Tuesday, January 25, 2011

Failed Advocate

Recently, I realized that perhaps I have failed as a friend with a special needs child. Perhaps I have failed to communicate what life has really been like since having a daughter with Down syndrome.

I am blatantly honest on my blog. It is how I have survived the hard times and celebrated the good times. I have found a new balance in myself and that balance includes naked honesty.

Sometimes being so honest can cause people normally not touched by a special needs child to see only the negative and stare in horror, unable to look away because of the grotesque nature of the accident.

Lately I have gotten the feeling that people are carefully watching my life and praying like anything that they don't wind up like me. My first reaction is to cry and feel sorry for myself that people are pitying me in such a fashion. My second reaction is anger and hurt.

I have failed as an advocate of Down syndrome.

I have failed to convey how blessed and wonderful my life is, not in spite of, but because of Addison.

I wish that I had a friend with a child with a disability when I was pregnant with Addison. I wish I could have watched someone go through hell and see how none of it even seemed like a blimp on the radar because of the love they had for their child.

I was devastated and heartbroken when I found out that my daughter had Down syndrome because I had no idea what Down syndrome was. It sounded like a horrible defect to me. a mistake. I was so ignorant.

I wasn't trusting God in His complete sovereignty. To my way of thinking, this shouldn't happen to me. I was too good to be touched by such a trial. That was for other, less educated, less classy people. People not as deserving as myself.

I was an absolute arrogant fool.

God created my daughter perfectly. perfectly. There is nothing wrong with her. Health problems were part of her perfection. Having to work through those was part of His plan for us. He created her and has sustained her life in a miraculous fashion, turning my life upside down in a wonderful way.

In a way He gave me far more than I deserve. He gave me the most amazing baby I could never have imagined in my wildest dreams. He gave me Addison.

You have seen me this past year- open and exposed- showing my fears and my doubts, revealing my inner struggles as I faced this change in my life.

I am here to tell you that Addison is honestly the best thing that has ever happened to me. Having Addison has changed my selfish little self into a slightly less selfish version of myself (just call me a work in progress). It has made me more accepting, more loving, more human.

Loving Addison has been my favorite thing ever. Holding her close and thanking God every day for giving her to me- I didn't know what living was until she was here to show me.

I have failed as an advocate of Down syndrome when I see others around me desperately praying and pleading with God to please let them not have the life that I have.

First of all, don't you think God knows better? Don't you think God has a perfect plan for your life as well? If He has a special needs child in your future, will fretting and worrying really change that? If He has a special needs child in your womb, the unknown can be scary, but you also can know that you are about to receive the greatest blessing known to mankind. Why would you desperately plead for something other than God's perfect plan for you?

Second, how can you look at the love in our house and the joy and happiness and wish anything else for yourself? Your joy and happiness may come in another form, or it may not. Either case, don't waste your pity on me.

My Addison, my Chubbs, is my greatest blessing. God gave her to me because He is good.

I'm sorry if you look at my life and are thankful every day that you aren't me because I have a daughter with Down syndrome and a lot of health needs.

I'm sorry because you just don't get it. You don't get what life is truly about. You don't get what love is really all about. You don't get what honestly trusting God is all about.

I'm sorry that I have failed in my mission to portray that.

This past year has been difficult- surgeries, hospital stays, financial struggles because of the former-

-but I am here to tell you that I would do it all over again in a heartbeat for my Chubbs. None of that even matters because I have Chubbs. Have I not made that clear? What do I need to do to get you to hear me? I love my daughter and will fight for the rest of my life for her to have the most amazing life possible. I will diligently work alongside her so that she can reach her full potential.

And you know what? I will love every minute of it because it's another minute that I get to celebrate life with my greatest miracle.

I look in her face and my eyes well up, not because she has Down syndrome.

Tears start to fall not because she has health problems.

I cry when I look at my beautiful daughter

because I am so thankful

that she is mine.

I am so blessed.

It is my dream that those of you following Addison's amazing journey would not fear what we have for children. It is my dream that you recognize God's goodness in our life and you trust Him for goodness in yours.

10 comments:

  1. That was truly beautiful, Deanna. I know without a doubt that you love Addison with all of your heart. It is evidant in every single blog post that you publish. Love you both!

