Eyes Like Sapphires

Life with Down Syndrome

Category: Down Syndrome Awareness Month 2017

Down Syndrome Awareness Month: Day 10

We are hyper aware of just how lucky we have been regarding Frankie’s health. But even the healthiest of kids with Down syndrome require extra care in the form of regular doctor and specialist appointments, lots of research on the part of the parents, and especially, therapy.

We are so fortunate that New York City has an excellent and very comprehensive Early Intervention program and because DS is such a cut and dried diagnosis, we have met with little resistance in getting her the services she needs. She was evaluated at 3 weeks old, began therapy at 8 weeks old and currently has 7 sessions of PT, OT and speech therapy, as well as 3 mornings in a preschool type program each week.

There is tons of research to support the benefits of early intervention and Frankie has beyond flourished in the program. So you can imagine the conflict I feel when I admit that sometimes we just get burnt out.

This past summer I was able to condense everything into 3 days each week so we had our Mondays and Fridays free to do what we wanted. We had playdates and went to the beach, we visited Grandma’s and we stayed up late. It was truly the best balance I’ve so far been able to achieve. She learned so much from friends and family, she built strength walking on the sand and the surf tested her balance, hugs and kisses nourished her from the inside out.

Frankie will officially start full-time preschool after she turns 3. My current plan is to have her start next September and to take the summer off from therapy completely. I’m petrified I’m doing the wrong thing but I think this little girl has earned the right to be “just a kid” for just a little while. I really believe there is SO much therapuetic value in every day experiences – or else what’s all the therapy for? Besides I think this beauty can live and learn at the same time.

 

Down Syndrome Awareness Month: Day 9

So, even though we are constantly talking about and advocating for inclusion with Frankie’s typical peers, sometimes it’s amazingly comforting to be around other families that share our experiences with Down syndrome.

I found an incredible source of information, education, friendship and empathy in the online community. I initially found the NYC Down Syndrome Families group on Facebook on a whim while I was searching for local support when Frankie was almost a month old. I was then introduced to the Down Syndrome Diagnosis Network by a fellow Queens mom, which offers small, intimate groups based on your child’s birth year.

I first met the moms of these girls last year. All are in the 2015 DSDN FB group. Even I was surprised at the undeniable connection we all felt literally the minute we met. And when we hugged for the first time, it felt like home. And there are so many more that I haven’t met in person yet that I’m just dying to!

With all of the bad things the internet is blamed for, I can’t help but feel totally indebted to it for giving me a family beyond my flesh and blood. One that understands our unique perspective and one that provides so much information, comraderie and love. I truly believe this generation of children with Down syndrome are destined to lead better lives because their parents are more connected and learning from one another every day.

Down Syndrome Awareness Month: Day 8

While I definitely do see Down Syndrome Awareness Month as a great opportunity to educate my friends, family and community about DS, it’s also a great opportunity for me to learn! Today I was reading a post over on @rubysrainbow on Instagram and I came across this quote from @aliciagraf90 about her teenage daughter Kirsta:

“All of Kirsta’s life we invited kids in to our world. We invited them over for birthday parties and church stuff, Young Life and cast parties…any time we could. So I think because we included them all along the way in our journey. They naturally included her. Inclusion goes both ways.”

WOW…how true is that? Inclusion does go both ways! I like to think we do this quite naturally. This picture is from a playdate we had for Frankie’s 1st birthday. She is literally surrounded by her peers, and now 18 months later they ask for her, want to go to her house, want to be her partner in ballet… I hope with all my heart it will always continue, but this quote made me realize the part I have to play in inclusion too.

Down Syndrome Awareness Month: Day 7

People are always amazed by Frankie’s eyes. They say they’re like the ocean or a starry sky. I like to think they look like sparkly sapphires – my birthstone and favorite gem! I remember being besotted with them the moment I looked into them. I found solace and salvation from all of my fears in their deep blue and that glint hinted at the mischievious little fireball she was to become.

The sparkly effect is due to Brushfield spots, which are actually areas of her eye where the connective tissue has gathered, making the colored iris thinner and thus less blue. Although Brushfields do occur in the typical population, they are much more common in those with Down syndrome. The lighter the eyes the more pronounced the spots will appear.

