Dear friends and family,

We are sitting on a fence, enjoying time with our son while also wondering if every breath is his last.  Our sweet baby Tage is still with us.  He is a fighter, that little one.  We did not expect him to be here at the end of this long week.

Meanwhile, we continue to live the day-to-day of this journey.

It has been a long, difficult, wonderful week — simultaneously one of the best and worst weeks of our lives.  We have been wrapped in your prayers, messages, texts, and gifts.  Many of us have felt the warm embrace of friends and family via social media.  Thank you for that.  We are cocooned together in this house, and yet we feel love coming to us from around the nation and the world.  Thank you.

Baby Tage spends his days up in his nursery in the comfy chair by the window.  We take turns holding him for long stretches of time so that we move him around as little as possible.  Occasionally, he will open his sweet eyes and look around, and when he does, everyone in the room halts their conversations, stands up and leans toward him to get a glimpse of those beautiful, blue eyes that we love so much.  And we usually all cry.  It’s one of the best parts of my day.

The worst part of my day is when he opens them out of pain or anxiety.  It happens suddenly.  He will open his eyes and immediately have a look of fear as his eyes dart around the room, his arms flail, and his back arches as he squirms, unable to cry out and unable to run away from whatever has come up him in that moment.  My heart immediately starts to race as Josh runs to get more Valium.  We all hold our breath until he returns with the g-tube, and I speak in a soft voice to Tage to try to settle him.

Meanwhile, my heart breaks.

I beg God to come and settle him quickly.  I wish I could take the pain from him and remove whatever anxious thoughts must be running through his sweet little mind in those moments.  Does he feel out of control?  Does he feel pain?  Does he see images in his mind that cause fear?  What makes those episodes come on so strong and so sudden?  Those are the worst parts of my day.

But there are many sweet parts in our days, too.  The house is full of people we love.  Josh’s mom and sisters are here most of the time.  My sisters and brothers in law have traveled here to stay for an extended time.  If their bosses are reading this, I want you to know that I am forever indebted to you.  Their presence here, without pressure from the office back home, is the greatest gift you could give us right now.  Thank you.  We sit together and sip coffee and eat yummy food that we didn’t have to cook; we read books to Tage (we’re trying to read him all of his books); we tell him the stories that we want him to know about our lives, and we have had conversations with each other that I will never forget.  This is meaningful time.

Friends stop by and wash dishes, run the vacuum, de-clutter the counters.  Of course all of this can wait, but having it done helps my shoulders to go down just a little bit.  So that’s important.

Meanwhile, we get to hold our son and look at his perfect face.

We cry as we think about a future without him.  We kiss his pouted lips and wipe his face with a warm washcloth and put moisturizer on him.  We just sit with him.  For hours.

There is lots of time to just sit and be.  I’m thankful for that.  There is no need to do anything or go anywhere.  Being here is perfect.  Holding Tage is perfect.  This is priceless time, and we are enjoying every moment.

Josh and I are already dreading the day that family goes home and our house is quiet again.  Everyone grieves differently, and I know some people would grieve completely opposite of our full, busy, bustling house.  But Josh and I continue to say that we enjoy stealing away upstairs, just the two of us and Tage, for a few moments while the humming of love and laughter below in the living room reminds us we don’t walk this journey alone.  We have needed to take naps most days, and we like knowing that Tage is getting plenty of love while we sleep.

Most powerful to me has been the nights.  There are usually anywhere from 10-15 people sleeping at our house (all family), taking turns holding Tage throughout the night so Josh and I can get some sleep, too.  We pile in his room for a while in the evenings together, and as people get sleepy, they find a cozy corner all around the house and curl up with a blanket to sleep until it’s their turn to hold Tage.  I know this won’t last forever.  I know they will all go home eventually.

Meanwhile, we like having our people close to us.

Last night, our sweet chocolate lab, Marty, had two seizures.  We aren’t sure what caused them, but as we tried to gather him to us as he rolled around on the floor and crashed into the walls, my mind begged, “Please Lord, don’t take Marty.  This is really unnecessary right now.  I think we’ve got enough on our plate.”  Luckily, Marty settled eventually, and the look of fear left his eyes.  He pretty much got the royal treatment the rest of the night though.

I think that was the last straw for a few of us here though, and many more tears were shed.  We just can’t take one more hit right now, Lord.  You’ve got to prevent things like that right now!

But just as I believe that there is a God who IS Love, who gives us all the beauty, the peace, the joy, the laughter, I believe there are opposite forces, too.  Ephesians 6:13 reminds us that “our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.”  They want us to crumble right now.  They want us to throw in the towel and turn our back on God.  But somehow in the mysterious workings of the Lord, these trials continue to draw us closer to Him.  He is near to the brokenhearted it says in Psalms 34:18.  Our human minds can never understand His ways which are higher than ours, but I know it to be true.  His arms are wrapped around us as we cry, and we are not afraid.  We trust you, Lord.  Nothing that happens is going to change that.

Okay, but really, no more seizures for Marty right now, okay?

We continue to pray for a miracle for Tage, too.  I remind God daily that so many people are watching Tage right now, and if He wanted to do a miracle, we would all know that it was Him.  But again, He sees the whole tapestry.  So, we keep praying boldly and trusting.

Tage’s breathing and heart rate continue to slow.  There is a constant gurgle and raspiness with each breath. The hospice nurse doesn’t think he’ll make it through Monday.

I don’t know what Your plans are Lord, but as Tage’s mommy, I beg you to comfort your son in these next few days.  Take away his pain and alleviate his suffering.  Even now, Lord, would you minister to Tage in ways that we can’t see?  Would you allow him to sense that You are near?  Should you take him Home to be with You, I trust that You will greet him the moment he takes his last breath, and you’ll usher him into a paradise we cannot even imagine in our wildest dreams.

And so we continue to wait, Lord.  We wait to see what You are going to do with Tage and through Tage and for Tage.  We know his life matters so much to You.

Meanwhile, continue to give us faith and peace and hope.  As You’ve already done.

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