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.
~Emily~
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.
Jen said:
Emily and Michael,
Thank you for giving us a glimpse into your beautiful lives filled with God’s grace and love. Your trust in our Lord continues to encourage us. Henryk is so beautiful and so adored. Love you guys.
Praying,
Jen and Josh
Steve Houser said:
We continue to pray for you, for Henryk and for Lily often. Thank you for your blog that keep us updated. His sweet face is too adorable to ever miss or be overlooked!! He is a beautiful baby boy.
Diane and Bill Mikolyzk said:
Emily and Mike,
Your love is so evident, your writing and your faith so beautiful. Thank you for sharing your thoughts, your heartbreak, your joy, your souls and your precious Henryk with all of us. He is an adorable baby, and you will forever treasure the moments and memories you are making right now. Know that you are always in our prayers. Godspeed as you all continue on this journey….
Kristy De Blaey said:
Amen, Diane and Bill!
Bryan Pickering said:
You guys are pointing me to Jesus in the midst of your pain and joy. What a path God has taken you down to display His glory in and through you all. “Wonderful are your works; my soul knows it very well.” I want to sing for joy and weep my eyes out. Fear not, dear Thiels, we see his beautiful face and piercing eyes; we see them and we worship the One who has fearfully and wonderfully made little Henryk. We love you all.
Joe Herzberg said:
Michael and Emily,
I’m so thankful for your blog. Thank you for sharing your hearts with us. Thank you for sharing Henryk with us. We think about you guys all the time. And we’ll be praying for you all the time too. Wish we could come visit you!
Ann said:
We were connect to Henryk’s site through the site Works of God… just a bystander who knows a little of God’s blessings in hard circumstances (Parents of a 9 yr old w/special needs who’s 1 yr. old developmentally). Just wanted to say that your stewardship of His story in you is a blessing in my life. We’re commited Christians too – we’ll share hugs and stories in Heaven. Praying for God to show you some of Himself today in a very tangible way.
Raquel Jahnke said:
Emily, your words are such a testament of the immense love you have for your little boy. He is beautiful in every way. We admire your strength and strong Faith you have kept throughout this. We are thinking and praying for you guys. Thank you for sharing your hearts with us as well as the beautiful pictures of your family. Ryan and Raquel.
caryn said:
It was so good meeting you this morning in Bible Study. Thank you for sharing your heart. Your transparency is a gift to us all & helps us to know how to pray for you best.
abbrogle said:
I definitely agree with Caryn…so glad the Lord put you in our group for the study. Your son Henryk is so incredibly precious…so handsome. Feeling with you…
Andie said:
Emily- you are embodying the heart of wisdom that is gained by numbering your days (moments) from psalm 90. Thank you for sharing
Dianne Novakq said:
Emily and Michael –
You are doing God’s work in sharing so much through your journey with Henryk. I marvel at your clear vision of God despite the difficulties – and I find it so helpful in my life to see your wonderful example on dealing with sorrow. I keep you in my prayers, knowing that God is answering them each and every day.
alisonrigney said:
My in-laws (Joe and Jenn Rigney) told me of your family’s story and I am hooked on your blog. Your honesty of emotions, boldness of faith, and trust in God inspire me. We’re praying for your family, for you to enjoy each moment you have with Henryk, to build memories that will last your life time, and to find peace in the unknown. Love from Texas.