Tidings of Comfort and Joy

Hey friend, I’m about to let you off the hook.

You are allowed to NOT love Christmas.

That’s right. I said it.

It’s ok if Christmas sucks for you. Or if you flat out hate this season.

You don’t have to be Buddy the Elf.

You don’t have to radiate Christmas spirit and put antlers on your car.

It’s ok if the shopping crowds give you anxiety and you just can’t bring yourself to go to any parties.

I’m giving you permission to be a bit of a Grinch if you need to.

For a lot of us….Christmas isn’t as fun. Family pictures make us sad. Shopping for gifts feels incomplete. Decorations feel lacking. And Christmas spirit feels forced.

Because we are missing someone at Christmas.

Whether it’s the first year or the 50th Christmas will never be the same.

I used to be the person that was over the top, Buddy the Elf, I LOVE CHRISTMAS AND IF YOU DON’T LOVE CHRISTMAS THEN YOU ARE LAME!!!! I didn’t see the mourners at Christmas. I didn’t understand not being able to set aside sadness for Christmas Spirit.

It’s Christmas after all. ‘The Most Wonderful Time of the Year.’

But I get it now.

I get what it feels like to know the Joy of Christmas, the Reason for the Season….but to be kind of uninterested in the commercial frivolity of it.

When your child has cancer during the holidays it changes your perspective.

When you find out your child is dying 3 days before Christmas then dies 10 days after Christmas….the holidays are forever different.

Even with a new baby this year, I’m still missing my other baby. The joy is incomplete.

I do, however, have a newfound appreciation for the true meaning behind Christmas. The birth of the Savior of the World. Mighty Counselor. Prince of Peace. The Lamb.


Without the birth of the Savior, there would be no point to any of this. No reason for Hope. No source of Joy. And no comfort in sadness.

Without Christmas there would be no Easter.

If the Baby in the manger wasn’t born to die on the cross, then He would never have risen from the grave to save us from sin.

Because of Christmas, those of us missing someone can find hope and joy in this season that is hard.

So I’m letting you off the hook friend, you can ‘hate’ Christmas….but still love the Christ.

“She will bear a son, and you shall call his name Jesus, for he will save his people from their sins.”

Matthew 1:21

Relearning Lessons

The beginning of last week was rough.

We had a busy weekend so baby Connor slept all day Sunday. That’s not an exaggeration. He barely woke up to eat every few hours but those eyes stayed closed all day long. So, of course, he was up partying all night Sunday night. I even took him to our guest room so Jonathan could sleep because I figured at least one of us should get some sleep.

Monday morning, we were supposed to get up and head to Dallas for Connor’s first visit to Children’s. Since SO many people donated to Gold Network’s prize closet fundraiser in Sophie’s name, we wanted to go help deliver all of the goodies and show Connor where his sister was so brave. However, after him not sleeping, we decided putting him in the car for two hours just wasn’t what was best for him. And I was so bummed. I wanted to go so badly. We haven’t been to visit since Sophie’s birthday in March and I just really wanted to go. I know there will be other trips when he’s older and we’ll take him soon and it’ll be great. I was still just disappointed. With Connor’s birth at the beginning of September, I didn’t get to participate in any Childhood Cancer Awareness Month events so I wanted to do this for her…and for me honestly. But we didn’t, and I was sad.

That sad carried into a long Monday at home alone with a very fussy and clingy baby. You’d think after partying all of Sunday night that he’d sleep a lot on Monday? Not so much. He was awake and wanting to be help from 10AM until about 4 when he took a 40 minute nap and then it was back to being fussy and clingy.

So, you’re thinking that means he must’ve slept so much on Monday night right?


He slept in basically 90 minute intervals and was awake for an hour in between those intervals with gas and wanting to use me as a chew toy and pacifier. It was rough.

Tuesday dawned and we started our day with him peeing all over his own face and my bed because…mom keeps forgetting she has a little boy this time. Then there was an up the back blowout and so much spit up. Like the thick, sticky spit up. He also barely let us put him down and mainly wanted me.

And I was frustrated.

