Special Needs Spotlight || Alice

My name is Ann. I’m 33 years old and I live in Cincinnati, Ohio with my husband Tim, our daughter Lucy (3) and our other daughter Alice (just turned 1). Alice has Down syndrome! We had a birth diagnosis for her. We didn’t know ANYTHING about Down syndrome when she was born, so the first few weeks were overwhelming to say the least. However, since then, we have learned just how blessed we are to have her! She’s simply the best.

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Miggy: Hello Ann and welcome! I’m so excited to talk about your sweet girl Alice who has Down syndrome. Can you take me back to the day you found out she would have Down syndrome? Was it before birth or shortly thereafter? Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Ann: Alice was born on St. Patrick’s Day 2018… one week before her due date.  (I went into labor while walking around the mall with my other daughter Lucy!) The second I saw her, I fell in love with her! She was just so beautiful. A few hours after she was born, a doctor told me that Alice had characteristics of Down syndrome. My husband and I were in complete shock. I remember everything about how I felt. I was shocked. Devastated. Heartbroken. Completely and utterly hopeless. I felt like someone told me my entire family had just died. I was in denial and I just thought this couldn’t be happening. I didn’t know one thing about Down syndrome. I had never known anyone with it. I thought it was extremely rare… like one in a million. I had never heard anything about it… and definitely not anything good about it. I couldn’t believe this was happening and I just remember crying and shaking in my hospital bed, praying that the doctors were wrong.

Comparing those feelings to how I feel now is like night and day. Now… I love that Alice has Down syndrome. I love to show her off every chance I get. I’m so incredibly proud of her, and I’m so completely honored to be chosen as her mom. I look back at my initial reaction and I just think how little I knew at the time. If I knew then what I know now, I wouldn’t have shed one single tear (unless it was a happy tear).

Miggy: Like most disabilities Down syndrome exists on a spectrum. Can you tell us a little about Alice and what Down syndrome looks like for her?

Ann: Down syndrome is definitely a spectrum. With Alice, I forget that she has Down syndrome most of the time. We are very fortunate because Alice does not have any of the health problems that can come along with DS. She has no heart problems, no hearing problems, no thyroid problems, no health problems whatsoever.

In addition, Alice is very strong physically. Although every baby with Down syndrome has at least a mild degree of hypotonia (low muscle tone), Alice is generally very strong. She sits up great on her own and she’s learning to crawl.

So far, her Down syndrome is very “mild.” All of her doctors are very impressed by her!
Miggy: What are the biggest worries you face for your daughter? On the flip side, what are your hopes and dreams for her?

Ann: The biggest worry I have for Alice is that people won’t know how to act around her or that they’ll be uncomfortable because of Down syndrome. Before I had Alice, I’ll admit I was uncomfortable around people with disabilities. I don’t really know why. Probably because I was uneducated about them and it was out of my comfort zone. But now that my daughter has Down syndrome, I’ve grown very comfortable around people of all abilities. I wish that everyone could get to the point of total acceptance. Because of this, I started a blog (WonderlandMommy.com) and an associated Instagram account (@wonderlandmommyblog) with the sole purpose of sharing the reality of Down syndrome. I share facts and stories to help people become more educated about Down syndrome and more comfortable with it.

My hopes and dreams for Alice are that she does whatever she wants to do in life. Down syndrome is not going to limit her. I hope that she realizes I’m behind her 100% all the time, and that she can do anything she wants to do. She’s going to do big things in this world.

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Ann: It’s pretty funny how naive many people are when it comes to Down syndrome. I was the same way before we had Alice! One person gave me a bottle of Holy Water and told me it would cure Alice’s Down syndrome. I just couldn’t help but laugh.

Another thing that happened is that someone came up to me when I was with Alice and said, “I know a family who has four kids and the third is Down syndrome.” I took a few moments and then replied, “Wow, that’s an interesting name.”  LOL. People are not Down syndrome; they just HAVE Down syndrome. What can you do but laugh?!
Miggy: While Down syndrome is widely recognized there is still a lot of misconception about it and even discrimination. How can people best approach or respond to your daughter? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Ann: Yes, there are sooooo many misconceptions about Down syndrome. I’m trying really hard to change the perceptions through my blog and Instagram account.

I heard a quote the other day that said, “Want to know how to treat someone with Down syndrome? Watch their sibling.” This couldn’t be more true. If you want to know how to approach or respond to Alice, watch Lucy! Lucy simply loves her unconditionally and treats her the exact same way she would if she didn’t have Down syndrome. The best way to approach or respond to Alice is to treat her normally… just like you would treat any other child.

To avoid awkward or hurtful situations, I wish people would simply ask questions. Sometimes when we’re out, people stare at Alice or our family. I don’t mind the staring because I think it’s a good way to show people how normal we are. Maybe it shows them that we are just like any other family… we just happen to have a daughter rocking an extra chromosome! Hopefully it shows them that our lives are in no way worse because we have a child with Down syndrome.  That being said, if they’re staring, I wish if they had questions they would just ask! I wish they would ask me if she has Down syndrome or any other questions they might have. I’m happy to share our story!

Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey. Is there anything you’d like to share about your older daughter and her relationship with Alice?

Ann: It brings tears to my eyes every time I think about Lucy and Alice’s relationship. When Alice was born, Tim and I were so stunned, scared and fearful of the future. How were we going to parent this child that we assumed would need so much? But Lucy didn’t skip a beat. She loved her unconditionally from the moment she saw her. Yes, Lucy was only 2 when Alice was born… but her immediate acceptance and love of Alice inspires me to this day.

Now that Lucy is 3 and Alice is almost a year, they interact like any other siblings do. Lucy loves to show off Alice and tell people all about her. And Alice lights up when Lucy is around.  It’s truly the most special bond, and I’m blessed to be able to witness it.Miggy: What is the biggest lesson you’ve learned since becoming Alice’s mom?

Ann: This past year since Alice has been here has been the most enriching year of our lives. We have learned more from her in one year than I could ever hope to teach her in a lifetime.

The biggest lesson I’ve learned has been the beauty of differences. We are all different. Some people have Down syndrome, some people don’t. Some people have cerebral palsy, some people don’t. Some people have two arms, some people don’t. We are all different and that’s OK. It’s more than OK, it’s great. Alice has opened my eyes to a whole new world. I see people for who they are now… not what they look like, how much money they make or what they bring to the table. I just see them for who they really are. It’s been an amazing ride, and I’m so excited for the future. If everyone had a child with Down syndrome, the world would be a better place.

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Ann, thank you! I absolutely loved your last line, “If everyone had a child with Down syndrome, the world would be a better place.” I know exactly what you mean. I used to think, “Nobody would ever WANT a disabled child” but rather it something people could learn to live with. Maybe even feel “grateful” for in the same way we’re grateful for trials that make us stronger. Like all special needs parents were just heroic for “taking it all on” and with such “good attitudes” at that. Haha! Of course not all special needs situations are created equally–some situations are more difficult, painful, emotionally and financially taxing–but one big hardship full of pity parties and tears? NOPE. I can practically feel the love and joy you have for your daughters jumping off the page. And yes to amazing siblings who don’t see disability, just love. Thank you so much for sharing your story. Please give your girls a squeeze from me.

If you or someone you know would like to be featured in the special needs spotlight please email me at thislittlemiggy@gmail.com.

Have a great weekend!
XO,
Miggy