We Made It to Colorado

May 3, 2015

We made it.

I’m not sure how, other than the grace of God, but we made it.

We packed everything my husband could possibly squeeze into our pickup truck and for the sixth year in a row we left for Colorado for the summer. I continued to pack box after box and toy after toy and Kyle somehow made it all fit.

We left right after Lincoln woke.  We put the very last items in the car and we started our seventeen hour journey to our other home in Colorado.

Some people would call it their second home or their summer home. Wouldn’t we sound fancy if I said things like “Powderhorn Cabin: our summer home in Colorado”? But this here was our first home. It’s the first place that Kyle and I ever lived in the same state much less under the same roof.

Five years ago, seven days after our wedding, we loaded up the car and drove here for our first summer at Ute Trail. And yesterday we loaded up our little guy for the first time to take him to this place we love so much.

And somehow, past the hail covered roads and through the fits of crying and around the curves that seemed a little sharp, we rolled in last night just in time to lay in our beds and rest.

We employed much help from the squeaky toys and the ringing toys and the puppets and the chew keys and the stuffed animals. I’m not sure how long I made up songs for Lincoln while sitting in the back seat making the craziest of faces but it worked. We had a number of games of peek-a-boo and I know that at one point there was a theatrical production starring Wubanub Duckie and Sophie the Giraffe that Kyle had to endure.

But we made it.

We are here.

We are home. Again. And it’s summer… and it's almost time for camp.

Look out. Pictures and tales of the mountains are due any minute now.

Once on My List

Sometimes I wonder if you think our lives are somber and relentless.

If you don’t know me, you may in fact think that our life is  only hard.

It’s because the hard times tend to draw me closer to the keyboard than the easy ones. The same way I’m sure I draw closer to the Lord.

But I want to make sure you know that our lives are filled with great joy.

If you want to see it on a regular basis, simply follow me on Instagram. Anyone who does, knows that I will take ten million pictures of Lincoln smiling and post them all in one day. Yes, I know, my baby is the cutest baby you’ve ever seen. I agree.

(I also know that you think your own child is the cutest and you’re just being nice. Or maybe you haven’t had kids yet and you do think my kid is the cutest. But I’m not delusional, I know I will forever think my kids are the best, even if somehow proven otherwise.)

But there are lots of smiles here at the Hess House. There is a whole lot of love here. And honestly, it’s kept me away from writing for a bit.

When Hannah was born I needed to write. My survival was Jesus and writing and hugs from my husband, along with a steady stream of chocolate and friends and worship music. But now writing is my desire. I want to write. I long to write. But there are times when a little guy takes quite a bit of my time and we laugh until he gets the hiccups and I forget all about writing.

And I think that’s just the honest truth about this stage of life.

I spend my days making a little boy laugh and giving him the hiccups. And then soon after, I regret said laughter because of said hiccups because he won’t fall asleep with the hiccups. But honestly, the fighting through the hiccups is worth the laugher. It always is.

So you may not have heard from me much lately. There are many things I want to write, but I’m in this season where a tiny human steals me away from all the things that were once on my list.

I grieve my dreams of being the best dietitian or the most influential writer or the most motivating and thoughtful friend. And today, in this season that is so very short I am a mother.

Yes, I can still have my dreams. Yes, I can still write (and I will still be writing here!). Yes, I can still tell you more than you ever wanted to know about diabetes.

But I dreamt for a long time about the day I would get to be a wife and a mother. And in this season, these are the dreams that are coming true.

It’s what motherhood looks like to me in the last days and months. It’s the giving up of myself to gain an exquisite task. I get to learn more and more about how the Lord gave himself up for us. I get to be a mother today.

 

 

 

Post-it Prayers

I've been meaning to write a little about prayer.

Last summer a good friend came to me for advice. She had been talking with a young girl about prayer. The young girl had lost someone very near, she said, "I prayed, a lot of people prayed, but God didn't do what we asked." My friend knew not what to say, and she came to me.

She came to me because she knew that once I had prayed for my little girl to live.

And God didn't give me what I asked.

So my friend, she came to me.

I want so badly to sit down to unwrap the reasons for prayer. But I know it will take much time, and I know that my sleep deprived mind cannot begin to unwrap the depth of the Lord's purpose for prayer in it's entirety. Prayer is complex and it's something spoken about often in the Bible and so I would be careless to quickly sum up why I think prayer is.

But today I'll share just a bit. Something that makes my heart smile.

Just enough to fit on a Post-It.

Or maybe a little more.


See I have another dear friend. Let's just call her 'Lyndsey.' She loves the Lord. She loves me and my husband well. From miles away when we lost Hannah she sent us verses and prayers and encouragement. She called up the local pizza place and had them deliver pizza to our front door one night. If carbs and scripture don't encourage, then I don't know what does.

Every day for the longest time after Hannah was born I'd wake up to a little text filled with scripture and prayers from my dear friend. And then, Lincoln came along.

We shared the news about Lincoln's VLCAD testing. I shared our very specific prayers requests and the very next day she sent me this.

 

 

A picture of a little Post-It.

 

It's a Post-It stuck to her computer screen that reminded her to pray for us. She committed to pray for us, and then

 

She told me she was praying.

