Look Who Is Standing!

Sweet people … I can’t quite tell you the thrill and sob-filled joy and delight which accompanies watching your child overcome. This week, Uriah started standing. He’s initiating standing and supporting himself for seconds at a time. He still needs support but wow

Wow

I don’t think we can appreciate how much strength, balance, mental concentration, and work goes into growing up. Babies without delays roll over, crawl, stand, walk, and eat without any fuss; babies with delay require months (or years) of therapies, special equipment and exercises, occasional medications to strengthen or loosen muscles, personalized shoes and braces, and hours of repetitive play. 

These children are warriors! Hard-working, adventurous, striving little warriors eager to do life their way. 

And how exciting when we see their sweat, tears, and work pay off! 

Love from a very excited mama, 

Frannie

The Importance of Being Understood

Have you ever felt the ache to be understood? As mothers, I think there is a strong desire to have our fellow mama’s understand us, our choices, and our life situations.

We want people to understand, not just tolerate, why we’re late to church again. We want the picture-perfect Target moms to get why we’ve got circles under our eyes, a double shot Venti latte in hand, and three uncombed children practically spilling out of the cart. I think we want to be seen for the mess we are and accepted with a hearty “I’ve been there, I understand” smile.

I know I do.

Lately, I’ve been longing to be understood. I want people to understand the ache in my heart when I’m scouring grocery store aisles for prune juice and probiotics. I want to be understood when I walk through Hobby Lobby with a darling son and equipment that won’t stop alarming. I crave the acceptance that only comes from similar experiences.

I know my heart’s cry is needy. Why do you need to be understood, Frannie? Just do you. Be you. But it isn’t that easy. Feeling alone in your situation, whatever season of life it is, can feel exhausting.

Imagine the pure joy I had when someone accepted, understood, us. We were cruising JoAnn Fabric’s aisles and I was starting to feel myself shrinking as Uriah’s ventilator kept alarming. It’s this loud, repetitive sound that occurs when he is breathing fast and, since he was so happy and excited to be out of the house, the whole store could hear us coming. 😉

And whenever you carry a child with loud medical equipment you tend to get sweet, kind, pity-filled looks or stares. And as well-meaning as those looks may be, you can’t help but wish to be normal, not pitied, and understood.

As I was cruising past one aisle and entering another, I turned and saw a 15-ish year old young man with Dwarfism looking Uriah over. And, without one ounce of pity or look of sorrow, he looked me in the eyes and said, “That is a cute kid.”

That is a cute kid. 

No “how can I pray for your son?” No awkward side-eyes. No bold stares. No pity-filled, lip quivering looks. Nothing but pure admiration for a little boy who is so much more than the trach sticking out of his neck or the machine beeping wildly beneath the stroller.

It was in that moment that I realized that young man understood us. No, I’m not saying he understands everything about our medical journey or difficulties. He probably has no experience with a trach or feeding tube.

But he did understand what it means to be different. He understood sticking out in a crowd. He understood the fear, the worry, the awkwardness of not being normal.

And in his innocent way, I felt embraced. I felt like he was part of the tribe I needed to find. I felt like Uriah was seen for who he was and accepted without question.

(I always worry when I share these posts that you, my amazing reader and friend, will worry that you’re making me feel uncomfortable, that you’re part of my complaint. I promise you, you aren’t. We have an amazing group of friends across this nation who have embraced us, given us courage, and love! I tend to only struggle with these feelings when I’m surrounded by folk who don’t know us.)

How about you, friend? Are you longing for someone to simply look at you and understand? Are you hoping to find a tribe who accepts you, your children, husband, home, and time schedule without question or judgement? You’re not alone, I promise. We’re all looking for friends who understand. 

The beautiful thing is that there is always one Who does understand and that is our Heavenly Father. He knows our hearts, knows why each tear falls, and invites us to cast every care on His Son, Jesus. He came to tend to the broken, the weary, and the hurting.

And after He works on us, we can find ways to understand and be there for others. 

Love, blessings, and coffee,

Frannie

Free Printables for Private Home Nursing Binders

Having medically complex kiddos is an amazing, unique responsibility that has ordinary parents thinking about and doing un-ordinary things. One of those unique aspects is private, home nursing.

Good, bad, or indifferent, home nursing is tricky business. I created these free Nursing Communication Book labels to help families communicate and interact better with the nurses working in their home. Each file has nine 8.5 x 11 inch pages that you can print, three-hole punch, and place in a binder. Then, get creative by making your binder unique to your family by writing or typing your family’s specific information.

 

Having home nursing can be a huge blessing but it can also be a huge burden. I believe having a Nursing Communication Book is a simple, easy way to keep everyone on the same page. Have a single spot for house rules, emergency plans, and contact information will eliminate confusion and excuses for irresponsible behavior.

Want your relationship with your nursing staff to be excellent? I highly recommend reading Charrisse Montgomery’s book Home Care CEO. I read this quick, easy-to-read book while we were still in the NICU and got so many excellent ideas for managing the medical side of my son’s home care.

For the blue file click on this Dropbox link and download it. For the purple file follow this Dropbox link. 🙂 Please comment below if you have any questions. I’m sorry I cannot currently write the specifics behind each label; it would be impossible to write a welcome page or a list of house rules that each family could use. But hopefully, these simple labels will inspire you and bring you one step closer to a respectful, productive relationship with the nursing staff working in your home.

This is an example of my notebook. 🙂 (Click on the pictures for a larger view).

With love, blessings, and coffee,

Frannie