Wednesday, April 11, 2012

The Good Fight

When ever talking to someone who is curious about my life with Fiona, there is one question that always comes up.

What is the hardest thing about raising a child with special needs?

It always throws me. Because how do you define hard from different. Is it really hard to have a therapist come to our house once a week? Is it really hard to play intentionally with your child? Is it really that hard to put her braces on every night? Will it be hard if she doesn't go to college? Will it be hard if she lives with us the rest of our lives? Though certain things take more work, I wouldn't consider them to be hard.

There is one thing that stands out to me, and it really has nothing to do with the child. There is one aspect of parenting a child who is different that is challenging and can sometimes be so mentally hard. Advocating.

Its a never ending job of a special needs parent. Whether it be things like explaining Fiona's medical conditions, pushing for the best services, undoing stereotypes, defending her worth, defending her life- all the way to future things like making sure she gets the best education, that people do not underestimate her, that they set the bar high enough for her, that she is included, that she is given opportunities.

I wish I didn't think about Down syndrome so much. I wish I could stop fearing the "what ifs" that consume my mind some times. I am a planner. A preparer. Which can be a good thing. But it can also be crippling. In the here and now, Down syndrome is not an issue. If it weren't for having to talk to people who think Down syndrome is bad.... if it weren't for having to hear people throw around the R word... if it weren't for the knowledge I have of how many people abort babies like mine, how many dump them in orphanages and turn their backs on them.... if it weren't for bullies... if it weren't for ignorance... if it weren't for stereotypes. These are the things that bring pain into my world. The misconception of my daughters worth and potential. The day you welcome a child who does not meet societies standard, is the day you are offered your shield and your sword and welcomed to a fight you are not prepared to fight. No amount of research or understanding can dull the pain of others ignorance. Just 2 years into this battle, and my armor is covered in dents from blow after blow.

But behind that armor, is what it is there to protect. My heart. That flows with the same blood that is pumping through my daughters veins. No blow will ever reach it. No blow will ever destroy the power of it- the unbreakable love I have for Fiona. Nothing makes me think less of her, less of our life. The pain from each blow is purely that those who strike cannot see through my eyes.

Some attackers are vicious. They truly see Fiona as scum. A drain on society, a worthless stealer of air. Their attacks try to reach my protected heart with full force. Praying that I feel some sort of remorse or regret for bringing such a worthless person into this world. These people are real. They hid behind anonymous names and pump money into research aiding the genocide against those who are created less-then-status-quo.The venom is so bitter and their hearts so black, my pain comes not from their blows, but the lack of hope they will ever understand. I doubt you are this person if you even care enough to read my thoughts.

But most of the attackers are well-intended, and in fact you may be one of these. They think they are offering hugs, but yet they squeeze too tight. Please do not think that encouraging that Fiona is "happy" "lovable" is a comforting embrace. I want you to see what I see. That she is sassy. That she is strong. That her hurdles are much higher then your kid and she is still able to jump most of them. I would rather you be surprised she is not doing something, then you be surprised she is. We shoot for the stars, while embracing where ever we reach, and this is how I want you to treat Fiona. Like she has potential.

I could have turned my armor down. Said, no, I will not take part in this fight. I could try to avoid it, ignore it, and go about pretended that everything is 100% normal. Or maybe crawl into a protective bubble of close family and friends, homeschooling, and seclusion. But I am a preparer. And I don't like to be blindsided. The fight will come to me whether I accept it or not, and I like to be ready, sword in hand.

And I am realizing, that although advocating for the best life possible for Fiona is my personal number one priority in this battle, much much larger and greater victories can be won in these fights. Compassion, understanding, true equality, unconditional love, and life.