While I am so incredibly thankful for the gift of my sweet son-knowing how short life can be, how precious it is, and how hard we tried to get him here. So thankful. I love him so much and am so obsessed with him. But I was still frustrated. Its hard being in the throws of postpartum hormones and the things that come with that. For me it’s constant hot flashing, dry skin, breakouts, neck and back aches from nursing A LOT, hormone headaches, and sore breasts from, again nursing A LOT. (For real-this kid nurses 35 hours a day I swear.) It’s hard for me relearning kind of how to be a mom. I haven’t had a newborn in almost 5 years and I haven’t ‘mommed’ anyone since January 4, 2018. So it’s hard momming a new baby while grieving his sister. And being tired is just hard for anyone but I think especially for a new mom.

Connor is way more of a mama’s baby than Sophie was. Soph was independent from day one-perfectly happy in the swing or bassinet by herself. Connor on the other hand wants to be held and cuddled. He wants me 90% of the time. My heart loves it-God knew my heart needed a cuddly baby that loves me as much as I love him. It does get tiring though never getting a break.

But-God stepped into my chaos in the form of my husband.

Jonathan walked in the door Tuesday evening, took one look at me…walking around the living room with a fussy baby that had just projectile spit all over me. My face must’ve looked a bit scary because he said ‘Why don’t you give me the baby, leave a bottle with me, and go get an uninterrupted workout and a hot shower’

Bless that man.

He knew he was in for an hour of a fussy baby that wanted me and hates the bottle. He knew he’d probably be bouncing and shushing him. But he loves him and he loves me and he knew I needed that hour. Plus-he doesn’t get near enough cuddles so obviously he could care less if he got fussy cuddles as long as there were cuddles to be had. And guess what?

We all survived and hit the reset button.

I got a great, sweaty workout in a AND a hot shower. Jonathan got some much needed one on one time and cuddles with Connor. And Connor…well, he did begrudgingly accept 4oz of milk from a bottle and fell asleep in his daddy’s arms.

I instantly felt better.

We ended up getting great sleep that night.

And the rest of the week has carried on uneventfully.

We are parenting. We are grieving.

I wish my girl was here for it so much….but I sure do Love these two boys and our imperfect life together.

Time Goes On

One year ago we were visiting the hospital and our sweet Addie Leigh after a hectic day in airports coming home from my sister’s wedding in Seattle.

At the time-one of these nurses had a tiny human, One was cooking a sweet baby, I was in the middle of a chemical pregnancy, and two of them were just being awesome.

Today…one year later…Addie Leigh is done with hospital chemo and almost done with treatment. My sister has been married a year. The tiny humans are basically grown up, two of us now have perfect baby boys born 3 days apart, and another has a new blingy ring on her finger! And we are all still being awesome. (Obviously)

But time has gone on. As it does.

It may seem weird or morbid to miss them and I miss life at the hospital but….it’s where I see my baby. It’s where I walk where she walked and get to hug people that love her and us.

The people that held her and held us. The only people other than us that know just how brave my girl was…they know every aspect of those 8 months of our lives because they were there. They didn’t read about it on Social Media. They didn’t get text updates or secondhand stories. They didn’t try to make us feel ‘normal’. They didn’t avoid us or get uncomfortable around us. They witnessed just how sick she got and just how disabled she was.

They lived it with us everyday for 232 days. And I miss it.

I miss rounds. I miss keeping up with the Beads of Courage Journal. I miss writing everything in my notebook. I miss asking for meds and helping with therapy. I miss the terms that were part of my daily life. I miss unhooking the feeding tube and changing the sheets. I miss cleaning the room with alcohol wipes. I miss weighing diapers and hoarding bath wipes. I miss our walking route on the 6th floor. I miss catching up with whoever was on each day. I miss our techs, PA’s, NPs, and nurses. I miss Dr. Watt and Dr. Slone. I miss wagons and wheelchairs. I miss mouth swabs and diaper cream. I miss blood work printouts and medicine schedules. I miss gloves and hospital grade hand sanitizer. I miss the pink fuzzy pillow and the stack of clean blankets we changed out daily. I miss strawberry water and the best tator tots ever. I miss Princess Bibs and Minnie Mouse Hospital gowns. I miss the trains at Children’s and the stars on the ceiling. I miss massaging tiny feet and rubbing a fuzzy head.

I even miss the stupid talking elevators, beeping IV pumps, and sleeping on an egg crate.

I miss being around people who truly got it.

Most of all….I miss my sweet Sophie that all of these things revolved around. Everything about her…even the hard stuff because she was still here.

But just like this picture….time has gone on.

One year, 9 months, and 6 days.

