Making Sense of our Medically-Complex Adventure

Every once in a while I get to see the why’s behind our story. Last week, Uriah had a difficult 4 days following an intense and lengthy bronchoscopy. What was supposed to be same-day surgery became a 3 day PICU admission, a manual bagging, low SATS, three trach plugs, steroids for inflammation, and exhaustive hours spent watching my amazing active boy sleep restlessly and his SATS dance higher than I like.

He’s still recovering from his intense procedure but he is recovering and that is a blessing.

But, as a parent watching her child struggle, there are moments when I wonder why. Why us? Why does Uriah have to struggle? Why the difficulties? Why, why, why?

Tonight, as I cried my little cry, I looked at the stars and saw my favorite constellation … Orion. Long ago, when I was a teen and life felt so big, God so mysterious, and my purpose meaningless I made a pact that whenever I saw Orion I would choose to remember that the same God Who created those stars and has kept them in their place for centuries is the same God Who made and loves me.

And some 10 + years later those same stars greeted me on a night when I wondered why. Why does my son have to work so hard for everything? Why does a simple procedure have to become a threatening, code blue situation? How in the world do normal families function … what is it like to not have to worry about ventilator heaters, trach plugs, suctioning, oxygen SATS, tube feeds, and milestones? Why, why, why?

But then I remembered Uriah’s strength. I remembered his smiles, the silly toothy grins he gives us. My mind wandered over his latest milestone accomplishments — tummy crawling, scooting, saying Momma and Dadda, pursing his lips to whistle, a Swallow Study that showed no primary aspiration, sitting with almost no assistance. These are amazing things for a little boy like Uriah; he is literally a crawling, talking, smiling, scooting, happy miracle and every day, every accomplishment, makes those hard times worthwhile.

Then, there are the random emails I get from young mothers going through PPROM, miscarriages, and extreme fear in their pregnancies. These are the emails thanking me for reminding their authors that God is good, caring, and there in their troubles. These are the emails that make sense of my misdiagnosed miscarriage and all the other horrible aspects of my pregnancy.

And after a few moments reflecting on all this I am reminded, once again, that all life makes sense if I am thankful. And I have SO much to be glad for! For an amazing son who loves me, loves his Daddy, and loves life. For a husband who loves his family with everything in him. For milestones that doctors said would never come. For a home to keep and make memories in.

Though I still wish I could snap my fingers and help Uriah be completely healthy and free from support I am so thankful for where we are at. To be honest, I probably wouldn’t change a thing  because this life we are living is worth every hardship. I know those sentences conflict with each other but it is true … our life would never be this special, this unique, and this bonding if I could change it.

How do you make sense of the hard things in your life? Are there any special ways God reveals Himself in the mess?

 

Frannie

3 Tips on Taking Back Your Morning

Hello friendlies,

Some of my favorite things include early, slow mornings, writing the day’s tasks and schedule in a good planner, fresh coffee, and inspiring music. If I’m not careful, mom life leads to rushed mornings, skipped quiet times with the Lord, days that run me instead of my running my day, and too much coffee.

Here’s a few useful tools which have been wonderful in bringing some organization and make the mornings work for me:

Little Tip #1:

Buy a good planner. Right now I am using a Lesson Planner and LOVE it! A sweet friend sent this to me during Uriah’s NICU stay; I love how large each day is — there are so many boxes to write the day’s plans and aspirations in!

Little Tip #2:

Having a hard time fitting prayer time into your day? Me too … one tip I’ve really enjoyed learning from my Bible study is to talk with my Lord while I drink my cup of coffee. So simple, right? But I crave simple these days!

I can really tell the difference in my days when I take the time to talk with my Lord. The beauty of it is that it reminds me of God’s amazing friendship like love; He wants us to talk to Him! And He understands mommyhood, He understands caregivers.

Little Tip #3:

This isn’t really a tip unless you are a musical loving soul like me and are looking for a good recommendation. 😉 I am loving The Greatest Showman’s soundtrack. I feel like everyone is loving this story and I know why! (Warning, there are some curse words so, if that is something you are sensitive to, avoid the song The Other Side). My personal favorites are A Million Dreams and From Now On. Have you seen The Greatest Showman? What did you think?

I can almost always be found doing one of these tips throughout the day (or all at once); hence the coffee-breathed belting of A Million Dreams while I scribble over my planner. Simple joys that bring a little happiness into the day.

