You, alone.

Last night it was hard to put you to bed all alone in the room you share with Ashton. It was too quiet for me and I know it must have been for you.  Ashton and Kiera spent the night at Grandma's and Papa's house since we needed to leave so early for your surgery.

Daddy and I got up early and loaded you in the back seat, alone. Together we drive to St. Paul, checked you in, met with your entire operating room team, and waited for the moment they would have us go back together to the OR.

As we sat in the OR room waiting for the anesthetists to get your mask ready for the ninth time in your little life, for the first time you told me you missed your brother.  I'm sure because he so often is by your side for these kind of visits- he helps you be brave.  I miss him, too. In these moments I miss it all- all the laughter and happiness that radiate from you, Ashton, and Kiera.  It doesn't exist here. It doesn't exist in the OR or in the room where we wait for you to come back to us from surgery. 

When the doctor was ready you took a few combative breaths from the mask and off to dreamland you went... alone.

I'm so sorry it has to be this way, baby.   I'm so sorry that so many of you battles have to be fought and won alone.  It's no surprise God has made you the strongest one in our family in sheer will power and brute strength- you need it. Sometimes your bull headed determination is a challenge to wrangle in our everyday life, but I know it's what gets you through moments like this. You have endured more challenges in your short life than entire communities of people have in their lifetimes.  You are so strong and so brave. You are my hero, Owen. 

We will always be there to pick you up and cheer you on when the days are hard. Please don't get discouraged when you feel alone, because you're not.  Just because you can't see us doesn't mean we're not with you. Your God will always be with you, me and Daddy will always be here, your brother and sister, your family and the many people you inspire by your courage. We will always be there to cheer you on and  give you the courage to win the next battle. 

In moments like this, I hope your heart will always be so full of love that it's impossible for you to really feel alone.

Why.

The last few weeks Ashton & I have been regularly butting heads on a myriad of topics, most have been testing his power & pecking order. It's been exhausting and a strain on our entire family dynamic, but this too shall pass.

Ashton's been mad, anxious, and frustrated since yesterday morning- but this is different.  This isn't his typical eight-year-old tantrum we've learned to navigate around, he's rattled by an unfair world. We've begun a new chapter in managing a lifetime of chronic illness- when your child unequivocally understands that life isn't fair and these routines and medications are forever. Forever.

Yesterday morning before dropping the kids off at camp I had to drop off  three human specimen boxes at the lab- these lab kits are mailed to us by the boys specialists at the Mayo Clinic in Rochester 3-4 times a year.  They contain many empty blood vials and very detailed lab orders. We drop them off a few days ahead so the lab has a chance to sort through what is needed before our arrival.  Tomorrow morning at 8am sharp our local lab will complete the blood draws for Ashton & Owen, mail the vials on dry ice to Rochester, the lab in Rochester will process the samples, and results will be ready for discussion during our visit next week.

While Owen was happily cheering that he did not have to go into the clinic doors, Ashton was crying and asking WHY do we have to do this? Ashton is now at the age where he has a more in-depth understanding of what all the pieces to the puzzle mean.  He knows that when I drop off lab kits that it's not for me, not for Daddy, and not for Kiera- it's for him and Owen.

There is no other scientific method to test the levels of hormones in their bodies, blood work is required.  It's an awful task to comfort a child that is living in anticipation of tomorrows pain.  "Will it hurt?" ..."Yes, Ashton. Only a little, you know that." ..."Why do I have to do this?"  ..."To help keep you healthy, your body doesn't always want to do exactly what it's suppose to. Your doctors need to check to see that everything is working just right for you to grow and learn."  ..."All because of my stupid body." ..sigh.

It was easier when they were babies. When we only had to cuddle them and comfort their cries. It was easier to rationalize and have faith in a plan bigger than ourselves.  Now those babies have developed complex emotions and articulate language skills...  I can't coo and cuddle away the cries that fiercely demand explanation for his struggles. I can't articulate his illness in a way that eight-year-old can find peace.

I can't explain why.