Call me jaded, that I don't see how bad our life is because of Down syndrome. Maybe I am. But I still argue, does that even matter? Does it matter if when you should feel hardship and burden, you instead feel strength and joy? My intended message has really never been how Down syndrome effects me (although I tend to talk about this a lot because I am human and therefore selfish), but rather how it does not affect my daughter. How she is first and foremost a person, who feels the full spectrum of emotions and learns and grows. Who loves and is loved. How there is no formula for a perfect life- perfect in fact, cannot be pinpointed, but it itself has its own grande spectrum. I fight for her value for her, as well as for every precious being who is given an extra chromosome- that those who now don't understand, will understand before they destroy something amazing.

Although my armor is damaged from one person's choice, I have many moments were I see triumphs in battle, seeing light bulbs go on and a new-found understanding of both life and life with Down syndrome. Each blow only makes me fight harder, scream louder. I will yell at this inanimate wall until it falls down or comes to life. For just one person to understand my heart would be worth me losing my voice...or my typing fingers.

Fiona- you give us strength that we could not posses without God's grace. Our love for you transcends any hardship, and we are grateful for this priceless gift we were given. We pray you grow to embrace your difference, to praise the God who chose you to walk this less beaten path. Our baby, your stars may have been placed further out of reach, but those that do fall in your hands are brilliant and beautiful, and our hearts soar for the chance to be a part of your life. We gladly wear our armor and stand ready for every blow, praying that we will continue to see them be fewer and farther between as the world's hearts and eyes are opened. We will say it till the day we die, you are worth everything. - Mom and Dad


  1. I was just thinking this same thing the other day. If it weren't for other people, if it weren't for having to live in this world with so many, life would be perfect!

    I'm speaking at our MOPS group in two weeks and my topic will be, "What is the hardest thing about raising a child with special needs?" I decided on this topic a couple of weeks ago. For me, the hardest part is.... public reaction. The way they stare at Beth, how impatient they can be when Beth is trying to do something on her own.

    Life would be perfect if it weren't for the people! :)

  2. This is a beautiful post. Our 3rd child, Daniel, is just a month old and has Down syndrome, so I'm eager to hear these kinds of things from other parents of children with Down syndrome.

    1. A month! Sweet new baby :) congrats on another handsome son.

    2. Thank you! I found your blog through google, although I can't remember now if your blog came up on the search or if it was another blog that had you listed on the blogroll.

  3. Shannon - I love this. Words I wish I had typed. It's this social thing that is the biggest change is a big key to all of these issues we & our children face each day. It's gotta change. We can't back down and hide in our bubbles - altho I know I would probably prefer that most days. Getting our kiddos out there in the world not segregated in a seperate room at school (for ex) is one of the best ways to show "others" who our kiddos are and what they can do and teach others - they're amazing teachers! Thanks for your words - especially as I prepare to advocate for my little guy who will be entering kindergarten in a year.....xoxo

  4. I LOVE this post! I 100% agree, advocating is the absolute hardest thing about this path we're walking! I have never met the poison head-on, but when I do, I pray my swords are strong enough to dent their armor.

  5. This is truly the biggest obstacle as I put Kristen more and more out there. Society and their perception...amazing post and thoughts.

  6. well said...very good...I agree advocating can be the hardest most challenging and frustrating part of mothering...and it is also the part that can be the most stressful and unkind...I never knew that this would be the "hard" part...I was an advocate for children in general for years before Maddie...for unprivileged children from disadvantaged circumstances...but when they are your fight a bit harder and regards to Maddie small things words actions can rip my heart and make it swell in the same moment...not sure how she captures my fullest attention and manages to manipulate every moment in my day but she does...and I love it...smiles

  7. Loved this! And I love how you say the hurdles are much higher for Fiona, but that she is still able to jump them...It's so true. Our kids work so damn hard to do things that just come naturally to other children...And yet people don't see the strength our children have, the determination, all the hard work they put in...They see our kids as "happy" and "lovable" and "sweet"...They don't truly see our children for what they are...I want people to look past all that "He's so happy all the time" bullshit, and see my son and everything that is so strong inside him.
    I always tell you this Shannon, but I so greatly admire the way you write and share your thoughts and feelings.


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