I feel certain this was will be the highlight of our Christmas. The girls spent the afternoon shopping for toys for the heart floor at Wolfsons that took such excellent care of KC. They didn’t just grab a few things to be done with it so that they could hurry home to all of AKs new birthday gifts. They spent time very carefully selecting toys that someone could play with from a bed. They chose toys for both boys and girls and no one asked for a single thing for them self. They’ve been begging me since we left the second store to go ahead and deliver the toys now because they are so excited to bring some cheer to a kid not feeling so great right now. My heart is bursting with pride. Not because of anything Ive done though, it’s because of their hearts and the beauty that shines inside of them mixed with their love for their baby sister and the life she has exposed them to. We’ve spent our share of Holidays apart because KCs been in the hospital for one reason or another. As a parent, it always broke my heart for both me and them when I think about what we all missed out on but as the girls get older I can clearly see that those experiences didn’t scar them or negatively affect them. It truly made them stronger. While I was crying over thanksgivings and valentines spent at the hospital away from my people rather than baking yummy treats and creating cute little cards for my girls to pass out at school, they were busy learning that while life doesn’t always go as planned, there’s still a way to be happy and there is always something to be thankful for. They were learning to be sensitive to the fact that not everyone enjoys life in the picture perfect way we see on tv (or that their mom is sometimes guilty of trying to create.) And sometime instead of waiting around for “the good” to show up we have to make a conscious choice to be “the good.” I would obviously love to say that I’ve never spent a holiday away from my precious family but the reality is that it’s happened, it may happen again one day and it’s a current reality for many families in my own community. So, my encouragement comes in saying that while those times were less than ideal, there is no denying that the life lessons these scenarios have taught my family have been some of the most valued lessons of all. Also, A BIG, special THANK YOU to the people working on these days, away from their own families and friends, going out of their way to be The Good! ❤️
I remember when we were pregnant with our first child and I absolutely couldn’t wait to find out the sex of our baby. The anticipation almost got to me before the day finally arrived. I was certain that I’b never been more more anxious before in my life. I was also sure that I would calm down once we knew the answer. Once we finally reached that precious day and learned the sex of our first child, I did calm down…for about 30 seconds. My thoughts then moved to naming our sweet girl and soon after I was obnoxiously impatient to put a face to the name. We spent too much money too see 3D images of our girl which really didn’t give me any better idea of what she’d actually look like. The truth was, like most everyone else, in 40 weeks I had all Of the answered to my long awaited questions about who this mystery person was and then even quicker she had a little personality of her own to go along with it.
The second time around I was equally as excited and impatient to hear the news, boy or girl, and to see our second daughters sweet face but I managed to pass on the the expensive extra images and wait a little more patiently for her entrance to the world.
The third time however, we received additional information with our gender ultra sound, one of those extra pieces included the diagnosis of an extra copy of the 21st chromosome. I whipped out Google faster than I can even say Down syndrome to find out what to expect. I read and read and read over the next few months. It makes sense, you should know what you’re getting into…preparedness, right?
To be clear, I loved her with my whole heart already but After all of my research, I knew exactly what and who I was expecting. I’d spent months reading the same bits of information just reworded a million times; we were having a floppy limbed, flat nosed baby with almond eyes, a protruding tongue, curvy fingers with a straight line across her hand and a tiny little neck. She wouldn’t be able to speak to us very well if at all. She probably wouldn’t walk for a very long time and she would likely be pretty delayed in just about every area imaginable. Right? WRONG! I could list all of the specific ways that KC and many others we now know with that extra awesome chromosome prove that so called research wrong but instead I’ll say this; when I think about what would come up if I googled “what to expect with my typical daughters” the answer is that I’d still have no idea what they’d turn out looking like. I’d still have no idea that one would have beautiful, hazel, almond eyes, an incredible love of learning and an insanely, unimaginable memory. I’d have no way of knowing that our other little girl would be able to make me laugh every time she opened her cute little mouth (especially when she’s supposed to be in trouble) or that her big brown eyes would sparkle back when the mostly girl, princessy dress you’ve ever seen is held up in front her. Just like I would’ve never found on Google that our KCs presence would instantly inspire us or that she’d love baby dolls, tea parties and batman with her whole heart. Or that her sweet little voice would be one of my favorite sounds, especially when she’s standing under my feet in the kitchen singing “guacamole, guacamole.” I had no way of knowing until I met her that her extra chromosome would be the farthest thought in my mind when I look at her contagious smile.