Time without her and time away from life at the hospital that felt so normal. That time was so hard. So uncertain and so stressful but it’s part of our story. It’s part of who we are. And in a weird way, I love it. Just like I love these 4 (and SO MANY MORE on CCBD) and I love reminders like these of time spent with them.

Because ultimately these reminders remind me of my girl.

My brave brave girl.

And I can’t wait to take her little brother to this place and show him where she walked and all the people who love her too.

Connor’s Birth Day

On September 4, 2019 we added our Rainbow Baby Brother to our family!

I was 38 weeks and 2 days pregnant and had my routine 38 week checkup with my doctor. At 37 weeks I was 3cm dilated and Sophie was born at 38 weeks so Jonathan decided to go to this checkup with me just in case.When we got to my appointment my blood pressure was pretty high. 165/93 and Connor’s heart rate was in the 110-115 range so my doctor decided that it was best to just get him here! Jonathan and I headed from the doctor’s office to the hospital! Thankfully, I had put my labor bag in the car just in case!

I will say, checking into the labor and delivery floor and being put in the same triage area where I was when I was in Labor with Sophie was harder than I expected. Once I got settled, Jonathan went home to grab his stuff and sitting there alone I was having to swallow some tears and panic a bit. THANKFULLY i knew my triage nurse! In fact, I taught her son 6 years ago when he was in 3rd grade! She knows all about Sophie so I didn’t have to explain it and that alone was just comforting.

Fast forward to about an hour later and I was in a labor room with my new nurse Betsy who was Precious and amazing! She also knew about Sophie and had flower our story from my sister-in-law who used to work on this L&D floor.

At 11:15 we started my pitocin and hooked up Connor and myself to monitors and fluids. My mom and sister got there shortly after!

At 1:00 my doctor came in and broke my water and stuff got real! My contractions started coming very strong and frequent about 10 minutes later.

At 2:30 I was dilated to 5cm and got my blessed epidural and it honestly was the perfect placement. I still felt my contractions but, they were manageable and I could still feel my legs and feet. With Sophie my epidural numbed me completely and I felt nothing which is great…it just was harder to push because I couldn’t feel anything.

I was breathing through my contractions and my blood pressure was still sky high and Connor’s heart rate was fine…just on the lower side. I just knew that my blood pressure was going to cause me to have a c-section which I really did not want but I also wanted what was safest for both of us. But again, thankfully, only 2 hours after my epidural, I was ‘complete’ -10cm- and ready to push!

Holding in my emotions was a struggle. I knew if I let the flood out that I wouldn’t be able to breathe to push. But the wave of it was overwhelming. I started pushing at 4:48 and 7 minutes later, after 4 pushes, Connor Jackson Skiles cane into our world at 4:55 pm. And we sobbed. It honestly took us both by surprise. We both knew we’d be emotional and there would be tears but…the absolute sobs were a bit unexpected.

He was here and perfect. 7lbs 4oz And 19.25 inches long. He had Sophie’s nose and lips and dark hard but also was very much his own little person. They put him on my chest and I was complete again…or as complete as I can be without Sophie. He looked up at me and sighed. He knew he was home too. It was one of the most precious moments of my life.

The thankfulness that we were overcome with was so powerful. We were thankful, so thankful when Sophie was born…but we didn’t know huge loss. This time….we knew how short and precious out lives are….we knew what it feels like to lose a child. And that made holding our rainbow so joyful and sad and and humbling and all the things. He didn’t fill the hole Sophie’s death left but, he definitely helped it feel redeemed a bit.

The last month has been so incredible. Connor is a fairly easy baby. He eats like a champ…even though he eats fairly often and won’t take a bottle. I’m an on call milk servant…I’ve accepted it. He also wants to be held most of the time, which we all are happy to do. He loves his bath and hates diaper changes. He also has basically the cutest little face and I’m basically obsessed with him. I’d forgotten some of the less glamorous and cute aspects of postpartum and newborn life but…even those things…I’ve been able to be thankful because I’m just SO.DANG.HAPPY. To be someone’s mom again. To have him here to hold and kiss and talk to.

It hasn’t taken away the grief. In fact, every day just about, there’s a moment or several moments where I think…she should be here. And it makes me so incredibly sad. But at the same time I know she’s here. I know she’s apart of all of it. And the best part….she’s whole and healed and perfect. She’s better off than all of us.

And even though we are truly loving everyday with Connor. We are still full of Hope because we are continually one day closer to eternity with her.

And I’m thankful.