Round #2 Your Questions About Down Syndrome Answered

I love October for so many reasons: the need for scarves and boots, the option for pumpkin flavored anything, the changing colors outside, the kind of weather that calls for hot chocolate & smores and cuddles under a blanket.

To add to it all, October is also a month overflowing with awareness:

Pregnancy & Infant Loss Awareness // Sensory Processing Awareness // Spina Bifida Awareness // Breast Cancer Awareness

& my personal and very biased favorite:

National Down Syndrome Awareness Month

To quote Chris Burke, a well-known actor who just so happens to have Down syndrome:

It’s not about celebrating disabilities, it’s about celebrating abilities.

If you search #DownSyndromeAwareness on any social media platform you will find oodles of great information that shows what its like to HAVE someone, KNOW someone, BE someone with DS.

I’d like to do my part in honor of my daughter – so for the month of October I am taking your questions.

ALL of them. The good & the bad. (But NOT the ugly – There are no stupid questions – but there are hurtful ones. If you have something hateful to say, know that your questions/comments will be ignored. Otherwise, I plan to respond to each and every question that I am sent.) 


Here are your previous questions: ROUND 1

{I am still taking your messages – Keep them coming, I’ll be doing this all month long! Send me a direct email by clicking HERE.}

You can also follow us on InstagramFacebook Pinterest for more Down syndrome love. ❤

Read on for some more of your questions answered…

Where
next-


Q: Do you ever wish she didn’t have Down Syndrome and didn’t have to face the challenges she will have? I still have so many worries and fears for my own daughter, especially as her due date draws near.

A: I can tell you without any doubt that I would not wish away the fact that she has Down syndrome.

However, I used to. Especially when I hadn’t met her face-to-face yet. I hadn’t had the chance to be roped in by her personality or my breath taken by her beauty & strength. All I had was a baby in my belly and a diagnosis.

Having a prenatal diagnosis really suited us. We were able to grieve and prepare so I felt more than ready when they finally placed her in my arms. On the flip side, knowing ahead of time gave me more of a chance to fill my head with assumptions and fears (as much as I tried to resist). I would have given anything to take away the struggles that she was (is) going to face.

I thought the problem was the fact that she has Down syndrome. The only solution was to meet my girl & see that it wasn’t.

Now, I can see that the root of the challenges she will face doesn’t lie within her or her extra chromosome. The problem is the outside world & anyone who can look at someone else and immediately see limitations.

Now, I’m not even close to being perfect and I have often bad days where I blame DS for anything and everything. I have to force myself to pause. I realize that right now, our struggles consist of gross motor developmental delays, speech-language, and constipation. Who says that we wouldn’t be concerned with those things if she did not have Down syndrome?

Or when she gets a little older – being the victim of bullying, having problems in math class, not being invited to a sleepover. These are all things that I dealt with as a child and I don’t have Down syndrome.

Even through adulthood – finding a job that doesn’t discriminate, learning a transportation system, pushing for an inclusive college program… People with DS will most definitely struggle throughout life. But don’t we all have our challenges? Wishing away that extra chromosome may eliminate some issues, but it also might bring on others. There is no way to know for sure.

What I do know is that Kara started inching across the floor last week and it sent me over the moon! Kara may have turned a year old in August, but over the past year, its me who’s done the most changing.

❤ Congrats to you – the fact that you’re even worrying about this stuff shows me that you’re going to be a fantastic and protective mother. You will still worry and cry and blame, but your girl will flip your whole world upside down & its going to be amazing. You’re going to experience all of the good that FAR outweighs the bad.


Q: I see that your daughter eats vegetables really well. How do I make my daughter more interested in eating them? 

Yes, Kara loves her veggies. All babies are different and it could be that I got lucky! There’s no one easy fix, but here is my best advice.

If you haven’t already, these are some techniques that I would recommend trying:

  • Different temperatures – Kara only eats her food if its warmed up. Not room temp, not cold, must be warm. She’s a princess.
  • Different textures – You can serve one veggie many ways. Pureed smooth, chunky, diced, in strips. Right now, Kara only likes to feed herself so cutting her foods long ways like fries make it easy for her to eat.
  • Different tastes – This is my favorite and most effective way I get Kara to eat. I add spices and herbs to her meals. Add cinnamon to sweet potato, nutmeg to peppers, basil to carrots, minced garlic to mashed potatoes.

All of these things helps to stimulate the muscles in the mouth so if your child has low muscle tone, it might wake up their sensory system! More than anything, don’t give up. If she doesn’t like something, reintroduce it next month – you might see a change! Just keep experimenting with different combinations of the above and hopefully you’ll hit on something she likes!


Q: I hate to say it, but I feel like I see more white people with Down syndrome – is it more prominent in certain races?

A: Down syndrome certainly does not discriminate. According to the CDC, “The prevalence is similar among all racial groups.” I’ve met & seen people with DS all over the world – girls & boys with red, black, blonde, brunette hair and in all economic classes.


Q: What do you think life looks like for your family when she is 18…20… 30? 

A: This one is hard for many reasons. I am a very sentimental mom. I already miss snuggling my one month old baby so thinking about Kara as an adult is difficult.

It is also hard because I, along with many other families, are pushing for a real change. It is very easy to fall into a black hole when thinking of Kara’s future.

When I think of the future, my mind and my heart tell me two different things.

My mind tells me that the future is scary and pessimistic. I understand that it won’t be easy raising a child with special needs (is any child easy to raise?) My mind tells me that the world is a cruel place – especially to those with special needs. There is a heavy fog of stigma surrounding someone with a disability. In fact, there are people who believe the world is better without people like my baby girl.

I see challenges like these that involve my family & lots of fighting. Not with each other, but FOR each other. For Kara and for those like her. For example, we’ve already started the fight against the proposed Medicaid cuts – something that directly affects Kara’s future. I see us fighting for her to be treated as an equal throughout her college career. I see us fighting insurance companies, doctors’ assumptions and bullies from all angles. I see the possibility of her living with us all her life, meaning financial and emotion burdens. It might put a strain on our marriage or affect our ability to retire.

On the other hand, my heart tells me to breathe deep and fiercely believe that things are changing. Maybe my baby will go off to college when she’s 18 & I lose her to the big, wide world. Or maybe she still lives at home when she turns 21, but her dad and I get to take her out for her first margarita (on the rocks with a little salt, just like her mama). Maybe the concept of inclusion is adopted into every nook & cranny of society and my girl gets to be a part of that?

I see her being a wonderful big sister someday. I see her loving all living things. I see her seizing every opportunity she has to make a difference – making friends with her smiles & enemies with her opinions. I see a community forming around her, supporting her and loving her deeply. I see more and more awareness for Down syndrome where people realize the reality is not what they once thought it was.

I choose to go with my heart. I have to believe that our future is bright. I have to believe that everything I am doing now will continue to make tomorrow even better.

If you want to voice your opinion on the proposed Medicaid cuts – it is VERY easy:

Text RESIST to 50409 & follow the prompts. It will look up your state representatives and send your message directly to them via fax. Tell them to vote for NO CAPS & NO CUTS.  SAVE MEDICAID. 


That’s a wrap for this week. Like I said – keep ’em coming! ❤

Send me a direct email by clicking HERE.

*There are no stupid questions – but there are hurtful ones. If you have something hateful to say, know that I won’t waste one second banning you and your questions/comments will be ignored. Otherwise, I plan to respond to each and every question that I am sent. 

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