“I’ve had a hard time writing this. It opens the doors to a new journey we are on. One we didn’t choose, but was lovingly chosen for us. One that is still a bit shocking to us and I’m sure will be to you, too. But one that will turn out to be the biggest love story our family has ever told.
Our sweet baby Louie was born very special. He has a ‘condition.’ When God was forming him in the secret place, He saw fit to make Louie different than most. He divinely selected Louie at conception to have Achondroplasia, the most common form of dwarfism. Louie is a little person. To say we were shocked, overwhelmed, even heart-broken at 35 weeks when we found out this probable diagnosis, is an understatement. We are thankful we had time to process and prepare before his birth so tears could be transformed into joy and deeper love. The formality of confirmation through genetic testing came just 3 weeks ago.
So, we are on a new path, one that we never dreamed we would be on, but one that was always going to be chosen for us. There is much we don’t understand, but we love this sweet boy so much, and we are up to the task of raising him how God created him to be. Our God doesn’t make mistakes. I’m confident the gift of Louie will change us and the world in big ways. 2 big brothers and 2 big sisters were specifically chosen to love and protect this sweet boy and I’m excited see the impact it has on them. Their character will be shaped in ways it wouldn’t have been if not for Louie. He has a special purpose in life, we can already feel it.
That’s not where the story started, but in a large part that’s when the idea started to grow. Maybe I really could make a difference in the world for my son with a super rare condition? Now, to the very beginning…
We always wanted a big family. Our first four kiddos were all very close in age. When the 4th was about to turn three, we thought we might want one more. We decided to try for only two months, letting that be the deciding factor on if we were meant to have one more or not. We had our 4 perfectly healthy kids and we didn’t want to take too much a chance of having a kiddo with ‘something wrong.’ I cringe thinking of that thought now.
At the end of the second month, I had taken a couple pregnancy tests a few days early. They were all negative, and I thought for sure that meant no baby. I remember standing in my bathroom and throwing away the negative test saying to God, ‘Well Lord, if you want us to have a 5th baby you are going to have to just put him/her in there on your own.’ I was truly at peace with not trying anymore, but we were willing and would still accept a precious kiddo if it came to be.
A few days later, my sister said, ‘Why don’t you take one more just to be sure?’ I fought her for a bit but eventually did. I couldn’t believe it when I saw a faint line! I quickly drove to the store to get another test. This time the line was not so faint. We couldn’t believe it, and even to this day I think about my short little prayer and take confidence in knowing Louie is no mistake. Perfectly planned and purposefully chosen for our family.
My pregnancy was just like the previous ones. Our 4 kiddos were over the moon excited. We found out #5 was a boy and were thrilled. We called him our tie breaker. Our first two kids are boys and the second two are girls. I remember going in for the 20-week ultrasound a little nervous because everyone knows this is the big ultrasound where you would find out if something wasn’t right. At the end of the appointment, the ultrasound doctor came in and said, ‘Everyting looks great, but I just want to remind you that just because everything looks great now doesn’t mean I can guarantee you nothing will come up.’ I kind of thought that was strange and uneccessary as no other docs had said that to me before. But I left knowing everything was great and believing we were out of the woods.
The next few months flew by. We had no name for little man so we lovingly resorted to calling him Cinco or Number 5. Around 34 weeks, I was measuring a little big, so we decided to see just how big little man was by having an ultrasound. My husband came with me to get one last peek of Cinco while in utero. Our ultrasound tech, who we loved, said, ‘I think this might just be your biggest baby!’ It’s rather ironic looking back now.
From what I could tell, everything looked great and I sent my hubby back to pick up the other kids from school as he didn’t need to stay for the actual appointment part. I remember hitting ‘publish’ on a Facebook post in May of 2018 with his newest ultrasound pic seconds before my doctor walked in. ‘So, we need to talk about some things with the baby…’ What?! I just saw him, he’s big and plump and perfect. ‘His legs are measuring very small, in the 1st percentile while his head and torso are measuring over the 97th percentile. It could just be an off measurement, but we’d like to send you to a specialist to do another ultrasound to make sure. They will be calling to get you in within the next week.’
I couldn’t think of anything to ask as I was so shocked. I walked out of the room and called my husband. ‘Babe, I think something might be wrong with the baby.’ He thought I was joking until he could hear the anxiousness in my voice. I had no details to share with him. Just shock. Tears streamed down my face as I drove home. I just couldn’t believe it. What could we even be talking about? He measured completely normal at 20 weeks. I could definitely feel him kicking me all over the place. The more I thought about it over the next few days, the more I convinced myself it was probably just an off measurement. I was probably in somewhat of denial yet also was just choosing positivity. I even had a small baby shower that weekend, and I remember everyone else being worried for my baby boy and me thinking, guys this isn’t that big of a deal. It will all be fine.
