Eyes Like Sapphires

Life with Down Syndrome

Author: Farah Page 1 of 5

A Crystal Ball

I want to know how this is going to go…

Despite what I know to be true, despite everything I tell other people when they are getting ahead of themselves, despite how I say one of the greatest gifts of Down syndrome is learning to live in the moment – this thought still crosses my mind some times.

I know I can’t know. That there are a million and one scenarios that are possible. That if I’m really honest, my typical son’s future is as uncertain as my daughter’s. That the unknown is actually quite fun when you get the hang of it. And that frankly, I know that that’s life. But I still have those moments where I wish I had a crystal ball to be able to see what she’s going to be like when she grows up.

Maybe I just want some reassurance that everything is going to be okay? I want to know that in the end all these conversations about school placement and worries about speech and sleepless nights over cognitive development and all of these Am I doing enough? moments were all worth it. I want to know that it wasn’t all for naught, that in the end it all mattered.

But you know what? No one can know what results their decisions in life will yield. Will Frankie have a better future or be more successful based on any of these decisions I’m making for her now? It’s hard to imagine anything I am doing will have such an impact, and that’s why this parenting thing is so difficult. But you do what you can with your best intentions and the information you have. You close your eyes and take a deep breath and step on the gas.

I’m not a religious person but Down syndrome has taught me about faith. It’s not a religion or spiritual faith. It’s not a belief that a higher being is going to make everything okay. It’s a faith in love. It’s being content that no matter who your child turns out to be, he or she is YOUR child, the same child that you love now and will love then. It’s the knowledge that when he or she falls short of milestones, the love will take over. But it’s not a “That’s okay, I still love you anyway” thing. It’s not an overcompensating love. It’s an all encompassing love.

And that makes me realize that I do, in fact, know exactly how this is going to go…

World Down Syndrome Day 2018: More Alike Than Different

Just a little something we whipped up for World Down Syndrome Day! Love these kiddos!

How Do I Love Her – Video Version

A mom friend and fellow blogger flagged up this website to me that allows you to turn your blog posts into videos. I gave it a try with this post that I had written for World Down Syndrome Day last year and really loved the way it came out. It got great response on my Facebook page and I’ve been asked to post it here. So here it is….! How Do I Love Her? Just like you love your kids

#morealikethandifferent

Down Syndrome Awareness Month: Day 29

I’ve said before that I do not look too far into the future where Frankie is concerned. Try not to might be a more accurate way to put it. I don’t usually go hunting for the stories of adults with Down syndrome doing amazing things, but sometimes they just fall into my lap (thank you social media!) and I feel compelled to share and shout about them.

The original video that I saw was a few years old, but it showed a well spoken young woman named Bryann Burgess. She was then a student at University of South Carolina’s LIFE program and a certified Kindermusik teacher. I was so impressed, I googled some more and found she has since graduated from USC and is a wonderful piano and guitar player. She is just all around awesome.

Do I think Frankie is going to be a musician? Probably not…we’re not particularly musical in this house… But I kind of feel like, with a typical child, you start off with a whole realm of possibilities of what your kid can grow up to be and you cross things off as you go along and your child’s talents and interests develop. With a child with Down syndrome, I’ve found it to be the opposite. Many of us parents didn’t know all that much when we first got that diagnosis, so we started off from a place where stereotypes dictate what we believe; stereotypes which include a lot of can’ts and nevers.

Now, as I come across young adults soaring at all sorts of careers, I kind of collect their stories and file them away as “possible” and “maybe.” As she grows and as we learn, that file is expanding all the time! The future is bright!

Down Syndrome Awareness Month: Day 28

In the weeks following Frankie’s birth I had a series of encounters that gave me such peace and made me realize everything was going to be alright.

One such encounter was with the woman who evaluated Frankie for Early Intervention services. We had an instant connection as she told me, with tears in her eyes, about her own baby that had died from a broken neck during child birth. A baby that also had Down syndrome. She spent much more than her allotted time with us and when she left, I couldn’t help but hug her when she assured me that Frankie would be amazing.

A few weeks later, Frankie rolled over all on her own at 1 month old. I excitedly texted Sylvia to let her know her prediction was already coming true! She wrote back and sent me a picture of a teenage girl with Down syndrome she had been mentoring. She had just passed her driver’s test. “The sky’s the limit!” she wrote. And for the first time since Frankie was born I believed it.

I wish she could see our girl now.

Down Syndrome Awareness Month: Day 27

About half of all children with Down syndrome are born with a congenital heart defect. Most common are holes between the chambers which can range from mild to severe. Symptoms include heart failure, difficulty breathing and failure to thrive in the newborn period.

Heart surgery is often recommended before the age of 5-6 months in order to prevent lung damage, though some babies have a difficult time putting on enough weight for the surgery because of the CHD. By all accounts it is the scariest experience in the world to hand your baby over for open heart surgery, especially when their heart is about the size of a walnut, but thankfully the procedure success rates hover around 99%.

