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?

Wrong.

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.