Jesus Knows
I know one thing, there is no way to prepare for losing a child. There is no “self-talk” that makes the pain less sharp. I thought I would start to prepare myself but the grief never lessens, no matter how I try to prepare.
And so I’ve given up preparing. We are leaving all (each one of us) in the hands of Jesus. He knows how to carry confused and sad kids, he knows how to carry a mom and dad that feel their own flesh and blood being taken from their hands. He knows how to give breath when it feels you will never breathe again. He knows how to comfort in the dark recesses of providence.
He’s felt the ripping of death. He enters into our pain. He will gather Calvin to his own arms when ours can no longer reach. The reality of the resurrection sweetens all this sadness. He has conquered and because of our mighty Savior we can rejoice even in the darkness.
So many of you have prayed for us and that God would guide our decisions. Yesterday we met the palliative care doctor, Dr. Mulder. Within minutes we knew this was right for Calvin. Our talk was less about medical specifics and more about the hope of the resurrection, the value of Calvin and the joy and hope we have in Christ. What a gift from our heavenly Father to give us one of his own to walk us through these days. We are humbled at God’s provision. Even logistically God has provided, Dr. Mulder’s office is about one mile from our home.
We are hoping to go home today or tomorrow. I’m scared about the next days, weeks, months. There is a possibility that Calvin will do well and rebound. We will all be rejoicing! Palliative care for Calvin will mean house calls from the doctor, meds delivered at home and every effort made for Calvin’s comfort and well-being. It is a bridge to hospice. We plan to use hospice for the last days Calvin has. In the meantime we are hoping for many more days with him. And yes, we are still planning to bring him camping this summer (we did Make-A-Wish for a camper!) if the Lord wills.
We are all rejoicing (and crying…it’s so crazy emotionally) that we will have him with us again. We want him home. His beauty and preciousness take our breath away. Looking into his beautiful eyes makes me see the beauty and goodness of our Creator, our Protector. What a good gift He’s given us.
Please pray for strength for our family. Pray that Jesus will be near in all of the uncertainty.
One of the best tools I have for getting through hard times is saturating my mind and heart with the truth of God’s word. This week, in addition to reading the Word, it meant tuning into the Gospel Coalition Conference and praising with the Getty’s. Calvin was enjoying it too. I tweeted a pic of it and the Getty’s tweeted back, fun!
Therapy dogs visited Calvin again. He giggled when the dog licked his cheek 
Anybody have a dog that can visit us at home? He seems to get so much enjoyment from them. Noah and Evie loved the dogs too.
Both of these furry friends are gifts from the hospital–the Child Life program here is fantastic. Calvin has been loved-on well.
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Hoping for Home
Really, if I could do a cartwheel without breaking my leg I would! Calvin has shown significant progress today. After a long week of not making much progress off the vent he decided to step up his performance. Yesterday he was able to be off for most of the day. Today he’s having the same progress. I’m starting to think he will be making it home!!
We couldn’t be more surprised or happier! Obviously Calvin still has serious problems remaining, most significantly weakened lungs and seizures. We are meeting with the palliative care doctor tomorrow as we try to discern the best way to care for Calvin. Thanks to all of you faithfully praying for this little guy.
We’ve been covered in prayer and have seen some results in a very immediate way: excellent caregivers, nurses who’ll take time to give input into Calvin’s situation, nurses who empathize with the decisions and speak into it in a personable and professional way, honesty and lack of pressure from those in charge. I could go on. We’re surrounded by a fantastic team up here on 8, this is a direct gift from God.
We’re so glad to have this temporary gift of strength for Calv. He will run into trouble again, probably sooner than later, which is why we are meeting with the palliative care doctor. Pray for wisdom for our family. In the meantime here’s some kiddo cuteness for your eyes to feast upon Perhaps I’m a little biased though…
Our little girly turned five on Sunday! She couldn’t have been happier with her new camping gear and bike helmet.
Taking a video break to quiet the little squirrely ones. I think Calvin is watching too.
Proudly wearing her new dress from Grandma. What a ray of delight this one is!
Calvin checking in on Darryl’s day:
I’m not sure who looks happier here:
Stillness
Grief.
Preciousness.
Breathtaking beauty.
Longing.
That describes our week.
Jesus, will you come and be with us in the valley?
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Gift of the Gospel
Recently Gloria Furman recommended A Gospel Primer over at Domestic Kindgom. The book is all about why (and how) to preach the gospel to ourselves daily; the truth of it all is saturating my soul these days. Seems like a no-brainer, right?
I’ve grown up with a somewhat vigorous theological training between school, catechism, countless sermons and books my parents amply supplied. It wasn’t until I was converted in my late teens that the the renewing of my mind actually began and all the old files stored away began to flip open and become alive. And yet today it still seems I am just beginning to understand the awesome totality of the gospel and how it transforms me by putting Jesus and his work in focus.
I’m finding my thinking is often more shaped by culture, assumptions and my own rationale than it is by the gospel. Check this out:
The gospel is so foolish (according to my natural wisdom), so scandalous (according to my conscience), and so incredible (according to my timid heart), that it is a daily battle to believe the full scope of it as I should. -A Gospel Primer by Milton Vincent.
