Tuesday, October 23, 2012

Overcoming the label

Being Down syndrome Awareness Month, as it is, I have been very unaware of it lately. Fiona is picking up new things every day and is totally and completely a little toddler now. She is talking (or at least trying), understanding and nearly running. I swear I see more of her back then her face these days, as she is off taking on the world. Independent is her new middle name.

I'll never forget a friend from high school, who is black, telling me how he hated Black History Month. How all the attention and awareness and concentration on black people just brought on a different kind of racism- a positive per-say division between black and white. Truly we will be a non-racist society when we see achievement and not define what color of skin achieved it. I sometimes wrestle with this same frustration now that I have experienced minority first hand, and question the benefits of awareness. While there are many, it also just further points out differences.

I have a tendency to like to talk, to share what I know and what I learn.  Its hard for me not to talk about Down syndrome because I am passionate about my daughter and her future and its a big part of who she is. If I get the slightest sense that someone is looking at Fiona curiously, or attempting to figure out how she can be almost 2 and a half and only be the size that she is, I jump on the chance to talk about mosaic Down syndrome. And as the words are flowing out of my mouth, I realize that the person I am talking to now completely views my daughter differently thanks to the mention of Down syndrome. Whatever they know about Down syndrome, or have experienced with Down syndrome, now in their eyes Fiona is that. And most the time, its not bad stuff they are associating with her. Things like "loving" "happy" or "fun", but awareness also brings classification. She's labeled. The stinking label. Its there for life.

I know that our experiences with this and Fiona are a little different then most parents who have a child with Down syndrome, because, Fiona has mosaic Down syndrome. For us, most people would never know she has Down syndrome unless we say it. They can obviously see she is delayed in growth and delayed in development, but because of her mild physical markers, the ball is in our court to enlighten that she has Down syndrome. She doesn't have those obvious eyes, or a flattened profile that most associate with Down syndrome.  And I have been tempted to avoid it, to give Fiona the chance not to be labeled, but its next to impossible for me to keep quiet. One, because its the easiest and quickest way to explain to the look of confusion I get when I mention she is 2. And then two, because I am proud of who my daughter is, Down syndrome included. I am in awe daily with what I learn about Down syndrome and those who have it. How normal their lives are, how typical their needs and wants and dreams are, how amazing their drive and their hearts are. I love being able to show people that, yes, my daughter has Down syndrome, and yes, you were just drooling over how cute she is. That opportunity to let someone feel that Down syndrome is not scary, its not sad, its not pitiful. Its a vibrant, sassy, independent beautiful little girl.

That is what awareness is about. It does point out difference, but in a way that makes us all more understanding and inclusive towards differences. And what it hopefully helps people understand is that Down syndrome does not define my daughter, she defines herself.

Wednesday, October 3, 2012

My Faith and My Daughter

I have mentioned before how I struggle with the accusation that because I knew Fiona had Down syndrome prenatally I acted selfishly to still continue the pregnancy. When I look at my beautiful little girl, full of life and laughter, its insane to think of the alternative. Her worth is apparent pretty much to all, now that she is out in the world, gushing with awesomeness (if I do say so my self). Her life is not going to be typical, she has had to struggled through health issues we were aware of before she was born, and I can guarantee that she will endure emotional pain due to her extra chromosome, as well as we her family endure emotional pain also. But... in spite of that, I choose to give her life. I choose to let her live, and feel and make her own decisions and prove her own potential, because I love her.

To some people this just doesn't make sense. They say that's not love, that's selfishness.

Although I have heard "God is love" all my life, I never really fully wrapped my head around it. I have said it, and nodded my head in agreement to it, but it was something that never made it all the way from my head to my heart. Till something struck me the other day.

He gave me life knowing I was going to struggle. He gave me life knowing I would get hurt, and fall, and feel pain, and be made fun of. Even more, He gave me life knowing that I would turn my back on Him. That I would hurt him, fail him, even at times spit at him.

I finally understood how much he loved me.

He loved me that much that He choose to give me life, to let me feel, make my own decisions and achieve my own potential, because He loves me.

Although I have been a believer most of my life, there have been many doubts I have had about my faith. Philippians 15 tells us that if you disagree on some point, God will make it plain to you. And there are lots I have disagreed with. I questioned God many times why He even created us all? Why make us when He knew we would sin, that He knew we would fall, and He knew that so few would ever come back to Him. To me, that doesn't seem like love... it seemed selfish. .But the earth shattering realization was that I know how deeply my heart ached for Fiona, regardless of what I knew her future probably held. To me my love for her was so strong just one day with her would be worth any pain I would endure. How much more must my Father love me to willingly create me knowing my every sin, my every failure, everything that would cause him grief from my life- that He wanted me to have the chance to love Him back.

