Handling Your Child’s Diagnosis

Dear mama,

If you’re here because your sweet baby has received a medical diagnosis I want you to know that you’re not alone. Here are four things that helped me through the first day we learned of our baby’s upcoming difficulties.

First, you probably jumped right into the world of research and skipped one of the most important steps to accepting your new life — grief. Sweet friend, please give yourself permission to cry. We tend to think I need to be strong now so we hold in the tears that bring us so much healing.  I know because I’ve been in your place. 

 In counting, my son has received at least 10 different diagnosis’ (some were incorrect). The first one we were given was Hydrocephalus. I had gone into my 22 week check up thinking all was well until I saw the ultrasound tech wipe tears from her eyes. Everything changed that day.

I left the office and called my husband’s work and asked him to come home early. Before leaving, I tried to eat a banana but it got all muddied and soggy from my weeping. I drove home weeping wondering what our sweet child’s life would be like. Of course, I imagined the worse (and so will you). 

Once home, my hubby held me close while I explained the issues. Our landlord showed up for some maintenance and Dalton kindly asked him to leave so we could have some privacy. We just received bad news about the baby, was his words. 

We called our parents, snuggled on the couch, and ate a gallon of ice cream together and watched tv. Such ordinary moments in an extraordinary day. 

And that’s what I want you to do first, mama. I want you to give yourself the permission and space to cry a little (or a lot). Weep into your husband’s arms. Weep over the phone to your mom. Weep on your bed while you beg God for answers. It’s okay to grieve the loss of normalcy. 

Then, I want you get yourself some ice cream or chocolates or a steamy bowl of macaroni and cheese. Whatever it is that brings you comfort (even a nap if that’s your thing) I want you to give yourself permission to enjoy. You’re life has just been flipped upside down and a little chocolate cake will help it feel a little more upright.

If you’ve taken the time to acknowledge your grief and find some small source of comfort now you can get on the internet. 

But don’t Google. Not now (and maybe not ever). Google displays the worst of the worst possible scenarios. When I researched Hydrocephalus for the first time I saw sweet children so distorted by their condition I became nauseous. Googling your child’s diagnosis will only lead to anxiety. 

Instead of Googling, I want you to go to Facebook and search for different support groups specific to your child’s anomalies. For me, I found an amazing group for parents with children who have Hydrocephalus. Later, when my water broke at 24 weeks, I found a support group meant to encourage and inform women who are dealing with PPROM. It was because of these support groups that I knew Uriah’s original doctors did not have his best interest at heart and we transferred to a new hospital and found the best treatment for him. 

Join these groups and ask all the questions. These amazing parents will welcome you with open arms because they have all been in your shoes! Ask parents how their children are doing developmentally and they’ll most likely surprise you with adorable pictures, milestone praises, and real life advice. 

Sweet mama, now that you’ve taken the time to cry a little cry, comfort your soul, and connect with real families I want you to read this amazing post by Jenna. She shares a story that perfectly sums up this amazing journey of medical complexities. 

I know you wish you weren’t on this journey. I understand because I’ve been there too. And I’m not promising everything will perfect; in fact, there will be more hard moments than you ever imagined possible. 

But, sweet friend, this challenge isn’t the end. It’s just the beginning of a beautiful new journey. And once you accept that (and give yourself a lot of grace along the way) I promise you’ll smile again. 

Until then, grieve, comfort, and reach out. And know that God is with you, sweet friend. He hasn’t forsaken you or walked away — He’s right there ready to walk you through this time. He loves you and your sweet family beyond words. 

Have you just received a diagnosis for your child? Mama, I am here for you if you need a listening ear or prayer request. Leave me a comment and I’ll do my best to connect!

Love, blessings, and coffee, 

Frannie

How a Hug Changed my Parenting

One day, if I’m ever so old and grey that younger folk ask for advice on mothering, I’ll make sure I remind them of one simple thing: hug your children. 

It’s simple, right? But for the first year I missed this. For whatever reason (tubes, medical equipment, low muscle strength, slight difficulty, fear, etc.) I always held Uriah faced away from me. We snuggled lots and lots so I never noticed what I was missing until, one day, I decided to hold him facing me. 

As I straddled his little legs over my waist something pure magic happened. His eye contact increased, his mimicking advanced, and he hugged me.  

I can’t really describe the cry-your-eyes-out-with-joy feelings that come when your baby purposefully shows affection to you for the first time but it is, without a doubt, one of the most wonderful moments you can have. 

And the hugs have only gotten better. It’s amazing the impact physical affection has on the intellectual, emotional, and physical development of our babies but it’s huge! Eye sight, language skills, social behaviors, and family affection all benefit from frequent connection. 

Now, I sit with Uriah facing me several times a day. These are the moments when we sing songs and nursery rhymes, practice our whistling and raspberry blowing, tickle each other, gives hugs, laugh, smile, and grow the trust and affection between mother and son. These moments are my absolute favorite of the day. 

And while I know our case was extreme I think that there are days when even ordinary, non-medically complex mamas forget to take the time to hug their kiddos. Some days we’re just trying to keep everyone fed and alive. 

But, sweet mama, next time you’re tempted to be frustrated or just keep busy, I hope you take a moment to look your little in the eye and give them a hug. It doesn’t need to be long (they probably won’t want to stay still for long anyway) but it does need to happen. 

And the results will be just as magical for you too — your little one’s love, behavior, connection, friendship, and possibly other developmental skills will only benefit. 

Tell me, how do you show affection to your littles? Is showing affection difficult for you or are you a natural born hugger? (I’m not 😉 ) Do you have any favorite nursery rhymes or songs you sing while cuddling? Leave me a comment below — I’d love to hear your thoughts! 

With love, blessings, and coffee, 

Frannie

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

Inspiring my Motherhood

There are some days when my spirit, my energy, and my inspiration feel as uninspired as that lonely left sock without a mate who perpetually ends up in the bottom of the laundry bin. You know what I’m talking about, right? That’s motherhood for you — laundry unites us all. 😉

But I’m tired of feeling tired and lackluster about motherhood. The constant nag for freedom, less responsibility, or a little less whine is a drain on the soul — my lack of contentment and gratitude is killing my motherhood. 

Don’t misunderstand me … I’m all about mamas’ getting the rest (both physically and emotionally) they need. I’m not ditching the intentional rest I need in order to be a better wife, mother, and friend. 

But I am ditching the unthankfulness I’ve allowed to seep into my heart; goodbye discontentment and sour attitudes. I promise, I won’t miss you. 

Instead, I’m saying hello to being a more present woman.  Hello to inspiring the best mother, wife, and friend within me is my goal and choosing that route is inspiring itself!

Tell me about you — how do you inspire the best woman, wife, mother, and friend within you? What ways do you pursue being intentional in your life? Leave me a comment below or on my Instagram. I’d love to hear from you! 

Love, blessings, and coffee, 

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