Wednesday, March 2, 2011

Anna

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The following is a conversation that took place between Rich and Anna the other morning:

Anna: "Why do I have to wear a pull-up?"

Rich: "Because you have spina bifida and can't go on the potty."

Anna: "Ah ha. Does Timmy* wear a pull-up?"

Rich: "Yes, most kids with spina bifida wear pull-ups."

Anna: "Why don't sissies have to wear pull-ups?"

Rich: "Because sissies don't have spina bifida, Anna."

Anna: "Ah ha. Why don't sissies have spina bifida?"

When Rich repeated this conversation to me, my eyes teared up and my heart broke a bit. The last thing a parent wants is for their child to realize that they are different. And I hate to say that because we are all different. It is just unfortunate that this is the way that society operates.

There are moments, words spoken, thoughts that always stay with me. During one of Anna's many doctor appointments when she was an infant, her urologist (who we really like so this isn't a slam against him) told us that with bladder and bowel management programs, Anna would be "socially acceptable."

I remember telling a group of my close friends about that conversation and one of them said, "I hate when people use that term."

And you know what? I couldn't agree more.

And you know what else? Society, I am going to fight you with all my strength and power so that my baby has the best life possible. We will accept you. Not the other way around.

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I took these photos (along with some of Allie and Em) on Sunday. While technically not the greatest, I love how her little personality came out a bit. I wasn't having much success until I told her that I could see her little friend in my camera. That made her smile.

*The Spina Bifida Association gave us a book about a boy named Timmy, who has spina bifida and has to have his shunt revised.


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16 comments:

Jen said...

Such a hard thing for a little one to understand. She is such a little sweetie!

Lily said...

She is beautiful and strong.

I have a question. I remember reading somewhere in your blog that Anna must be cathed every 2.5 hours. Do you or Rich have to wake up to cath her at night?

From the bottom my heart, I hope that Anna has, like you said, the best life possible.
She deserves it.

Tina Michelle said...

How cute is she??!! Love those pics of her. That is a hard conversation. I hope her life is full of joy and happiness.

Katie said...

She is perfect just like she is!

I love seeing their personalities in pictures. Beautiful, beautiful girls.

Katie

Jamie said...

I am not sure if you are believers...but I am and I wanted to share this with you. In John 9, the passage begins: As He passed by, He saw a man blind from birth. And His disciples asked Him, "Rabbi, who sinned, this man or his parents, that he was born blind?" Jesus answered, "It was not that this man sinned, or his parents, but that the works of God might be displayed in him.

Anna is not different, Her SB will be used for the Glory of God. She will overcome many things, and God should receive Glory and Praise. God's plan for Anna is beautiful.

I have a dear friend with SB, she is an amazing woman...other than her "potty" differences, you would not know she had it. She has been through alot in her life, but SB did not define her. She is married, has a child, has never had braces or assistance in walking...played college softball. She is an inspiration to me and to others around her. She is also the President of the SBA of AL.

I pray Anna will become excatly what God wants her to be and MORE!!

Rich said...

Amen, hon. AMEN!

Love,
Anna's Dad (Rich)

soulsingingliv said...

I just started following your blog recently and absolutely love your honesty and ability to find beauty in everyday life. This post moved me to tears. Because you are so right, you will raise your little girl to be everything she can be, to live a full and rich life, and the world will not need to "accept" her, it will rejoice in her. I am a nurse at a critical care hospital and have the privilege to care for some very unique and determined people and their families. It is so inspiring to witness someone take their challenges in life and use them as fuel for the fire!! Many blessings to you and your beautiful family!!!

Cindy said...

I love how Anna shines in these pictures.

And yes, this is a difficult topic for Anna to understand, but it sounds like she is beginning to. And I know how difficult these conversations can be for the parents. They can tear at our hearts, but I think the difference is that your attitude will teach Anna and others about how their attitudes should be. A disability, a delay, a difference in ourselves DOES NOT DEFINE US. I can't say that enough. Our DD is going through some heavy stuff right now (and so are we), and trying to explain it to her so she understands and accepts that what happened does not make her different or less or any other negative thing. It makes her her, with another life experience that she will grow from and with.
And AMEN JAMIE - from your lips to God's and our ears!

Angela said...

I second what Jamie said. I couldn't possibly say it any better.

28 Have you not known? Have you not heard?
The LORD is the everlasting God,
the Creator of the ends of the earth.
He does not faint or grow weary;
his understanding is unsearchable.
29 He gives power to the faint,
and to him who has no might he increases strength.
30 Even youths shall faint and be weary,
and young men shall fall exhausted;
31 but they who wait for the LORD shall renew their strength;
they shall mount up with wings like eagles;
they shall run and not be weary;
they shall walk and not faint.

--Isaiah 40: 28-31

Christi said...

Great catchlights in these photos.
Seeing your reflection in Anna's eyes reminded me of something one of my favorite photographers, Karen Russell, once posted on her blog. She told one of her kids if she's ever not around to look in the reflection in their eyes in the pictures she takes because she's always there.

Elizabeth said...

Yeah well. Anna is "socially acceptable" because she's damn cute. So, there you go. Not all the babies in the world are as cute as she is. So there!

Our daughter is "different" in having a couple of learning disabilities. We have explained to her that the way she learns has enabled her to have the gifts she has. She is off the charts creative and we tell her that her creativity is a result of how she learns. She takes alot of comfort in that and has alot of pride in her creativity so that helps. Maybe as Anna gets older, the whole thing can be "spun" somehow.

ferfischer said...

I have ID twin girls, and one of them has some pretty severe disabilities - she will not be like her sister, even grown, but it's a BEAUTIFUL thing that her twin and big brother accept her just the way she is, and don't really even SEE that she is different in any way. She just is who she is. I hate that as they get older, this will change, because it is perfect just the way it is right now. And I'll keep it that way as long as possible! :)

Anonymous said...

Oh, my beautiful, adorable, very special Anna...I love looking into those beautiful eyes everyday and watching her grow into this loving, caring little girl!
Love, Grammy

Lori said...

So well written I can't even tell you...

I don't even know what to say except that your daughter is absolutely gorgeous and I applaud your strength.

Also, thanks for taking the time to comment on my blog. I am flattered :) (Also wasn't talking about you in my rant by the way!)

Wendy said...

Sweet, sweet Anna. That had to be difficult to hear, but as usual, you and Rich always handle the hard conversations the best way possible. lots of love to you.

Sarah said...

Thank you everyone for your heartfelt comments.

Lily - we do not have to cath Anna overnight.

Jamie - I honestly don't know how I feel about religion right now but your comment touched me. Thank you. That was nice to read.

Christi - I never thought about catchlights that way. I love it!