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!