Tuesday, March 1, 2011

Loathing to Love

When a mom is first told the news that something is wrong with her baby- her baby has the wrong number of chromosomes- the baby will never lead a normal life- be susceptible to a host of health problems- have limited intelligence and who knows what other issues- she is devastated. Her baby will carry the label Down syndrome- thereby isolating the baby from the human race in a fashion that causes the mother to cry as though her baby had died.

When this happened to me, my biggest fear was that I wouldn't be able to love my baby. I feared that I would be embarrassed by her- loath her existence- welcome health problems that might take her life early. I pictured her as an outcast to our family. What were were supposed to do with a baby that wasn't normal? We would be branded by that- mocked by that- known only by that.

I pictured ugly deformity. More embarrassment. And I felt as though my life had turned into my worst nightmare- a living hell.

I have been thinking a lot lately about my old expectations when I first heard those words "Your amnio tested positive for Trisomy 21. I'm so sorry" from the depressing genetics counselor. I cried and sobbed, picturing the things above and not wanting my life to change with such an unwelcome addition. I truly felt that I would never be happy again.

I didn't want to be "that family" or see our lives tainted by ugliness and the label "special needs".

As I look back now, I marvel at how ignorant I had been. When I think about those expectations verses how this past year has played out, I am dumbfounded and sincerely surprised at how untrue all of those fears turned out to be.

My biggest fear of not being able to love Addison? Sometimes I seriously laugh at it now. I am so in love with that little girl- she brightens up my life, makes me smile, makes me so extremely happy.

I think of how I was afraid that I would be embarrassed by her. I have never enjoyed showing off a "possession" more. I doll her up and take her out and beam proudly as the world proclaims her beauty. Speaking of which- I was afraid she would be the picture of ugliness. Um....have you ever seen her smile? I have never seen anything more breathtakingly gorgeous in my whole life.

The other night, I was watching part of the Oscars. In the past, I would watch a show full of such glitz and glamor and be jealous- thinking that they have everything that money can buy and furthermore don't have to deal with a special needs child. (I realize this is hugely overgeneralizing....but go with me here). On Sunday night, as I watched the fabulous dresses parading up and down the red carpet, I just kept thinking- wow they look great and their lives look ideal, but I actually felt sorry for them because I sincerely felt like the richer person with Chubbs in my life. It was a huge mental turnaround for me.

I was teaching a clarinet lesson today, and Addison was playing across the room with my student's mom. At the end of the lesson, Addison caught sight of me and started booking it across the living room....laughing and smiling. I thought that my heart would burst from love and pride.

In the grocery store today, she sat bundled up in her brown bear suit looking around curiously. Whenever I looked down at her, she would smile broadly back and laugh just a little bit. Grocery shopping has never been so fun.

Right before sitting down to write this post, I went in to kiss Addison goodnight and she snuggled up under her blanket and let out a huge sigh as soon as my lips touched her cheek. My smile has yet to fade.

I am just beyond overwhelmed how my extreme fear of a label depicting the number of chromosomes my child would have has transitioned into a love so fierce that I honestly can say that I have never been happier.

If in times past I had read about another mom having a baby with special needs say something like that- I would think that she just said that so that no one would feel sorry for the sad life that she had. Now, I am the one saying it. Not because I'm afraid of people feeling sorry for me, but because I am so in love I can't hold it in any longer.

We are only a year into our journey, but I can honestly say it has been a wonderful, wonderful year. On March 12th, we celebrate the anniversary of Addison coming home from the NICU. It kind of feels like a second birthday. I have been thinking so much of how far she has come in this past year and my whole attitude change towards being her mother. I am just amazed; and so in love; and so sad when I think of moms who stop in the fear stage, abort their baby and never get to experience the rest.

Because boy are they missing out on one of the best things that life has to offer:

A baby with designer genes.

That's something money can't buy....


  1. I love reading your post. I love special needs children they are so loving

  2. I have a shirt that says My daughter has designer genes....
    and I still seriously tear up every day over the guilt I felt about Brooke, about what she would do to my "perfect" little family...how ignorant was I? I still can't forgive myself...

  3. Very nice post Deanna, I could relate to every word. You know when I use to hear other Moms say how happy they were, how they wouldnt change a thing about their child with Ds, I never believed them either. Just like you I thought they were trying to convince people to not feel sorry for them...And now I am one of those Moms too, gushing about how great our lives are and how wonderful my child is...And I could care less if people feel sorry for me cause Russell is amazing and I wouldnt change a thing about him :)

  4. Oh what the Lord can to do a heart that will open itself up to just love....no labels. Her smile melts our hearts, here, too. How the Lord has blessed you and grown you and now given you this medium to be an encouragement to others.

  5. Once again you've made me smile, laugh and cry all in the same post. I am enriched having read it. Thanks, Deanna!

  6. Designer gene children have always had a special place in my heart, but I must say, Addison takes the cake. And, honestly, Deanna, when I first heard that you were pregnant with such a special little one, I remember thinking how GREAT it was going to be to have him/her in our midst. They are WONDERFUL people with much to share and teach us...much more than we could ever teach them.

  7. As a mom that found out 10 weeks ago that her daughter would have Ds, I have gone through all of the same initial emotions. And it is because of posts like this and others I've found through you that make me more optimistic about the little girl we will welcome to our home in just 9 short weeks. I cannot express how much your words touch me - and help me think of the good that will come from this child. Thank you so much for sharing your honest feelings - so that expecting moms like me can feel not so alone and not so guilty about those feelings.

    I hope this makes sense. I guess the crux of my comment is thank you from the bottom of my heart. I feel more normal after reading this post.

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  9. You know, ever since my child with the designer genes was born, I see life differently. It is such a richer place. Yes, we all initially go through the emotional struggles and I feared I would love Eslea ONLY because she is my child. But as a parent of a special needs child, you know, it's so much more. It's the way they change the way we look at the world and life and the people we experience.
    Once I was scared I would be ashamed of her, instead I am PROUD of my daughter and love to show her off.
    Love this post. :)

  10. EnidV- I cried when I read your post. If me being honest with my journey can help you on yours then all of this blogging is worth it. I am so unbelievably excited for you and hope that this won't be the last that I hear from you. I'll be praying for your and your baby's health as you deliver in nine weeks. A scary, but wonderful time for you all!

  11. So true- I rememebr 4 years ago reading a blog about a family who had just welcomed a baby boy with Ds into the world..I honestly thought they were putting a nice spin on things so that people wouldn't feel sorry for them! It's just like the grace of God- we often don't experience it until we are actually going through something.
    Thank you for sharing your beautiful heart here:)


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