle, a neonatologist, very helpfully said that he has never known a child’s head to become so large that the parents cannot significantly bond with them.  True.  I feel no differently about Henryk.  However, our neurosurgeon and pediatrician both said that the increase in head size can be very distressing to parents.  Also true.  I am distressed.

It makes me sad to see it happening and know it will continue. I am afraid that other people will look at him and see his head rather than his totally beautiful face and piercing eyes.  It has thrown me into a tail spin of denial. I just cannot believe this is happening. I sink with feeling like surely this cannot be. It just cannot be this bad. There must be something we are missing or something we could do. I search and re-search the Internet looking for answers but there is hardly any information out there on this condition. It simply says it is a very rare disease with a uniformly bleak prognosis. Done. I can’t fix it.  That is just the way it will be and I need to learn how to grieve.

I’m seeing that over the years there will be many more things to grieve and many will be unexpected I am sure.  So then, how do we do it?  How do we grieve these things, small and big, over and over?  How do I not cry every moment?  To be honest, I am not crying every moment now and frequently it feels strange not to be crying.  It isn’t because I don’t feel like it, but it is because the love is so great that the need of the hour requires me to do something else…to play silliness by swimming across the living room carpet with Lily, to change a diaper, to give a bath, to give Henryk medicine, to clean and de-clutter the house, to talk to friends, to nurse, to hug.  This little boy is too sweet and snuggly for me to get lost in the tears.  Giving in to the crying would ruin a beautifully normal moment that is incredibly important to my family’s life.  To do the lighthearted things suddenly takes on a sobering importance.  This is probably the importance they should have had all along and didn’t.

In the past few weeks there have been times of significant inability to function past the tears.  I know that the future holds many more days like this.  Sometimes you cannot pull yourself together.  Sometimes all there is to do is cry.  We have to feel our feelings, we need to face the sadness head on.  But sometimes, the tears need to stay in the heart in order to do what we have to do, to be able to make the most of where we are at.

I am sad and in love at the same time.  I don’t really think that’s an uncommon place for people to be.  So what I have to do right now is pray for and remember evidence of God’s presence in our lives. To see Gods work in this situation, to see His orchestration, His care.  These circumstances have not come upon us in random fashion.  God has put us here because He cares for us and He is caring for us in it.  The overall picture and the individual brush strokes are God’s work and are done in love.  I can be thankful that when God looks at Henryk, just like when I do, He will never miss his piercing eyes.

Psalm 139:1-18 details God’s total knowledge of us, His complete presence with us, and His intentional work in creating us.


1 O LORD, you have searched me and known me!
2 You know when I sit down and when I rise up; you discern my thoughts from afar.
3 You search out my path and my lying down and are acquainted with all my ways.
4 Even before a word is on my tongue, behold, O LORD, you know it altogether.
5 You hem me in, behind and before, and lay your hand upon me.
6 Such knowledge is too wonderful for me; it is high; I cannot attain it.
7 Where shall I go from your Spirit? Or where shall I flee from your presence?
8 If I ascend to heaven, you are there! If I make my bed in Sheol, you are there!
9 If I take the wings of the morning and dwell in the uttermost parts of the sea,
10 even there your hand shall lead me, and your right hand shall hold me.
11 If I say, “Surely the darkness shall cover me, and the light about me be night,”
12 even the darkness is not dark to you; the night is bright as the day, for darkness is as light with you.
13 For you formed my inward parts; you knitted me together in my mother’s womb.
14 I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.
15 My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.
17 How precious to me are your thoughts, O God! How vast is the sum of them!
18 If I would count them, they are more than the sand. I awake, and I am still with you.

Henryk enjoying his new blanket; a gift from good friends of ours.

Family lunch!

Why The Name Henryk

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.”