So, a week later we found ourselves at the specialist to get the relieving, long-awaited news that our baby boy was ‘normal.’ The tech started measuring everything, we sat in pure silence watching for any indication of anything at all. She focused on his head, legs, arms, pinkie finger, ribs, chest. While she was looking, I had a feeling. Something rang a bell when she started focusing on his chest and his pinkie. I tried to pretend they weren’t focusing on it, and that it was just routine. But I knew. I knew it wasn’t. She left and said the doctor would be in shortly. I don’t even think we acknowledged what we were there for in those several minutes. I think we knew it was the last few moments of our ‘normal’ life. (Whatever that meant, anyway.)
The doctor came in, and immediately started off with, ‘Ohhhhh, I was hoping to walk in and see that you two were just very short, but I see that isn’t the case. Have you ever seen the little people shows on TV?’ Ummmm, what the heck does that have to do with our conversation??….’I believe your son might have achondroplasia, which is the condition those people have as well. Is there any of that in your family?’ Ummmm no. (Most of the doctors don’t even know it isn’t generally inherited.)
‘Well, the good news is these kids and people lead normal lives and are typically very healthy.’ I’m pretty sure we just didn’t believe him. As he double checked measurements and brought further proof to our attention, we realized he was actually serious. He wasn’t just half-guessing, he was convinced this is what was going on. I don’t think either of us even knew how to react as he kept talking. I don’t remember much of what he said other than, ‘Oh yes, look at his hand, his chubby little fingers that look like a starfish…this is a definite marker.’
He scooted the Kleenex box over towards us, but we were in shock. He offered some testing to verify, but our little guy would be here before the testing would come back.
We got up to leave and to begin scheduling appointments with genetics, neonatal team, more ultrasounds to monitor growth. It was all so overwhelming. Just like that, my completely ‘normal’ pregnancy was anything but normal. It hit me there in the hallway waiting to check out, I just lost it. A nurse came and took us to a room so we could have a few minutes to breathe. I vividly remember sitting down and, through tears, saying to Brad, ‘I know that if this is true, God chose this for us and for our baby, but it’s so hard.’ Almost without me finishing, he echoed the same thing back. We both felt it deep down, we were chosen, Louie was chosen. It didn’t make it easy, it didn’t explain the why, but it did mean this was no mistake. This baby’s life was divinely selected to be ‘not-normal.’ And that’s the hard and beautiful part all together!
The fears were real. ‘What will all of our friends think? Will they love him the same as they love our other kids? Will he get invited to do things as a middle schooler and high schooler? What will he look like? Is everyone going to be able to tell the second he is born? How will we tell our bigger kids? How will we tell the world?’ We left and had about a month to prepare for this little world changer to completely change our world.
March 9, 2018 Louie David entered the world via c-section. We held our breath, we looked at him, we loved him. He was perfect. At first, we couldn’t tell anything was different. Maybe they had been wrong? But then, we saw them. His perfectly different, little starfish hands.
Over the course of the next weeks, these hands were the stark reminder that our little guy probably had some pretty big differences. They brought to mind fears and worries and maybe even some tears. We got the official diagnosis of achondroplasia when Louie was 6 weeks old. We had prepared ourselves well and knew it was most likely coming. Then began the millions of appointments. Babies with dwarfism are prone to many different health issues. In addition to our normal pediatrcian, we see a geneticist, orthopedist, pulmonologist, neurologist, and ENT.
We have been so blessed with very few medical issues regarding his condition, but it doesn’t come without lots of different procedures just to make sure. Blood draws, MRI’s, general anesthisia, sleep studies, x-rays, tubes, and countless physical exams. It wasn’t until after we named Louie that we learned his name means ‘warrior.’ And what a warrior he has been!
His determination and joy radiate every single day. Babies with dwarfism have low muscle tone, which makes hitting the typical motor milestones a lot harder and a little delayed. This boy, having 4 big siblings to keep up with, laughed at the word ‘delay.’ He had to work extra hard but he has hit milestones quicker than expected. We just checked off his last huge milestone of walking last month at 18 months! The joy and excitement from his siblings made my heart explode. We are so proud of him.
Being a year and a half in, now I look at his precious hands and they are a stark reminder of God’s perfect creation of our sweet boy. They help blow the best kisses, give the sweetest ‘starfish’ high-five, and are the perfect wrap around our fingers.
20 months ago, I stared at an ultrasound picture of a little boy who I hadn’t met yet, wondering how I could possibly be okay with this news of dwarfism, straining to see what the doctors were certain was there. If I could only go back, I would tell myself this:
‘It will be okay. In fact, it will be better than okay. It will be precious, life-giving, beautiful, and heart-melting. You’re about to meet the most adorable baby who God specifically and intricately crafted to display his glory perfectly in your family. The differences you are straining to see now will almost disappear before your eyes when you look at your 19-month-old boy. This was always going to be. There was never another way. Yes, the journey might be different than most. But guess what? This changes NOTHING.'”
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This story was submitted to Love What Matters by Alicia Munson of Houston, Texas. You can follow her journey on Facebook and Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.
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‘There’s something wrong with her!’ My mom looked at my triangular-shaped face.’: Woman with rare form of Dwarfism defies ‘grim’ life expectancy, ‘never gave up’
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