The gospel is contrary to everything this sin-worn world experiences. That’s why I can’t rely singularly on my heart, intellect, culture or popular theory–the Word needs to be my source, my compass. As society we muddle around with sticks and dirty stones of philosophy and human theory and regard our insights as “academic” and “lofty” while the Bible remains a snubbed book. We are missing the power of God with a closed Bible! And I need constant rigorous diving into the Word to wake my heart up and stir my mind. I can ponder ideas or read great books but it is the power of the Word that has the ability to transform my mind and thereby change my life.
Each day I need to remind myself daily of where I came from (sin, death!), how I was redeemed (by Jesus Christ!) and how to live this reality each day. I need to drink in fresh supplies of the gospel daily–it needs to be the oxygen I breathe in, it needs to expel the toxicity(sin!) from my heart, it needs to saturate and inform my mind. I want to be magnetized to the gospel. I’m so quick have my life revolve around the gospel in theory but in actual practice it gets really skewed. We are so quick to have a high opinion of our own thinking and rely so little the Word. I stunt my growth so often.
God did not give us His gospel just so we could embrace it and be converted. Actually, He offers it to us every day as a gift that keeps on giving to us everything we need for life and godliness. We extract the benefits by being absorbed in the gospel, speaking it to ourselves when necessary, and by daring to reckon it true in all we do. ~Milton Vincent
I’m thirsty for this gift. I want to meditate on the gospel in a more meaningful way and I’m so grateful for the help of this little book.
*In other news…our long ICU stay continues. Calvin is treading water. Seizures are under control but his breathing is really struggling. He seems to be so weak. The days are long and we find sadness seeping in often. We’ve received love from some of you by meals, cards, flowers, a note…thank you for your care for us. It feels as if our hospital stay will never be over (we’ve been home 3 weeks of 2013)! We really don’t know what the next few days/weeks hold for Calvin. Please keep us in your prayers. Thank you friends.*
Bringing a little cheer to the ICU!
Little Chick
It’s Sunday night and I want to take my little chick home. I miss his wide eyes listening to mommy and daddy talk in the evening darkness. I miss checking for his fuzzy tuft of hair and rubbing his cheek to get a grin. I miss waking up and looking over to find him wide-eyed, looking for the light from the window. I would say softly, “Good-morning Calvi” and his whole body would light up–from the tensing of his legs to the widened eyes and full-face smile.
The days of school and health seem to be so far gone. No matter how much I tell myself to prepare to let him go, it seems an impossible task to do. I’m so attached to this boy; his body has been closer to me physically than any other child. If he wants to play we pick up the rattle and play it for him. He lives life through us, by our songs and cheers and little games. The weight of his care is overwhelming but the thought of losing him makes all of us stagger. Never have we known such love, such sweetness.
Evie bumped her head as she climbed the stairs, over-tired and cranky. Whenever sadness or hurt enters her life, she runs to Calvin. She buries her head between his neck and shoulders and sobs her tears there. He opens his mouth to kiss her and beams at her. It is the surest form of earthly comfort any of us have found. He only knows how to give love, no matter how rotten you feel or how huge your failures are, he doesn’t care. He loves you. When Evie realized how much she missed him, his warm body and unconditional love, the bitter tears came in weeping buckets.
I think Evie’s reaction is how we all feel. Tremendous joy with his life and tremendous pain with his struggles. Calvin’s been in the hospital for 1 week now (of this stay) and is still in ICU. His seizures have responded to a particular medication but he doesn’t seem the same to us. This could be a result of the meds or an effect of the prolonged seizures (seizures do damage to the brain). We are immensely grateful for his awareness of us and his ability to smile. If that was lost I do think a good part of me would wilt away.
He is weak. He is tired. The plan for this week is to wean him off the vent (please pray that will be successful) and observe seizure activity (or lack thereof). My plan is to nestle my head into his warm poof of hair, rub his back and play games (he loves that!!) with the wee one. We also have a very special little girl turning 5 this week! Darryl and I are making plans to have a special day for Evie.
A book that has been a real encouragement for me is Hope by Nancy Guthrie. It arrived as a surprise gift from a friend and I’ve been so encouraged by it. I can’t recommend it highly enough; it is not sentimental but rather a thoughtful encouragement based on God’s Word and who He is. You can check it out here.
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Update
Calvin has taken a turn for the better! One of the meds is being tapered off and the result is more awareness. During my time with him today there were quite a few smiles that seemed intentional. His eyes are still showing signs of seizures but there are also times where I see good normal eye movement. Neuro is pleased with where he is at and thinks he is responding quite well to the treatments. He is still having seizures but it is better than before.
We are SO thankful for the outpouring of prayer. This week we began to consider funeral arrangements knowing it could be a very near possibility. Today I’ve put them away, it looks like they will not be needed yet. Praise God.
For those of you faithfully calling and checking in…I’ll get back with you as soon as I can. I’ve turned off my phone as I feel unusually exhausted, too tired to even talk. I think 2013 is catching up to me…I can hardly seem to put one foot in front of the other the last two days. We are focusing only on taking care of all the kids and trying to catch up on rest ourselves. We still have quite a run in front of us in the ICU. Thanks for understanding and know that we are so grateful for each one of you–for your faithful friendship, kindness and prayer.
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