Sunday, January 30, 2011

Fitting into the Box

I'm sitting here right now shocked by how defeated I feel sometimes being a parent of a child with special needs. I'm shocked because I guess I thought I'd be immune to these feelings since I CHOSE to be a parent of a child with special needs. But really, the only difference is that I never had to grieve the loss of the child I thought I'd have since Zoya was everything I dreamed of and more....I chose her and I chose her Down Syndrome. Lately I feel like I've had to fight for what Zoya be given opportunities that any other 2 year old child would have. Preschool transition meeting is coming up and we already know what their recommendation will be....because it is the same recommendation for all children with Down Syndrome, regardless of their abilities. Then we will have to fight for her to have a chance to learn alongside peers without special needs.  I wish people would look at Zoya first and her Down Syndrome second. It hurts my heart when she's automatically placed in the down syndrome box. Why? She has down syndrome? Why shouldn't she be placed in that box? Well, because that box was made by people who don't know and love someone with down syndrome. Plain and simple.

Church is another example of why I feel this way. In addition to the FACE COMMENT sometimes I just feel like there isn't a place for her at church. It's awful to feel this way because IT'S CHURCH! I've been unsuccessfully working on a special needs component for the kid's ministry program at church. It's been unsuccessful mostly because I am a little voice in a big world. The main problem? I truly feel like she is not wanted or accepted by some people in the children's program just because she is different. I didn't make these feeling up, I base them off of some comments that were made to us about Zoya.  I guess people don't know how to react to something they're not familiar or comfortable with.  Did you ever notice (those of you that have kids with special needs) that within the first minute of talking to someone about your child, you KNOW how they feel about children with special needs? Anyways, now I'm rambling.

My point is, it is so darn hard when the world doesn't see your child like you do.  I thought I wouldn't have these feelings because I knew what I was getting myself into being the parent of a child with special needs....let me rephrase that, I THOUGHT I knew what I was getting myself into :) You can never really know what it is like until you are part of the "parents of a child with special needs" club....biological or adopted.  I, like many new parents I'm sure, am so taken aback by my fierce love for Zoya. I would do ANY.THING for my daughter. I would walk through fire, fight a lion, jump off a cliff to save her....the funny thing I'm struggling up my pride to fight.  Fighting for what I know is right for her is a given....I will stand and fight for what she deserves....but that doesn't mean it's easy to stand in front of a bunch of people who think they know your child because they read a report on her and tell them you think their professional opinion is wrong (and it doesn't mean those people don't make you waiver in what you know is right in your heart).  In fact, its downright hard to go against the grain. I don't like to ruffle feathers or draw attention to myself, but damn it I will do it for my daughter and I will put my pride aside.  Because I love this child so fiercely and see every ounce of the blessing she is, I'm taken aback when other people just see her as "Down Syndrome." To so many, that defines her. To me it is simply a part of who she is. She doesn't fit into the perfect box that the world created...but that box is really overrated anyways.  If more people fit into Zoya's box we'd have a pretty happy, loving, accepting, giving, trusting, damn near perfect world.


  1. I must admit....I could "look a that face" ALL DAY LONG! She is stunningly beautiful.

    I don't know which state you live in. Do they not have a classroom for typical kids that also has children with special needs in it?

  2. I really appreciate this post. My two boys were both slightly special needs due to prematurity - although nothing quite like the diagnosis of DS, I know the feeling of needing to fight. On another note, as someone that dreams of adopting a child blessed with DS, it helps to put a little more reality in my dream and let me know what is in store for my future - God willing!


  3. OK, I just came across your blog, and I love it. What a gorgeous daughter you have. Sorry for all the crap you are dealing with. We have been blessed that our church and intervention system have been really great.

    I love your take on things and your honesty!

  4. There is definitely no "off" switch on Ms. Zoya's cuteness is there....

    The momma bear is coming out in you to protect your little cub, be proud of that. Zoya is definitely worth sticking up for and no one knows that better than you and Shawn.

    Good luck, you are stronger than you know and will do what is right for ZOYA!

  5. Amen! Ms.Zoya is amazing and so is your story! I found your blog by shear accident and have followed it for about a year now! I have truly been blessed by Zoya, you, your hubby and this blog! My friend has a child with down syndrome and he is very accepted in our church and community. My only comment about the situation at church is maybe you should think about moving to another church where Zoya is seen as the beautiful blessing she is!

  6. I could write a novel here, but I just wanted to comment real quick and ask if you've thought about switching churches? I guess my thought would be that if people are not going to accept my child, then we should just move on, because there are a TON of people that will accept her! You should come to our church (too bad we're in Michigan)! They do a great job of accepting everyone! In fact, just recently, we had a child come in with a pretty severe case of autism spectrum, and we all got together to figure out how we could make HER morning the best morning of the week (which we do for every child, but her needs were clearly, different. Not bad, or wrong, but different.)
    That little zoya sure puts a smile on my face, and I cant quite grasp how anyone could think differently!

  7. Why would anyone put this littlle cutie ( of course as well as all the other children with special needs) in a box? She is just too darn cute! She is a wonderful miracle from God! She just keeps getting cutier and smarter by the minute!
    -- Alexandra

  8. It's fun, eh? Welcome to the club. The pic in your header reminds me of my daughter, Nika, that was adopted. Must be the hairdo! LOL!

    A thought ... for church ... maybe somehow pull off an educational thing, to make people feel more comfortable and/or knowledgeable??

  9. What Down Syndrome? All I see is that smile. She has such JOY!

  10. Oh my goodness, I miss my little Zoya. She can brighten anyone's day. Everyone benefits from her unconditional love. Both of you have so much to teach the world.

    Miss you all,
    Grandma P

  11. If more people fit into Sarah's box we'd have a pretty happy, loving, accepting, giving, trusting, damn near perfect world. Sarah, you have a wonderful heart for your daughter and I know how much it breaks when people don't see what you see in Zoya. You are pushing open doors for her and trying to protect her at the same time and that is a tough job for anyone. I have an older son with Asperger's and fought for years for him to be integrated into a regular classroom and he was, which was great for his education but terrible for his self esteem. He suffered so much because of what I thought was best for him. I guess we all do the best we can, sometimes we soar, sometimes we fail. I don't know what is right for Zoya, she should have the world laid at her feet and people that see her and not DS, oh to live in a world like that. I know your heart hurts for the way she is treated. Zoya is perfect in our eyes and we will focus on that perfection. Just know you are not alone and you are a wonderful momma to a lucky little girl.

  12. Oh how I've missed reading your blog the last couple months and seeing Zoya's precious face and big smile!! I have lots of reading back and catching up to do :) So glad I got to sit down a minute and pull your blog up. It always puts a smile on my face!! Thank you for sharing!

  13. Sarah,
    I agree w/ the earlier comment that maybe you should provide your church members w/ an "inservice" on children that have down syndrome. Take any chance that you can get to share your joy of being Zoyas' parent. Sometimes the fear of the unknown can be pretty scary (as you are well aware of). It's sad that people continue to treat others differently based on their appearance (especially at church)!
    I love following the blog and seeing how Zoya is growing and changing!
    Aunt Janice

  14. Your post brought tears to my eyes. Oh how I wish I'd had a mother like you growing up. You are truly as much a blessing to your little ones as they are to you.