The fact is that You can’t google who your kid is going be, only experiencing them each and every day will show you. I’ve learned that Extra chromosomes or not, they’ll be an amazing little person that rocks your world from the first moment you hold them. They will own you the first time they look into your eyes and you see all of the potential in the face of the incredible, unique features that you and your partner combined to create this amazing little person.
If you’re one of the lucky few that gets a little extra to love, you’ll be honored and humbled by all of the opportunities you have now inherited to prove all of the incorrect, repetitive, biased articles that you come across when you take to google to research this new diagnosis. I wish that the first thing everyone with this diagnosis read was this: Congratulations on your uniquely perfect gift!
Its usually is one of our proudest parent moments, the one where we drive home excessively slow being carful not to jostle new baby and ever mindful of the precious cargo in the back. Then you get the magical moment that you bring the sweet baby home to siblings and begin your new life with your family and heart just a little larger than it was before. Instead we drove home with an empty car seat. The the sounds of my tears drowned out the rain outside. To be clear, I was OVER THE MOON that our baby girl was alive and stable but I already knew the drill from previous experiences and this wasn’t right. You’re not supposed to drive home empty handed without the baby that we’d prayed so hard for who has now been left under the care of complete and total strangers. It had been 5 days since I’d been home where my 2 and 3 year old were. I needed to be home with them. 1/2 of my heart was home but the newest piece that had just broken off was left behind at the hospital in NICU and it was aching.
Over the next 45 days my heart began to ache less. I remember meeting the first nurse our KC had so clearly. She was nearby when I delivered and she was the first face I saw when I finally made it down to the NICU. She smiled every time she looked at KC or talked to us about her. Her happiness for us and our girl was genuine and it was written all over her face. We were so nervous for KC and that nurses joy meant the the world to us. It wasn’t “yay! You guys bought a new car from me. Thanks for the sale and I hope you love it.” It was a joy unlike any other. She wasn’t getting paid extra for being happy with us. There was no customer satisfaction card for us to fill out based on her excitement level. It was a “these are the moments that make a 12 hour shift in a busy NICU worth all the sweat and tears” joy.
A couple days later I came in early to discover a new nurse. I wasn’t comfortable with the change at first but then I noticed she’d actually taken the time to decorate the bed space and KCs protective eye mask. She could’ve used her free time any other way but chose to use it making us all a little more comfortable. Those small things She did helped create the feeling of individuality for our girl. KC wasn’t just another baby in the rows of full bed spaces. She was the girl with the long eyelashes (which hadn’t actually grown in yet!) and the Winnie the Pooh decor.
Every time shift change occurred I cringed yet almost every time someone just as fabulous and caring came in to take over. A night nurse in the first week made pretty cards with KCs footprints on it for her to “send home” to her big sisters. That was the moment that I realized that these nurses weren’t just caring for our fragile baby, they were also extending the same love and care for our whole family.
As time went on and KC improved, we were upgraded to a less intensive area. We were excited for the progress but that meant a whole new set of nurses. Again, I was nervous about the changes and again we were quickly surrounded with a team of amazing nurses and therapists that we felt were genuinely happy to be caring for our girl. We quickly established “our” care team. They always called KC by name. She was no longer “baby girl” or “bed space 215.” They kept me company during the long hours of sitting and waiting for signs of improvement. They convinced us to go out to dinner and just breathe. They reassured us that KC would be just fine despite the tubes and wires and constant dinging noises that haunt you in your sleep when you doze off the noisy reclining chair all while they are busy providing our girl, and others assigned to them, with the best possible care.
They were all so very different but they all worked together with us towards the same goal; graduation.
We met the tidy and always on schedule nurse, the funny nurse, the lets dress that baby up nurse, the be quiet and let her sleep nurse, the lets try something new today and see how she responds nurse, the don’t you worry momma, it’s all going to be ok nurse and most importantly, the lets talk about what this will be like when you’re finally home nurse. The ones willing to talk about the future always brought more hope than they’ll ever know. Even though they were all so different, they all added so much value to KCs care and to the helpfulness of us surviving the divided home. We will forever be thankful to the people that cared for our girl in 12 hour shifts. When we finally got our proud parents moment, they there were there just a few days later to check on their former patient in her newest bed space; home. Ps almost three years later and they haven’t quit checking in on her yet.
Last week the girls and I spent a lot of time at the beach. KC especially loves playing on the beach because she can roam freely while socializing and the sand makes a soft landing for those frequent times that her feet get going too quickly for the rest of her body while she’s busy waving to strangers walking by. One of the days we were there, a woman with four young girls came and sat near us. KC caught the eye of the youngest of their group who quietly stood watching KC play. Although typical for toddler interaction, I couldn’t help but wondered to myself what the little girl was thinking as she observed KC. As KC gets older and more social, I’m curious about when that first interaction will take place that another child asks about KCs differences.
