Tuesday, August 23, 2011

Sometimes, it's still hard.

Charlotte is coming up on 15 months old, and we are all doing pretty well. I love my girl more than life itself; I would do anything for her. She has become an integral part of our family and it is hard to remember life without her in it. Our days are better because she is here and we thoroughly enjoy watching her grow and learn. I no longer worry when I am out in public with Charlotte if others notice that she has Down syndrome. In fact, I am dang proud of her, and welcome stranger's comments about how cute she is. Gone are the days of me worrying about what others think. I can freely talk about Down syndrome without tearing up, and I now welcome the opportunity to educate others about it. Down syndrome no longer occupies my every thought, and the days of sadness are long gone.

However, sometimes, it is still hard. Occasionally, I will see an individual with Down syndrome in the community and it will make me sad for one reason or another (on the flip side I also have had many times where I have been encouraged by others!). Sometimes, I get knocked off of my idealistic cloud that I tend to ride on, and am reminded that Charlotte will face challenges in this world that my older two children will not. Sometimes, I get really mad at that 47th chromosome for adding these extra challenges to her life.

During the past 15 months, I have met some amazing people because of Charlotte. A few of these people, I am proud to now call my friends, as we are bonded together by our children's extra chromosome. I have a long way to go; I am slowly immersing myself into the Down syndrome community. I am not going to lie; it can be overwhelming at times. There only so much I can participate in and read about; after all, we do have a life outside of Down syndrome! I tend to hide behind my computer and read blogs and message boards, as it is at times easier than face-to-face interactions. It also protects me from those feelings of sadness that sometimes still pop up.

As you saw in the last post, we are raising money for Wisconsin Upside Down during their annual Buddy Walk. I whole heartily believe in the cause; raising awareness and acceptance for my daughter and those who share her extra chromosome is so important for their future. I am honored to have so many of our friends and family participate with us. Last year the walk was a few weeks before Charlotte's open heart surgery. I attended, though, I gotta tell you, it was hard. Those feelings all still fresh, with less than four months under my belt. I am in a better place this year, time really does heal all wounds. I also know that next year will be even easier, and the year after easier still.

I guess the purpose of this post is to point out we all deal with things in different ways. There is no time requirement on how long it takes to accept your child has a disability. Each one of us needs to do what feels right, without judgement or pressure from others.

A friend of mine, who has a daughter with Down syndrome, recently asked me if I felt that I needed to "do something great", and use Charlotte's disability to achieve this. I do feel like there is an unwritten expectation in the Down syndrome world to advocate and raise money for awareness. However, I am trying to stick to what I feel comfortable with, when I feel comfortable doing it and trying to avoid all pressure to do more.

And frankly, the only "great thing" I want to accomplish is to be a good mom to my three children. 46 chromosomes or 47....in our house, it really doesn't matter; they are all loved and treated the same.


Happy Tuesday everyone! There is a lot of positive energy floating around our house right now; the new swing set comes tomorrow!! Pictures to follow, the kiddos are pumped.


  1. Hey it is mellypelly from babycenter - just saw your note about our coincidences, having our girls the same week - and us at the same age! too funny! :)

    Looking forward to reading your blog! :)

  2. I know I seem to say this often but you keep making me cry. This is just beautiful Em! I was reading it on my laptop and the kids asked me what was wrong and why I was crying. I said, "it's Emily's fault". Gracie just smiled, she knew. :) And as far as "doing something great", you already have.

  3. You are making me cry too! And we LOVE the photos, Kayla is sitting her "talking" to Charlotte as I read the blog, so cute!


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