 

While I don't have the time or the mind to tell you all the reasons for prayer. I can tell you that people pray for one another. I can tell you that in the Bible people prayed for one another. And not only that, they often told people that they were praying. Paul so often wrote of his prayers in his letters. I know this.

 

And so my dear friend told me she was praying, and not only did it encourage me in our struggles but it also inspired me to take on another's burden, too.

 

The day we got our final test results for Lincoln, that Post-It prayer friend we'll call "Lyndsey" told me she was going to throw away that Post-It. But then I begged her to send me this.

 

 

 



It's just a little Post-It. But before I let her toss it in the trash I told her to check off those boxes and send me a picture. And I think I just may frame that picture on our wall in our home so that I can remember the Lord's answer to our earnest prayers.

Because this time my baby is healthy.

Both times the Lord heard my cry.

But this time I got to keep my little baby. This time the Lord's plans for our lives were different.

And while I'd love to write more about how the Lord hears our prayers and how he responds, I'd love to write more about how prayers works along with God's will for our lives, I'd love to write about how maybe prayer is more than a fast food window that sometimes gets our order "wrong." But I think I'll need a little more time for that.

Right now I'm just blown away by the fact that I can pour out my heart to the God of the universe. That I can speak to the one who wove me and Hannah and Lincoln together. That my God sees me and loves me enough to hear my cry.

And I'm grateful for each box that was checked off on that little Post-It. And for the girl who checked them off for me. For the dear friend who, along with many of you, went to the Lord on my behalf every day.

Because I'll bet she was blessed because of it.

Somehow the Lord draws us together through prayer and suffering. That we can carry one another's burdens and then too have the great honor to rejoice alongside them.

Post-It Prayers...

Maybe it'll become a 'thing.'

He's Okay

So last month I ran to the blog to tell you all about our VLCAD news. I just couldn't wait! If you missed the initial blog post about Lincoln's VLCAD you can read it here. If you missed last Tuesday's post you can read it here.

I really want to say it again:

Praise Jesus!

We are so very glad, so very thankful that Lincoln's tests came back negative for VLCAD. And for those of you who have been asking questions or who would like details, this one's for you.

So Lincoln's initial newborn screening was elevated for VLCAD. His second newborn screening was possibly elevated for VLCAD, but that wasn't explained very clearly to us.

We were sent to Dallas to have a DNA blood test completed. That test showed that Lincoln had one genetic mutation that has been identified as a VLCAD gene mutation. So we know that Lincoln was at least a carrier of the VLCAD gene.

Apparently, or this is how it was explained to us, there are other genetic mutations that can cause VLCAD that haven't been so clearly identified yet. If the DNA blood test identified one known mutation, there was a possibility that Lincoln had another unidentified mutation that would cause him to not simply be a carrier with one gene, but be a symptomatic kiddo with VLCAD with two genes.

Did I lose anyone yet?

So about 8 weeks ago Lincoln had a skin biopsy done. The cells were grown in a lab and then they were tested for their metabolic reactions. This test would tell us exactly how Lincoln's body was reacting to food.

Since Lincoln was born we'd been feeding him every 2.5 or 3.5 hours. So we didn't know what his body would do in times of fasting. It's not quite safe to starve a baby to see how they react if the reaction could cause a number of horrible outcomes. So they run that test on the biopsied cells to be safe.

The results of the biopsy are the results we received last month.

Lincoln's cells responded as a carrier of VLCAD should. His cells did not respond like a person's cells with actual VLCAD.

When the lady called, again I knew who she was. She quickly told me Lincoln's results and I couldn't believe it. I kept asking,
"are there more tests?"
"are there more follow up visits?"
"if there anything we still need to monitor?"

and her answer was always "no."

She told me it was all over. We'd never see them again in their Dallas office for Lincoln and I could even rip up the scary emergency protocol letter they'd given us.

After asking all of my questions a second time I finally let her off the phone.

And I looked down at my little boy who was asleep in my arms.

He's okay.

He's more than okay, he's healthy.

And then I looked up to the God above and I thanked him. I praised his name.

Lincoln soon woke up and we spent the next hour singing praises to Jesus and dancing around. Really. Singing praise songs and dancing and smiling with my little boy in my arms.

A weight was lifted. The constant need to wonder if he needed more to eat. The constant awareness of the timing of the last feed and the countdown until the next one was needed. The constant setting of alarms at night, hoping that somehow the power wouldn't go out or the clock wouldn't malfunction because if it did I could only expect the worst.

I was lucky that I did not carry that weight alone. Not only did I have my husband and my friends and family (and my iPhone app), but most of all: my God. The one who carries my burdens, who holds the world, including our little Lincoln, in his hands.

And so the dancing and singing began.

But I know that there are mommas out there who didn't get the same call I did. I know there are mommas out there whose kiddos do have VLCAD, who still carry the weight. I know there are mommas who still wait the results of all the testing, wondering.

So today, I pray for those mommas. I pray for those kiddos. I pray for the return of our Lord and for a world without pain, but until then: I pray for the blessing of suffering to be apparent in their lives. I pray that they know the Lord. And I pray that their suffering is not lost.

But today, I rejoice. After rejoicing in suffering, I now rejoice in relief.

My little one, he's okay.