Slowly over time all of our girls, my three and her four, scooted closer and eventually began to interact while playing in a little tide pool. This interaction was different than normal though. I was at a safe distance sitting in the sand but I observed that the two groups of girls were playing silently together. Again, I would expect that from the littlest two from our groups but not the older girls. After a little while, I walked over closer to the group and realized why our girls weren’t speaking to each other. I overheard the mom talking to one of the girls but it was in an entirely different language. I loved how the girls were communicating with each other through their eyes and gestures. I loved that they didn’t feel like they need speak to have fun playing together. I loved that play wasn’t limited to any specific language.
Not that it mattered at all but I decided that it was more likely that the little girl was probably just admiring KCs American-ness. As I stood there watching them play we were all surprised by a huge wave that came far up on shore and into their tide pool. At once, all of the girls squealed at the top of their lungs followed by excessive giggles and laughter. I loved most of all that day the reminder that play and laughter are universal. Those two things transcend any age, language or diagnosis.
I can’t say enough wonderful things about what it means to have companies dedicated to inclusion in advertising. Yes it’s fun to see your kid modeling cute clothes on websites likes zulily but the meaning behind it is what makes me so proud. Yall all know that there was a time when I was still pregnant with KC and we found out that she had an extra 21st chromosome that we were nervous about what that might mean. I wonder if I may have smiled more and feared less in that short time if I pulled up a popular website and saw all these adorable models rocking their beautiful uniqueness. I wonder if the diagnosis would’ve even phased me at all if I grown up seeing television shows and magazines with people of all abilities. I wonder what that time would’ve looked like if I already knew how to celebrate differences in same the way I know now. Thank you Sweet Petunia Clothing for making a point to show off the beauty in diversity.
Check out the Changing The Face of Beauty Campaign to learn more.
1)”You sure have your hands full!”
2)”You’ve got your work cut out for you.”
3)”You guys need to try for that boy next.”
4)”I bet you feel out numbered in that house.” (To daddy)
5)”Oh man. Three? Just wait until they’re all teenagers.”
6)”Three GIRLS!? I sure feel sorry for you.”
7)”I hope you know the bathrooms will never be available again.”
These are some of the typical comments we hear on a very regular basis. If you have a least a couple of your own then you’ve probably heard a few of these too. I’m not hating. I realize most people are attempting to make friendly conversation but I will also add that it’s occasionally difficult to force a smile in return when it’s the 5th “friendly conversation” in a row.
That being said, I’d like to address a few of those comments for those who may still have concerns.
1. Yes, our hands are full and so are our hearts. Seriously though, we do already realize that two hands and three kids equals a “handful”. It’s a most apparent fact when we are navigating through a busy parking lot but for some reason that seems to be the prime time to distract me to point out the obvious. Confession: It kind of makes me want to follow you into the store and occasionally call out obvious facts to you while you’re shopping like “hey, you’ve sure got some brown hair on your head.” Or “Whoa there, that’s a really red shirt you have on today!”
2. Our girls are very much like a full time job… only better because we don’t invest in them for money or fame or power or promotions or extra vacation days. We invest in them because we love them and the return far exceeds all of those things I just named combined. No paycheck or job title beats an “I love you, mom and dad.” An also equally improbably fact, it’s completely acceptable to have our hands full of popsicles, crayons, bubbles, dress up clothes, and dirt all while laughing as loud as you can while “on the clock. “Call it work if you must.
3. A boy would be awesome but was definitely never the goal. Honestly, we used to just hope for healthy kids. KC made us laugh (and cry) a lot for a while there. We are so thankful and blessed beyond measure for good health. But, even on the “unhealthy” days we are able to see that any time at all that we are given with our children is so precious and should be treated as such. Daddy recently bought girls shirts that say Girls Rule and Boys Drool. Our oldest thinks it’s awesome. A brother would’ve totally ruined that moment.
4. I’ve NEVER heard a guy complain about being loved by four girls at the same time. I prefer to assume there is some jealousy hidden in that comment. And I should note that there is ALWAYS a girl on Daddy’s side. It’s typically always the same one but right or wrong, she’s Team Dad.
5. We are blissfully enjoying the days before we are the parents of three teenagers. I mean, DUH!!!
6. I’m going to assume that (a) you don’t have three girls of your own which means (b) I feel sorry for you! So there!!
I know there is always option (c) you do have three girls and you’re still complaining in which case I feel sorry them.