Down Syndrome Awareness Month: Day 6

Today was a DS Day. It’s what I call those days where Down syndrome is at the forefront of our lives. For the most part I can overlook the daily therapies, the delays, the lack of speech…those things are part of our every day reality. It’s the specialist appointments that get me. They’re a punch in the gut reminder that she’s not “a regular kid”

Fortunately, we don’t have to go too often. Today we had an appointment with a new endocrinologist. He’s mostly checking for thyroid function because kids with DS are susceptible to hypothyroidism. Interestingly, though it’s always gone hand in hand with DS, it’s only fairly recently that it’s being treated as the drugs have gotten better and more readily available. The results have been truly fascinating – not only are those patients able to better control their weight, they are also seeing more steady growth patterns and an increase in cognitive ability.

We are not particularly concerned with Frankie’s thyroid right now, but it’s important to check once or twice a year. We also did a CBC to make sure she’s as healthy as she can be – children with Down syndrome are also at greater risk of Leukemia. Again, not of particular concern for us right now but important to have regular checks.

Now we wait the nervewracking week for the results…the Wonder Woman bandaid helps.

Down Syndrome Awareness Month: Day 5

Monkey see, monkey do…🙈
We have to be verrrry careful around this little one lately. She is a great imitator and will copy nearly everything we do, down to the littlest detail.

This morning she insisted on walking the mile to the playground. When I stopped to look at my phone to give her some time to catch up, I turned around to find this…

BTW, the water bottle dangling from her handle bars was deemed an ok substitute for Mommy’s coffee and cup holder.

 

Down Syndrome Awareness Month: Day 4

Last week, Frankie and I were walking down the street when she stopped. She saw a crispy brown leaf and she stomped on it, squarely and deliberately. She was clearly delighted by the audible crunch.

A woman was approaching from the opposite direction. A huge smile spread across her face as she passed by us and said “Smart!” It wasn’t something I would’ve considered “smart” for a 2.5 year old. Funny? Silly? Maybe. Beastly? Probably! But this woman made me look at it differently.

There was no way she could’ve seen Frankie’s face through her curtain of blond hair and I bet she didn’t know she has an intellectual disability. She simply watched a toddler exploring her world, testing principals of cause and effect, experiencing her own moment of joy in completing the simplest of tasks.

When Frankie looked up she was beaming and it got me. It is *always* amazing to watch someone learning, to watch your child “figure it out” or to watch them reach that next level. No matter her age, no matter the milestone. I am proud of her every day.

Down Syndrome Awareness Month: Day 3

I had something completely different prepared for today’s post but then this, originally posted 3 years ago today, showed up in my timehop with the caption “20 weeks and all is well!”

When Frankie was tiny we got a lot of questions. “Didn’t you *know*?” people would ask incredulously. No. We didn’t. Nasal bone was present, nuchal fold was in range, limbs were proportional. There were no red flags, no markers, no indications. I used to wonder What if the sono equipment had been a little bit better? Or what if the technician was a little bit keener? Would that have made a difference? Would we have known?

But that opens a whole other can of worms. What would we have done with that information? What decision would we make if we were counseled on all of the things she wouldn’t do instead of what she could? If we were told about all of the complications without any of the insights? If we were led to believe there would only be lows but no highs?

Personally I am glad that decision was taken out of my hands. But many families do have that information and must make that decision. And I truly believe it is theirs to make. But that is exactly why I share so much of Frankie – because she and so many others like her are the CAN to the CAN’T and the BEAUTY to the UGLY and the JOY to the DESPAIR. She is not scary or broken or less than. She is just a perfect little person.

Down Syndrome Awareness Month: Day 2

Curiouser…and curiouser… Frankie is a very naturally curious little girl. Her curiousity serves her really well. It provides motivation to stretch herself physically, it helps her to understand cause and effect in a variety of ways and different sensory experiences stimulate her entire body.

Down Syndrome Awareness Month: Day 1

Hello! Remember us?

You might be aware that October is Down syndrome awareness month.

I am hoping to post something every day that will give you some insight into what life is like with a child with DS. Basically, it wont be all that different from what I do anyway over on my personal Facebook page, but I hope that at the end of the month you’ll all take a second to look back at #amonthinthelife and it will reaffirm what I’m always going on about – that Frankie is more alike than different!

I will also be throwing out some fun facts about Down syndrome and maybe a blog post or two (I make NO promises). But I also want to invite any questions you might have about D’S that you’d like us to have a crack at answering for you. Please fire away!

So, until tomorrow…! I leave you with Miss F’s formidable first attempt at ping pong…

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