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  2. Yes, Deanna we are truly blessed to have our kiddos. Beautiful post. I would have never considered anyone with a child that has special needs blessed before Bennett but now, though it's hard to explain to someone that hasn't been there, it's truly wonderful. And I know our kids are just babies and people can say "babies with DS are cute but what about when they get older?" What about it? God didn't make a mistake with our kids. They were made just the way they are for a reason. Addison is such a cutie!! She is perfect in every way!

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  3. when I was preggers with Brooke I had many people tell me they were now scared to get pregnant...
    that bummed me out...
    I still think people are scared when they see us, after all, I'm young, healthy, had 3 other kids, and now look...it freaks people out...

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  4. I feel the same way when I look at Emily despite leukemia and all of the other health problems, I am just thankful she is mine and wouldn't change it even if I could! Addison is beautiful and perfect! Sometimes I do feel like people pity me because of all that we have been through and it's them I feel sorry for, they have no idea how increadible it is to learn how to truly love unconditionally and that is what Emily has taught us :-)

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  5. I hate to say it, but before I had Russell I never believed for a second when a parent of a special needs child said it was a blessing...I just couldnt see how...After having Russell, I realize its the truth...We love our children deeply, they ARE perfect, they ARE a blessing, NO question!
    Dont feel you have failed as an advocate though, some people will just never understand no matter what we say, or how they see us live our lives...And if they feel sorry for us thats their problem :)
    Very nice post Deanna, loved reading it!

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  6. I thought your post was right on - that having a special needs child is nothing for others to feel sorry for or to pray that it doesn't "happen" to them...

    But I get the impression that I'm disqualified to "knowledgeably" say that seeing as God hasn't blessed me with a "special needs child". I don't know about your other readers, but it has never even occured to me to hope that I don't have a beautiful ds baby like you. I'm all for honesty and have two honest statements to make that I hope hope hope aren't taken wrong:

    1. It's my personal opinion that a line has to be drawn between feeling sorry for someone because they have a special needs child and feeling sorry for someone and their child because they and their child have to go through a health-related procedure. Example: Olivia broke her leg and we feared concussion. I got lots of e-mails from people who "felt sorry for her and us" that she had to go through 48 hrs. of pain. But they weren't feeling sorry for me that God had given me Olivia... OK, maybe bad example - but it's the best I could come up with... What I'm trying to say is, maybe people feeling sorry for you and Addison shouldn't be automatically understood as a problem... Maybe it's something they would feel sorry for any mother/ child if going through something hard health-related...

    2. Every once in a while I feel reluctant to comment, because I don't have a special needs child. Like maybe you'll read into my comment that I somehow fit into the category you describe above: as somehow pitying you because Addison has ds. I haven't and I won't. And even though I don't have a ds child and therefore can't truly "understand" your life, I still think your baby rocks. :)

    I think I would kill for pictures as cute as yours from this latest portrait shoot. :)

    Oh, I keep meaning to tell you this, but Addisons adorable Christmas picture is on our fridge and it drives my 3 yr old NUTS because he always wants her to be "right side up" and thinks that she's upside down. :)

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  7. Rebecca, I love all of your comments and I hope that you never are afraid to say something just because you aren't coming from the same background. I love to hear your perspective- you always have wonderful things to say, and I value your comments highly.

    And yes, Addison does look a bit upside down in her Christmas card....that's just part of the charm. (-:

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  8. Our babies are a blessing now and will be when they are adults as well! Although I never pictured my life with a special needs child I can't imagine going back now. I like our new life, I like the awareness it has brought to myself and to my family. God knew what he was doing when he made these little miracles and I will forever be grateful!

    You are an amazing advocate for Addison and Down syndrome....it's apparent in the amount of love you have for her....she's a lucky little girl!

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  9. I don't think that you've failed as an advocate. You shouldn't think that just because of some. I can tell your blog touches so many people. For me, you have totally changed my thinking. I now understand that having a healthy child isn't the most important thing.

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  10. your post is beautiful!

    And neither you, nor I, have failed as an advocate. We won't convince everyone that our kids should be here, that they don't suffer. But what we have to remember is that we KNOW what is true and they don't. Our kids are perfect!!

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