Either way you look at it, you lose!
7. I guess we are thankful that we technically have a 2 1/2 bathroom home but that’s really weird to talk about with a stranger. I’d much prefer you comment about numbers 1-6.
So, I hope this clears things just a little bit and makes you smile a little too. If you’re one of those commenters, carry on. I’m likely to smile but you can now know what I’m probably thinking behind the smile.
After thought; I thought it was pretty neat that the day after I wrote this I read in my Timehop app that two years a woman and her 8-10ish year old daughter approached me at checkout and commented on my full buggy. I can’t remember exactly what she said but I do recall that she was referring to fullness of kids and not groceries. Then she followed it up with “could we please unload your cart for you?”
I hate that I’d forgotten this moment but I vowed to become that type of person. The person whose actions speak louder than her words. ❤️
We saw a specialist right after KC came home from the NICU that had a lot of important things to say but really only one of the things I remember sticking was him telling us to mark down the date that we go the whole day without thinking of KC’s extra chromosome because that would be a “good day” as it meant we were finally starting to see her just like we see anyone else. I’m not sure why that comment keeps replaying in my mind over 2 years late. I couldn’t put my finger on the reason why that didn’t sit well with me. I think I get what he was saying; although I’m still not sure why he felt we needed to be comforted in some way. I think that he just wanted to say there would come a day when Down syndrome wouldn’t be our forethought when we think about our youngest daughter. I’ve thought about it so many times over the last two and a half years. I’ve even tried to figure out how often I actually think about her extra chromosome in a day. I’ve tried to figure out if my typical thoughts now are so different than they were before KC; husband, coffee, messy house, meals, coffee, dishes, laundry, school, coffee, are the kids all dressed and bathed today?
Do the words “Down syndrome” just randomly pop into my head?
What exactly do I think?
Am I somehow subconsciously thinking “oh my KC, how precious, Down syndrome, what time does she need to be at therapy today, you know…for her Down syndrome?”
Surly I don’t think about it everyday? Do I?
But How can I think about not thinking about it without actually thinking about it?!
And if I do think about it, what’s so wrong with that?
Then, I go back to wondering why in the world he made that comment in the first place and why can’t I shake it.
I obviously want inclusion for KC and I want her to always know without a doubt how beautifully she was created. I don’t want someone else to miss out on experiencing the person within her because they can’t look past a diagnosis. So what is my issue with his comment? Isn’t part of my goal with my writings all about wanting others to see her in the same way?
As I’m sitting here looking at pictures for a local OBGYN to hang up in their office with the hope of showing someone the joy that a very surprising diagnosis brought us, it finally occurs to me, I don’t want people to not see that KC’s has down syndrome. I don’t want people to pretend she’s someone else. I don’t want to mask this amazingly unique, small part of who she is. I don’t want people to see her exactly the same way they see everyone else. What I want is for her to be treated exactly the same way as everyone else. Inclusion, for me, is not about treating everyone the same because you see them exactly the same. It’s about learning to treat everyone the same and working together in spite of their differences while learning some wonderful things about each other along the way.
So I say, Mr Specialist, while I don’t spend my days pondering over genes and chromosomes (and trust me, I’d LOVE a good excuse for why I couldn’t finish laundry or the dishes today!) I don’t know that I’ll feel as proud as you may expect the moment I realize that I’ve not pondered over KC’s extra chromosome to some extent. That little bit of extra has managed to teach me and grow me FAR more than I ever imagined and it deserves some serious credit.
When we received KC’s diagnosis we were sad. Not for us so much, we were sad for her because we thought we knew what it meant. We thought it meant she would miss out on things. We thought people may be cruel or say unkind things. We thought she wouldn’t have a full life. We thought she wouldn’t be able to do the things our other two girls have done. We quickly realized we were wrong. We had SO many misconceptions about Down syndrome! We’ve had far more experiences than I could’ve imagined because of KC. People, strangers, always seem to gravitate towards her with smiles and excitement. She lives life to the fullest each day-I know because I chase her! She’s done all of the same things our big girls have done this far. Additionally, she took on open heart surgery like a rock star. Don’t even get me started on this sassy modeling thing she has going on! Down syndrome isn’t anything like we thought it was and I’ve never been more excited to be proven wrong. Just like every other precious life, KC, you are Fearfully and Wonderfully Made!