I know its not popular to be a believer in our post modern society. The Bible predicts that. Trust me, I know that understanding one thing just opens the door for another hundred questions. I have already asked many stemming from what I just explained. I wont be able to explain everything, some things are beyond my comprehension. And that does not sit easy with people who need tangible answers, it at times is not easy for me. But this understanding of just how much He loves me, its made me realize just how much I want to know Him, regardless of my doubts.

I used to look for ways of talking around or sugar-coating my faith or my pro-life views as to not turn off people who have a bad taste for Christianity and are staunchly pro-choice. Its much cooler to be into universal-ism-  your god is your god and mine is mine and nature is my church- type thinking. But the truth is, me accepting my daughter for exactly how she is has everything to do with my faith. And not because I am following some rule of my religion, but because I completely recognize God was pro-life with me.

And may you have the power to understand, as all God's people should, how wide, how long, how high and how deep his love is- Ephesians 3:18

Tuesday, October 2, 2012

To my kids

Dear Gavin, Breiden and Fiona-

I am told by G and B's teachers you boys love to talk about your family. Most of the pictures you draw are some combination of you all, daddy and me, or often all 5 of us together. You love your family, and oh how I pray that you always will.

Someday, my weirdness may embarrass you, or dad's jokes may annoy you. Being patient and forgiving with each other will not always be easy, and at one time or another your pride for your family may temporarily dwindle.

But I will never forget how you love each other now.

The bond you boys have, that twin bond- best friends long before I even laid eyes on you. You prefer each other over any other friend and frequently tell us how you are each other's best friend. You do everything together, and the times you don't want the other around are rare. Most nights, you both want to sleep together in one of your tiny twin beds. Just being that two feet apart in different beds is too far for you.

At times, you do get annoyed with each other. Of course you fight over sharing your stuff, and your different personalities sometimes collide. Breiden, one night you told Gavin he couldn't sleep in your bed because he sleeps too messy. Poor Gavin, you were heartbroken, sadly pleading, "But Breiden, you're my best friend!" It didn't take long for Buba to change his mind, he wanted his best friend by his side.

Fiona, you are rarely a third wheel. Your brothers include you in almost (almost) everything they do. They find a way for you to be involved. And they keep asking me if you are old enough yet to have a camp out in their room. We tried, but you don't like to sleep anywhere but your own bed.

Breiden, you are my mini general. You like to keep every one in line, and I frequently have to remind you you are not in charge. I hear you sending Gavin to his room when he is not picking up his toys, and reminding him when he is doing something you both know is wrong. You have a good heart, just a little on the bossy side sometimes :) You adore Fiona, always calling her princess, pretty girl, or telling her how beautiful she is. The two of you have a special bond.

G, you are my little helper. Nothing motivates you more to do something then when I ask "Who wants to be my helper!". You call your self my little chef and like to assit me when I am cooking, and have a servants heart, most of the time. That is, when you are paying attention :) You love to help Fiona and go get her toys, I find her crib covered in toys every morning that you throw in there for her. Your "brudda" is undeniably your best friend. You almost never talk about anyone else, besides Fi and this little girl Brooke from church. (You once had a melt down because we were going to play with friends and I didn't know Brooke's mom's number to invite them :). Your favorite face to make when I ask you to look at the camera is the one below, I love your personality, little man.

You know Fiona, your brothers are the first to greet you every morning? I am usually wakened by the sound of the three of you laughing drifting from Fiona's room, or, by one of you boys coming to tell me Fi is awake, while the other one plays in her crib with her. You light up at the sound of their voices and they fight over who gets to hug and hold you on the couch.

Boys, although you are best friends, Fiona is your princess. You gush with pride for your baby sister, and almost always help her and watch out for her. In the same way, you include her and treat her like "one of the boys", and Fi, you do your best to keep up. I've never seen a tougher little girl. Getting knocked down usually sends you into laughter, as long as you are playing with your brothers. You boys teach her new things everyday... some which are bad. But no one makes Fi laugh like the two of you do. She admires everything you do.

While you boys are at school, Fiona you look for them. Going to their bedroom and calling "Ba?", looking at me for an answer to where they are. She misses you when your gone. Fiona, nothing excites you like when your brothers come home. It looks a little something like this...

Oh, how we all adore you, little girl!

God has blessed each of us with each other, placing us together for His glory  Not only do I pray your love for our family continues, but that you also grow and understand God's love for you each and every day. We may fail you, but He never will.



Happy anniversary to your dad and I. Three years and counting, blessed to have each other and hope that we never make you doubt our love for each other. Our marriage is a gift, just like the three of you.

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