I see you … you’re drinking Ronald McDonald coffee you smuggled into your little one’s room sitting in the middle of IV alarms, feeding tubes, ventilator equipment, and nurses chattering in the background. You’re spending Christmas in the NICU, PICU, or surgery floor.
I see you smiling at your baby — thankful to be with her even if she’s in a warming tank or you’re wearing those noisy isolation gowns.
Despite your smiles I know you’re struggling with tears and questions — why do we have to spend the holidays here? Why do we have to endure this?
It’s okay; I know that your burden is very real and very heavy.
Can I give you some advice as a woman who spent 281 days in the hospital with her baby?
If baby can tolerate stimuli, I hope you sing her your favorite Christmas carols and dress her in the outfit you got at your baby shower.
Eat the extra cafeteria sugar cookie and take a little time to look at the Christmas lights down the street.
Give your husband an extra long kiss before he goes back to work.
Please buy a tiny Walmart tree and set it up in your Ronald McDonald apartment and enjoy the free gifts they leave hanging on your door.
This is your Christmas.
This horrible, exhausting, lonely Christmas is your Christmas and one day it will end.
One day you’ll look back at this season and wonder how the days passed so quickly.
But until then, be easy on yourself. Find ways to make these precious days count.
You need to survive these days just as much as your baby needs to survive. You need to be gentle with yourself — after all, you’ve lost so much normalcy — it’s okay for you to grieve the loss of normalcy.
As a twenty-eight year old, first time mama, I’m learning a lot about the special relationship between mother and child and one of the most important life lessons I’m currently learning is how to play.
There’s something so beautiful and exciting when you see your child grasp new forms of play. Some of my forever memories will include watching Uriah motion to his favorite song or roar at me when I sneak up close.
Play is not only good for our little’s development but it makes for a happier life. Playing with your babies turns the tired, long, hard days of motherhood into days of joy, laughter, and memories.
Here are 3 of my favorite ways I play with my toddler!
Songs with hand motions
We LOVE singing songs — every morning, I start the day by turning on the bedroom light and singing our favorite morning song. The days are full of music and Uriah sings too! (Which is quite a joy and accomplishment considering most children with trachs cannot make sound).
Some of our favorite hand motioned songs include Itsy, Bitsy Spider, Head And Shoulders, Wheels on the Bus, and Patticake.
Hide and Seek
Even though Uriah isn’t yet walking we have a fabulous time playing hide and seek! I hop down on all fours and crawl around, hiding behind furniture and around corners. Uriah loves looking for mama and the victory of finding me!
Ah, this is the best! We’re starting to enter the more advanced stages of play which include pretending. I love watching Uriah drive his cars or walk his little toy animals across the floor. It really is the best!
A friend recently gave me more ideas for pretend play and they included:
pretending to cook together by stirring, shaking spices, and pouring
So here’s to all of my fellow mamas who choose to take the time to play. And here’s to motherhood — the snot, chores, hugs, late nights, tickles, and life lessons all rolled into a sweet and precious relationship between mother and child. Enjoy!
What are some of your favorite play activities you do with your baby/toddler? What’s your favorite hand motion song? Leave me a comment below! I’d love to hear your thoughts!
In 2016 my water unexpectedly broke at 24 weeks landing us in our local hospital. I spent the next 63 days hoping and praying that I could stay pregnant for as long as possible. Those were long, hard weeks.
Add to the fact that we had been told our son had possible facial anomalies and the fear factor rose a million degrees. I worried — what if my baby has a misshapen nose or only one eye? (These were real issues we dealt with as the ultrasound was unreliable and the diagnosis we received can cause such anomalies). What if my baby is rejected by this world? What if he will be bullied? What if …
That was when God sent this book to my room and began teaching me.
Pumpkin Patch Blessings is written by Kim Washburn and illustrated by Jacqueline East. I love this book because each page has a corresponding Bible verse, gorgeous illustration, and precious fall-themed rhyme.
I cherish this book because it taught me that no matter our physical appearance, disability, or challenge we are just right.
The first time I read Pumpkin Patch Blessings I cried. My worried, weary-worn mama’s heart cried as I read the truest of words:
Some pumpkins are bumpy.
Some are bumpy, bruised, small, or tilted. And some babies areborn differently-abled. Diagnosis’ abound, medical complexities exist, and anomalies are something many face.
But that doesn’t mean they’re not right. Every child, every person, is formed in the image of God. That includes your baby, dear mama, who may have a physical impairment. Your baby with Downs Syndrome or severe eczema or Hydrocephalus. That precious soul hasn’t been forgotten or made by mistake.
They were hand-crafted by a God Who cares beyond what we can even imagine.
He didn’t make a mistake … He just chose to make someone extra unique for His glory. Your baby isn’t forgotten — he’s just right.
I know it’s silly that a child’s book could give me so much hope but it did. It was in that moment that I embraced my child for whoever they would be and however they would be born. So what if my child was born bumpy? We would deal with it. We would love, cherish, and support that little one as they dive into life and find their purpose.
Are you a mama of a kiddo with medical complexities? How have you dealt with the differences you notice? I love hearing from mama’s walking through the same journey! 🙂 I’d love to hear your thoughts!
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 familiesI 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!
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!