Frankie was born with a very tiny Atrioventricular Septal Defect – a small hole between the top two chambers of her heart. According to her cardiologist most everyone has this in utero but it usually closes by the time a baby is born. Sometimes it doesn’t, even in the typical population. Frankie’s ASD was seen at her first echocardiogram at 3 weeks old and we’ve been keeping an eye on it ever since. This morning’s exam showed it still hasn’t closed but the doctor said it’s so tiny it doesn’t require any intervention. He also said that if we’re curious we could come back to have it checked out in a year or two…

Um, no thanks! Because holding your toddler down for an echo is about as fun as wrestling an alligator! But it’s worth it because we are now cleared from cardio!!!

Down Syndrome Awareness Month: Day 26

Here’s a scary statistic for you – virtually 100% of people with Down syndrome will develop the pathology of Alzheimer’s in their brains by the age of 40.

Studies show that one the main genes on the 21st chromosome (which people with DS have in triplicate) controls the production of amyloid, the substance that forms the sticky plaques associated with Alzheimer’s. The overexpression of the 21st chromosome means that people with DS are the largest group of people predisposed to Alzheimer’s. The silver lining is that this makes them perfect candidates for research into the disease which also sheds light on how the brains of people with DS work.

Discoveries being made and drugs being developed are super encouraging that we are on the path to a cure. A cure that will undoubtedly benefit the lives of those with DS as well.

Downsyndromeawareness #dsam2017 #Alzheimers #downsyndrome #rocktober #rockthe21 #t21 #trisomy21 #lifewithds #morealikethandifferent #theluckyfew #nothingdownaboutit #lifeisbetterwithyou

Down Syndrome Awareness Month: Day 25

Frankie was a Daddy’s Girl from her first day on this Earth. She will do things for him that she will not even entertain for me (like poop on the potty! Twice!). Among her first words was a breathy, coy “Dada!” and her blue eyes sparkle just a little more when he’s around.

And the feeling is mutual. He is definitely not a warm and fuzzy guy, but he visibly melts when she runs to him. I have seen his edges soften since she was born. Even other people have noticed that he’s a real softie on anything pertaining to Frankie but he’s not a pushover either. He gives her just the right amount of support to ensure that her accomplishments are her own.

His reaction to her diagnosis was unflinching, total acceptance. He never once doubted that she would be the star that she is and he was my rock through the early dark days.

I sometimes actually feel a little jealous of their relationship since losing my own Dad in January, but I’m so grateful that they have such a special bond. She already knows how special Daddies are.

If she could talk today, I’m sure she would say:

“Happy birthday, Daddy! Ah wuv oo”

Down Syndrome Awareness Month: Day 24

Down syndrome has made my life easier. I know that sounds weird. Let me try to explain.

Before Frankie, I spent a lot of time and mental energy worrying we didn’t own a home, we didn’t make enough money, maybe I wasn’t ambitious enough etc, etc. I called it “planning” but I was preoccupied with the future so much so that I was very rarely satisfied with where we were now.

After her diagnosis I went into full research mode in order to get an idea of just what our new future was going to look like. But it was useless. There were so many variables. I thought to myself, well, she’s completely healthy so that has to mean she’ll grow up to go to school, live independently and have a great job. But, I found that wasn’t a predictor of anything – I encountered kids and adults of all levels of functionality regardless of their health status. I struggled to find other indications of what our life would be like. Finally one evening I was researching college programs for kids with special needs. “She could go here!” I excitedly told Seb. “Are you worried about where Tristan is going to go to college?” he asked reproachfully. “Well, no,” I admitted. “Then why are you making yourself crazy worrying about her?” he said.

Something clicked then. I realized I couldn’t possibly know what her life was going to look like and that that wasn’t necessarily a bad thing. Because the future was beyond our sights, I had no option but to focus on the present, to take each day as it came. As a result, I have become more content with our lives in general. We still have goals, but they are more immediate and more attainable and the future seems less daunting, smaller, quieter. I am more thankful for what we do have and have achieved instead of worrying about all we don’t have or haven’t done.

I used to think that feeling like this would be settling. A cop out. But it’s not. It’s so much better than before. This is what families of children with DS mean when they say their child changed them for the better.

Down Syndrome Awareness Month: Day 23

As a mom, I spend more time and care over the appearance of my child with Down syndrome than I did with my typical son. First impressions count. That’s a fact.

I hate vocalizing that. It makes me feel shallow and discriminatory. But a discussion with other moms of kids with DS proved that I was not alone. We take more care and spend more money choosing clothes, we wipe little noses more often so that they’re free from boogers, we battle fidget monsters to make sure hair is done, teeth are brushed and faces are washed.

We feel that we are fighting against the stereotype of a disability that is written all over their little faces. One that only a generation ago would’ve landed them in an institution where they were often neglected, uncared for and unloved.

Making sure they look well cared for feels like a statement of their worth. It says “Look at me. I am important. I am a person. I am loved. Maybe you can love me, too.” Most of us are ashamed we feel this way, but, on the other hand, we’re super proud of all of these little babies with DS looking adorable and challenging perceptions. It’s complicated.

At any rate, mom guilt aside, I hope that fostering good hygeine habits and a pride in her appearance will serve her well in the future. She’s already got a killer sense of style!

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