Tuesday, November 4, 2014

Finding Normal

Brace yourself. This isn't the post you probably think it is. And it includes nudity. Don't say you weren't warned. Keeping it real, folks...

Today is Monday. Monday is family day. Family day consists of us being Chloe's nurses. We do it all on our own on Mondays from 6am until 9pm. It's our rare chance at personal family time. We do this on Saturdays as well. And though we're gaining nurses we love, and are so thankful for, we so look forward to those days and wish we had that each day.

Today has been relaxing. At least somewhat. This morning was a bit more of a whirlwind. Chloe had a rough evening yesterday and ended up throwing up 30ml of fluid...that's over an hour's worth of feeding. It's like a thanksgiving meal to her. And it all came up in three episodes back to back to back. Our nurse was awesome and knew to sit her up so she wouldn't choke on it, even though she was still coughing on it. I was upstairs bathing kids when this happened. To say it scared me a bit is an understatement. I was then on the phone with the Home Vent team at Children's asking what we should do. In theory, she shouldn't throw up with her fundo she had this summer, but it is technically possible, especially the older/bigger she gets. And thus she did. They said it is most likely that she is just not tolerating her increase in feeds (we went up from 25ml/hr to 26ml/hr this week) and to go back down to 25ml/hr, and if more throwing up continues to give her Pedialite via her tube instead of formula.

I found myself two hours later, once Alan was home from work, purchasing Pedialite at my Happy Place (Target) just to be armed incase it happened again. And I also found myself calling my hubs to say, "Hey, can you please call Home Vent back and just ask to make total sure for worst case scenario, what to do if she throws up again and if she'd aspirate? Do we bag her? Do we do an emergency trach change and then bag her?? Do we do CPR and bag until EMS arrives??"

That was our "normal" yesterday. That was our "this is our new life" moment. We truly have conversations including EMS and CPR often. Yesterday I cleaned out the Frozen puzzle case that was having issues and put the puzzle pieces in baggies, then looked at the bottom board of the base, and realized it'd work perfect as a CPR board for her size, so under the crib it went. See, this is normal for us.

A few days ago I was released from duty to go to Radina's and sip coffee and work on my Etsy shop. I was on a high because the day also included a date night with my hubs after the 9pm nurses showed up. There was a loophole in the universe and we ended up with two night nurses because one was still orientating. We had a friend lined up to be there with the kids and do bedtime so we could sneak out, knowing that there were three competent adults in our home loving on ALL our kids. But alas, twenty-three sips into my pumpkin spice latte, I received the email saying one of the nurses was sick. I knew immediately our much anticipated date night was not going to happen. I was bummed. It takes a lot to pull off date night. We need it for the sake of our marriage and sanity. We needed it something fierce, but it wasn't going to happen. But we tried our best to not get too upset and just went with it-what else could we do?

This was our "normal" the other day. No date night was "normal" for us. No date night in the last month has been our "normal"...unless you count sneaking out of the PICU for two hours out at Taco Republic the eve before we brought her home again.

We're getting slowly acquainted with this "new normal"...and yet, there's nothing normal about it.

Well, there might be a few normal moments. Normal parenting moments. Like noticing the boogies wiped on the hallway wall and asking my husband if he knew anything about the boogies about 3 foot high wiped on the wall. And then today, when my little ballet dancer twirled her way over to the stairs and plopped down on them. I asked what she was doing, and she leaned forward so I could see her finger. I asked her if she had a boogie and was about to wipe it on the wall. At least she was honest in her confession.

So today, we relaxed. We baked biscotti together. We traded off calling the various doctors this morning to update them from last night's spewing episode. We talked to the company that delivers her Lovenox injections. We updated Home Vent team. We received our November supplies from our med supply company in town. It's like Christmas in here with boxes and bags everywhere of supplies. And Abi twirled in her dress and asked each of us to dance with her. And we did. To Christmas music blaring in the house. And there was tickle time with mommy and children. And there was book reading time and cuddles with daddy and children. And Isaac's wild imagination today. And Abi's gentle, loving spirit, telling us a thousand times over, "I wuv you." And melting our hearts each time.

But there was still a moment this afternoon where I looked at my hubs and said I was anxious, and I didn't even know why, other than because I've barely been out of the house in the last two weeks, other than to the hospital to get her levels drawn and to Target to grab a few groceries. Because I read a chapter in the book Bittersweet about this lady having a dinner party with all her friends in their different walks in life and how sweet it was to read of such togetherness, and realized I haven't been surrounded by my girlfriends for chat and hangout time in forever. Because we haven't done one unscheduled thing in months. Because we can't do anything unscheduled these days because it's all dictated by the nursing schedule. Because it was looking gloomy outside today and depressing my mood. Because I was in a funk and anxious. So upstairs I went, for a 30min soak in a hot, steamy tub.

And two minutes later, a little princess followed me.

As I set my Real Simple magazine on the edge of the tub and slid my foot in to test the hot water, a little voice rang out right behind my bum, and she was already stripping down...

"Mama, are you taking baff? You're taking a baff!! Oh, oh can I take a baff wif you!!?"