What are your tips for scheduling, connecting with the Lord, or a creative outlet? Share below in a comment … I love hearing from you!

Love, blessings, and coffee,

Frannie

Simple, Easy Ideas for Valentine’s Day for the Whole Family

“You mean more to me than anyone else in the whole wide world.”

– Peter Pan

This Valentine’s Day will be Uriah’s first at home! His first Valentines took place in the NICU — so thankful we are home and able to celebrate the holidays together (even though we do miss our nurses!).

My mom couldn’t be beat when it came to celebrating the holidays and Valentine’s Day was always made special for us children. Gift baskets would be filled with red and pink treats … little things like body soap, candies, candles, or notepads. She really has a gift for making holidays special! <3

This year, we’ll be celebrating Valentine’s Day together and I want to make it a special one for both Uriah and Dalton, my true Valentine!

Since there’s no danger of either reading this post I’ll let you in on the plan! (Real life readers … please keep my secret!) 😉

For Dalton, I will make a little gift basket with 5 coupons for a 1 hour massage by yours truly! (True love since I really stink at giving massages!). I’ll also tuck a pint of his favorite Halo Icecream, a kombucha drink, and a bar of Aldi dark chocolate. His favorites!

For Uriah, I’ll keep it simple with a little bag filled with a new teether, lavender baby lotion (since we’re out 😉 ), and a balloon tied to the side.

Simple yet meaningful gifts that won’t break the budget and will make the holiday special. What do you do for Valentine’s Day? Do you reserve gift giving for only your significant other or do you spread the love to the whole family?

Love, blessings, and a happy Valentine’s Day to you!

Frannie

Springtime Wishes

“Your time has come, now hasten little snowflakes. To vanish quite away; The spring-tide hours are sounding gentle warnings, forbidding you to stay.” — M.E. Hathaway

Just a little day dreaming about spring … soon the sunshine will last a little longer and the air won’t be as frosty. Soon there will be flower buds and bees. Soon we won’t have to bundle in a thousand coats to go out for a walk. Soon spring will be back and I will be welcoming it. <3

What are you looking forward to?

Love, blessings, and coffee,

Frannie

Photo Credit: follow link on picture

 

My Monday Cleaning Mantra

Mondays are cleaning days in our home. The goal is to get the dust dusted, the sinks scrubbed, bathrooms sanitized, beds changed, and floors swept and washed. Then, the rest of the week are upkeep days usually requiring light tidying.

While I sweep and dust and scrub I talk to Uriah about why we clean. I’ve repeated the reasons for why Momma sweeps: Momma sweeps to keep the dirt from getting on our feet. When we have dirt on our feet it gets into our beds and then we don’t sleep well and when we don’t sleep well we don’t feel well and can get sick. So this is why Momma sweeps.

To which I get the usual replies of gah gah gahhhhh or Mommmmma, mommmmma, momma, momma, momamomamomamomaoma!!! 🙂

Teaching Uriah while I work alleviates the ever present mommy guilt; it’s a strange notion that baby needs our attention all the time so other areas of life need to be forsaken to keep baby well-loved.  But mom guilt is silly. That’s why I’m learning the balance between focusing on Uriah and teaching him through my actions that the world doesn’t revolve around him (precious as he is). And one way to do that is talking to your baby as you work, especially children who have vision or mobility issues and who cannot follow momma to the kitchen when she does the dishes.

Keeping the house clean and neat is something I really enjoy doing; there is a lot of pleasure that comes from doing something well and keeping things maintained. Of course, there are days when keeping the house isn’t the most favorable task but I’m learning that keeping to the routine helps keep the mess down which makes future cleaning easier and more tackle-able (is this a word?). Waiting to clean till you see the mess or the dirt is defeating and discouraging; keep up with the mess and your friends will marvel and say fun things like your house is always clean or you should run a business because you are so organized!  

And you can smile, tell them your secrets, and enjoy the beauty that comes with weekly cleaning! 😀

Or, in the words of the magnificent Tasha Tudor, “I enjoy doing housework, ironing, washing, cooking, dishwashing. Whenever I get one of those questionnaires and they ask what is your profession, I always put down housewife. It’s an admirable profession, why apologize for it. You aren’t stupid because you’re a housewife. When you’re stirring the jam you can read Shakespeare.

Love, blessings, and coffee,

Frannie