This Little Miggy Stayed Home: Special Needs Spotlight || Zoey + Ruby

Friday, October 26, 2018

Special Needs Spotlight || Zoey + Ruby

Hi, my name is Sasha. I have a hilarious husband and five awesome kids, including two little girls, Zoey and Ruby, with Down syndrome!! Our life can be a little loud and super crazy, I wouldn’t have it any other way! Homeschooling keeps me quite busy, but I also like to do creative/crafty stuff and have a strong passion to share and advocate about Down syndrome! I’m obsessed with taking photos and making videos which I share on Instagram and YouTube!

***************

Miggy: Welcome Sasha! So glad to have you here today. First, can you take me back to the day you found out your daughter Zoey would have Down syndrome? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Sasha: It was October 22, 2009. I was awaiting amniocentesis results, the doctor called and got to his point quickly, saying, “I’m sorry, your baby does have Down syndrome.” I’m not sure I actually felt anything. I held back tears, then called my mom and couldn’t get the words out--the tears came instead. Looking back over the years I’ve recognized that I was scared--of all the unknown things. I just had no idea the world my daughter was about to pull me into, then in January she was born. I only got to hold her for a couple minutes--but she looked into my eyes and I into hers and I felt something incredible! I knew we were all going to be perfectly fine!
Miggy: Having a daughter with Down syndrome inspired you to adopt another child with Down syndrome, your daughter Ruby! How did this decision come about and what have you learned through this process?


Sasha: When Zoey was still very young a friend told me about Reece’s Rainbow, an advocacy site for children with Down syndrome and other special needs all over the world who need families. She told me there were waiting lists and people really wanted to adopt babies with Down syndrome. I admit I was surprised, I mean I knew all the beauty to be seen having a child with Down syndrome but it was amazing to think people would choose a child with Down syndrome! I was very intrigued and from then on I would look at Reece’s rainbow from time to time. Adoption had always been something on my heart, now I knew that adopting a child with Down syndrome was what I wanted to do some day. I have learned that adoption is not easy, but it is so beautiful and so worth it!!
Miggy: Down syndrome, like most conditions exists on a spectrum. Can you explain how Down syndrome presents in your children and how her needs affect your day-to-day life? 

Sasha: Most of the time I just see my girls as my girls, I honestly forget they have Down syndrome! I am so accustomed to seeing them as individuals that I rarely see things under the guise of, “oh that’s from Down syndrome.” However, when I really look I know parenting them looks a little different than parenting my first three children. At six and eight they have to be constantly supervised, they still need help with a few daily living tasks, and they each have delays when it comes to education and understanding things. It doesn’t affect day to day life, it just is our life.


Miggy: What are the biggest worries you face for your kids? On the flip side, what are your hopes and dreams for them?


Sasha: I just want my girls to be seen for who they are! I want people to take the time to know them and appreciate them, they’re amazing girls! My biggest worries are always that people might be unkind to them or that people will have an unfair expectation of who they should be or what they should do! My hopes and dreams are that they would each find things that bring them joy, that they would pursue their own dreams and feel proud and accomplished!


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?

Sasha: I mean, we have tons of funny moments when the girls do something that embarrasses us a bit, but we have to just laugh because they do it so innocently and with such a sense of being uninhibited! I would also say this goes for a lot of the joy we feel when their uninhibited nature puts smiles on faces around them--when they burst into song or dance in the store aisle, it’s pretty cool to see their effect on people!
Miggy: Down syndrome is one of the most widely recognized disabilities, yet still shrouded with misinformation and prejudice. How can people best approach or respond to your children? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Sasha: Just treat them like you’d treat any other kid! An extra dose of patience is warranted at times, it may take them a minute to get their words out or they may not understand the nuances of appropriate social behavior, but overall they’re just kids who want to have friend and have fun like any other kid does! Always feel free to ask me questions, I’d love to be asked rather than my child be awkwardly stared at or avoided.


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 typical children and their relationship to your kids who have Down syndrome?

Sasha: My kids definitely see their sisters as just that, their sisters. I think Down syndrome is the furthest things from their minds most days. My oldest understands the most and like us (mom and dad) she has come to love and appreciate individuals with that magic extra chromosome!

This Little Miggy || Special Needs Spotlight || Zoey + Ruby
Miggy: What is the biggest lesson you’ve learned since becoming a Down syndrome mom?

Sasha: My biggest lesson has been to make the unknown known. My fears were based on the many unknowns of Down syndrome, but once I had my daughter in my arms the fear was gone. Here I had this beautiful baby and I was determined to let her show me who she was going to be!

***************

Sasha, this was beautiful. First, Zoey and Ruby (I love their names!) might be the most adorable girls ever. I've been reading your last paragraph a couple times now and I can't get this line out of my head, "My biggest lesson has been to make the unknown known." Simple yet profound. It's the unknown that really scares us isn't it? And really, all of our children are unknown in one way or another--temperament, strengths, weaknesses--and yet as we get to know them our fears melt away because we know them and we love them. I'm going to keep ruminating on that thought some more. Thank you for all your wonderful insights and give your girls big hugs from me. XO

As always if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy @ gmail dot com. 

Have a fantastic weekend!
XO, 
Miggy

No comments:

Post a Comment