"No sweet, sweet little child, you may not. Mommy needs some mommy time."

"Oh, ok. Well I will rub your back!" Then she disappeared, only to return seconds later with my lotion on her tiny little hands. The smell of eucalyptus infused my senses as she gently rubbed and patted my back and arm.

"Ok, thank you for my back rub, sweetie! Now why don't you go downstairs and play."

"Oh, my hands is sticky now, Mama. I go wash dem in da sink!"

Meanwhile, a preschooler wandered in, and this time I tried to hide the nethers and peaks a bit for a tad more privacy and a bit more innocence to his eyes.

"Hey bud, why don't you go downstairs and play video games with daddy!!"

"Oh! Good idea!!!!" He ran off, only to return seconds later saying daddy said after Mommy gets out of her bath can they play video games. Facepalm.

"So Mommy, did you know that a new SONIC movie is coming out!!!! It's coming out and it's Sonic the Hedgehog. Do you remember Sonic?? I wuv to pway Sonic!!!! And it's a MOVIE!!! Do you like Sonic.....," My sweet, growing boy, proceeded to tell me all about his favorite video game character, while one hand rested on the edge of the tub and the other on my back, rubbing.

"Hey buddy, how about you go play downstairs for a bit, Ok? Mommy needs some quiet time."

"Oh Mommy, you forgot to take your ring off!!! You need to take your ring off when you're in da baf. You should take your ring off. Oh, and you can pway wif my toys if you want. It's ok, they're right there. You can play wif them. Is the water hot? Or just warm? I don't like my baths hot, just warm. Daddy makes them too hot, but you make them warm. So do you know what?? Sonic is awesome!!...." By now he was sitting on the edge of the tub, one pudgy little boy hand, with dirt under the nails, rubbing my back while the other rested on the tub edge to balance him. He talked non-stop for nearly ten minutes about Sonic and Sonic racing, his sweet breath only inches from my face. He was so excited. He just wanted to talk to me...and he had me cornered to do it. And he rubbed my back the entire time. And it was so sweet. A bit awkward, but sweet.

And then I couldn't help but laugh as I looked over and asked the princess, with her auburn hair falling in tangled wisps around her neck and face, wearing her princess dress (hand-me-down flower girl dress), with her Frozen necklace and her Hello Kitty necklace on, and what appeared to look like she was putting on my makeup. I asked her what she was up to, and a little head peeked around the door, holding a Q-tip...IN her ear!

"Abi no!! Take it out!!! Only Mommy's do that!! Take it out. You're not obeying! I said stop! Throw it away! Only Mommy does that!!!"

She knew I was cornered and couldn't get to her, so she stood there, starring me in the eye, with the Q-Tip in her ear. Then she whipped it out and said, while looking cross-eyed at it, "Eeww. Mommy my ear had a boogie in it. See!" Sigh. She then proceeded to throw it in the mounting pile of trash that I keep meaning to empty out, and her princess ruffles brushing past the toilet seat while I freaked out in my mind about all the germs that were creeping onto it!

Next, the little princess sat on the edge of the tub, rubbing my arm, while my little man in his Batman shirt and ripped-knee holes sat on it as well, also rubbing my back, all the while I was still desperately trying to not bare all. We were quite the sight. And they gibbered and jabbered and I laughed. Till I cried. And hollered for Alan. Who walked in, took one look, and burst out laughing and asked if he edited it and censored it if he could get a picture for the kids' baby books. NO. But we laughed so hard I nearly peed, which wasn't a possibility since I was in the tub!!!

So much for five minutes of peace. He left with the kids and locked the door behind him. I thought I was in the clear to relax, until I heard a muffled voice pressed against the door in "Do You Wanna Build A Snowman?" fashion saying, "Mommy, wet me in! Wet me in! I want to come see you! I'm tired of pwaying downstairs."

We laughed through it. I went upstairs depressed, anxious, somewhat sad and self pity party for not getting more time out of the house, but then realized that these moments, these awkward family moments of laughter and love and togetherness (although the family bath was a bit too close for me), this is what it's about.

A friend and I were discussing the term normal the other day, and she said you know, there's really no normal, for anyone. That the word normal isn't really a good word to describe anything because what is normal? It's different for each person and each family. And in our case, we've been trying so hard to cling to the idea of a new normal. But now...I'm giving up on the word entirely. We're living life. One day at a time. One crazy, wacky, fun, sorrow and joy filled, day to day life. I choose to say we're living life, and an abundant life at that, not choosing to say we're finally figuring out our new normal. Because it doesn't exist. And I'm finally letting go of hoping it would.

And that's ok.

Praising Him tonight for these precious, tender, awkward moments of joy.


  1. Jodie...so thankful for your willingness to share your day-to-day life with us! It really helps me to know how to pray, and I'm certain it helps to build community, even if we're not all face-to-face.

    We're just a few blocks away...should you need something - a Starbucks Caramel Brulee Latte or groceries from Dillon's or whatever. Just shoot me an email or send me a facebook message or give me a call (410.95three4).

    Tracy Emery