Today I’m especially excited to share this with you because you can head over to Sweet Petunia Clothing’s Facebook page now for a chance to win one of these amazing shirts and celebrate your fearfully made little love. Shirts are also available for purchase and Sweet Petunia is so generously donating a portion of the proceeds from each shirt sold to benefit the child life department at Wolfson Children’s Hospital that has so lovingly cared for our sweet girl! Be sure to go Like Sweet Petunia’s page and tag a friend to win!!!
I just had to share this sweet moment from our week… Of course there are times that I allow worry and fears to creep in about KCs future. I wonder what kinds of responsibilities, if any, KCs big sisters will assume over her as they get older. I have the ability to let my heart and mind go to some dark places that are completely useless and unnecessary because I get these constant little reminders of what amazing little girls we are blessed with and I get to see the incredible, selfless people that KCs very existence is constantly bringing out in her big sisters. So, KC got her new glasses however she refuses to wear them. BUT, in her defense, they are a terrible, horrible, lousy fit on her. I won’t get into the details of how much I punished myself for allowing this to happen because Daddy already came to the rescue and her new, better (and did I mention sparkly?) glasses are on the way. But in the meantime, we’ve still encouraged KC to try and get comfortable with the ones she has. This week,out of nowhere, our oldest suggests that maybe if we all had glasses KC may do a better job with them. Duh! If her sisters are wearing glasses that makes glasses awesome!! And THAT is the moment that I am reminded that I don’t need to ask them to assume anything over her. I don’t need to let my mind wonder to these dark places. I don’t even have to figure out how to get KC to wear her glasses. I never asked for their help or complained to them about a two year not wanting glasses. They quietly observed the struggle and naturally thought of a solution because they love their little sister and they understand that this is helpful to her. They are 2 steps ahead of me and are ecstatic to be helping their baby sister. They are crazy about this little girl that looks up to them with her whole heart!
This evening we drove out to the outlets to run in a couple stores. We didn’t realize there would be such a crowd and ended up parking far away without a stroller. We took turns between carrying the squirmy toddler and holding hands with the big girls but I ended up wondering off a good ways with all three on my own. Usually it’s no big deal but today it was hot and super crowded and I’m still kicking myself for loving giant purses. I held KC, who was kicking her legs yelling “walk, walk, walk,” over my purse and shopping bag while I held hands with my middle and the oldest held onto my back pocket. Y’all know I love my baby girl and how she fits so perfectly on my hip but in this moment she was toddler KC and I felt like I was melting in the sun while being pulled to the ground by little people. I’ve never been more relieved to see “Dada’s” open arms calling for the big girls to come to him as we turned into the store he was paying in. As KC and I wondered around waiting for him to finish up KC caught the eye of a store clerk and started on her “hiiii” attack. The girl ran right up to us to smile and chat with KC. She started to walk off but stopped and turned back towards up. She said “I’m so sorry, I don’t mean to intrude in any way but, DS [down syndrome]?” I smiled and nodded and she began to jump up and down, cheered and then wrapped her arms around me and KC. Once her excitement calmed down I asked her who she loves with Down syndrome. I spent the next couple minutes listening to her tell me about her amazing 30 year old cousin that she’s been so fortunate to grow up with. She said they are only a month apart and have been close their entire lives and even got to go through school together. The thing that sticks out most was when she told me people often ask, with concern, how her cousin is doing now that she’s an adult. She said that question always makes her laugh “she’s great of course! she’s a happy adult! what else would she be?” My heart was smiling. I went from whining in my head about my “load” to celebrating that very thing that gave that clerk an instant connection to KC. It also reminded me though that there are still too many stereotypes about people with Down syndrome. Why would anyone assume her cousin or our KC any other individual with Down Syndrome would only get to experience the best days of their lives until high school? Why can’t adulthood be just as typical? I loved to think about how that girl was years ahead of me with her experience with Down syndrome and she’s still celebrating (like jumping up and down happy!) the blessing she has from loving someone with an extra chromosome. I like to think about the times that our close friends and family have shared about encountering someone with Down syndrome and how they feel an instant heart connection to them because they now know the joys of loving someone with a chromosomal enhancement. I like to think that this chain of love and acceptance and inclusion will grow and continue for a long time to come and these stereotypes will quickly dissolve. I like to dream about my big girls getting to jump and down and celebrate with a stranger in a store one day that’s holding a baby with Down syndrome because they are genuinely excited for the amazing journey that will continue to unfold before them. Thank you, young lady working in that store for reminding me tonight how blessed I am to be drug to the ground by such amazing little people that I believe are shaping into world changers. And walk on as far as those little feet will carry you, baby girl!