This afternoon as the clock flipped over to 1:53pm, I lay curled around you in bed watching you sleep. Your eyes fluttered, your mouth was open in a half smile, fine hair floating out in all directions. I breathed you in – you utterly content with a belly full of milk and me utterly content with my arms full of you. Perfect, marvelous, wonderful you.
It’s been a year since we first met. Blink. A year. Blink blink blink. Where did it go? Yes, the year but also my fear. The uncertainties. The overwhelm. Where did it all go? I’ve gone back and read On the Night You Were Born a number of times now and I can barely relate. I want to reach back in time and hug the woman who wrote it tight. To whisper in her ear that everything is going to be just fine. She wouldn’t have believed me but I would tell her fervently that a year from now, you will find it hard to conjure up the grief. The intense sadness will be replaced with a love so strong that you want to yell it from the mountain tops. Everything will be okay.
In the beginning, I thought about Izzy’s Down syndrome 24-7. There was not a moment that passed that it wasn’t on my mind. I had a permanent Down syndrome thought bubble above my head. When we were in public I had the strangest urge to blurt it out to anyone who even glanced her way. It felt like such a Big Deal that it was all I could think about. I went to bed and woke up thinking about it. I oscillated wildly between acceptance and despair. Down syndrome, Down syndrome, Down syndrome. All the time.
But as time marched on, the thought bubble started to dissipate. Perhaps I grew accustomed to the idea or more likely, it was because other than Izzy being diagnosed with Down syndrome, Down syndrome essentially played no role in our day to day lives. Izzy was growing into a happy, smiling, engaged baby. She was eating, pooping, rolling, grabbing, smiling and doing everything a baby is supposed to do. Then one day I realized that I hadn’t thought about Down Syndrome in a few hours. Then a few days. Then all of a sudden the scale tipped and the thought bubble popped. Now I have to remind myself. Oh yeah, she has Down syndrome. [Continued in comments 👇]
Charlie bear ❤, Mi niño hermoso, I'm blessed and thankful for you. #dsdn #theluckyfew
Not where I hoped to be today...but I am so grateful for doctors and nurses that are on top of things and take Aviyah’s well-being seriously. We are in the hospital for at least a night as she has dropped weight quickly, is not taking in a lot of fluid, and is febrile. She is charming everyone and I’m grateful she looks so good. I am also grateful that these doctors are being so proactive so we don’t find ourselves in a spot where it’s much harder to come back from. So Aviyah and I will have some mother daughter time in the hospital tonight and hopefully she just gets even better ❤️ thank you for the prayers for my sweet girl and her warrior heart❤️ .
#mom #momma #momlife #babygirl #aviyahgrace #avigahswarriorheart #dsdn #downsyndromelove #downsyndromeawareness
She makes even the darkest days bright. I can't imagine what I was ever so afraid of when it came to the differently-abled. If I knew the magic that they have inside of them to make us see the joy in the unexpected and the light in the darkness I would have never feared them and gravitated towards them. God gave me Ivette so I can finally see the world as the miraculous thing that it is instead of the sorrowful hole that I thought it was. #dsdn #nothingdownaboutit #theluckyfew #trisomy21 #ivetteinspires #downsyndrome #extrachromosome #downsyndromelove
To this amazing little girl who made me a mommy. I look at you and at times am flooded with so many emotions. I get so excited thinking about your future and I'm so proud of all these amazing fun things you are doing. Watching your personality develop has probably been one of my favorite things! Your curiosity will take you on many adventures and your determination will take you to many places. I think about some of the challenges that you have overcome and know that one day you will move mountains!
On a side note... Please tell me I am not the only one who takes a bunch of random pictures of their child sleeping!?! When I watch her sleep my mind wanders to all these amazing things, what do you think of?
Last night in the tub Lindie was all over the place. Crawling to the other side. Putting her face in the water. Playing with her toys. Trying to pull up to stand. I kept wondering where my baby was, all while trying to keep her from drowning or pulling out her g-tube in her excitement. 😆
After a long season of what has felt like slowness, it seems like Lindie is in a new season developmentally. She’s hitting more “milestones” and doing a lot of new things. It’s exciting .
That being said, I’ve also appreciated the slowness. At first it was really hard for me to see Lindie’s peers pass her developmentally, those typically developing and those with Down syndrome alike. But as that slow season drug out it also helped me appreciate Lindie more— her laidback personality, her ease with things, her taking her time with things, her being my baby longer and letting time linger. And really, it has become a joy! .
Don’t get me wrong— I’m excited for her and all the new discoveries she’s making. I guess I’m just learning the art of being content with both and want to encourage other mamas currently sitting in that slow season to snuggle up and enjoy it. Because, like our other typically developing children, our children with Down syndrome grow up too. So enjoy every second. 🥰💗 .
#theluckyfew #downsyndrome #upsyndrome #changingthefaceofbeauty #downrightperfect #downsyndromelove #morealikethandifferent #nothingdownaboutit #motherhoodrising #motherhood #motherhoodunplugged #joyfulmamas #picoftheday #documentyourdays #inbeautyandchaos #thehappynow #dsdn #lifeisbetterwithyou #trisomy21
Mosaic Down syndrome. People with Mosaic Down syndrome have a mixture of cells. Some have two copies of chromosome 21, and some have three.
This is a rare form of Down syndrome that occurs in 2% of all Down syndrome cases.
The more you know!
Happy fourth birthday to the best thing that is ever happened to me! I am so proud of the little boy that you have become and so thankful that I get to watch you grow and blossom and challenge yourself every single day. You made me a mom and I am forever grateful for that. Happy birthday my nugget!
These little hands are my favorite. The cute little fingers. And that crease.
It’s called a Palmar crease. A single transverse palmar crease is one of the soft markers for Down syndrome. That crease is one of the markers our midwives noticed when Jonny was born.
That crease is my favorite. 🖤
I’m not sure if it was more exciting taking Cooper to pick out his first Christmas tree or that a pair of his shoes finally fit his tiny lil feet ✨ Grow baby, grow!
Gigi’s first birthday party was awesome 🦖
These two have changed our lives so drastically 💛 In such an amazing way . These two have changed me for the better in so many ways . I have learned so much from them and love my little journey. In life with then 💙 I love you both 💙💛 #aunt #nephew #downsyndromelove
Wanted to share this with you ! “Do not label me “
Please do not limit me
You CAN NOT predict who I will grow to be
I am just as determined to succeed
As the kid who is sitting next to me
I may look different, but don’t we all
Everyone is different both big and small
Please do not label me
My life and ability is not to be preconceived
I can grow up and be ANYTHING
What gives society the right to tell me differently?
When I grow big you will see, I will be amazing at everything!
I work so hard, I try new things.. I won’t sit back and let misconception take the lead
Although I have yet to sit or crawl
When I get there, I will show it off
With that big smile on my face
I meet my milestones at my own pace !
Yes I conquer, yes I fall
I may have struggles
But best of all, my ear to ear smile says it all
I overcome them everyday
I am happy to be living my life, my way
The obstacles hardest thrown at me
Are the ones from others being mean
You can help me live life happily
Just teach your kids to be kind & accepting
We can all change the world for the better, let’s join forces and do it together !
It’s Views and stigmas are so out dated.
We are more alike than different let’s
celebrate it !
Take a second to contemplate... the world can really become SO great
Here’s a challenge let’s start with you,
Pass this along and see what it will do... -Kelly Monroe Hernandez -IG: @babybottles.and.bigboybikes