Down Syndrome Diagnosis – 1 year later

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This week is a big week for our family. This past weekend Landon got baptized and we celebrated Leilani’s birthday a bit early since family was in town. Tomorrow we will officially have a 2 month old and in exactly one week, we will have a 2 year old!!! But that’s not why I’m emotional…I mean, that’s part of it, but not all of it.

One year ago. That’s when our lives changed completely. One year ago. That’s when our eyes were opened up to what really matters in life and in this family. One year ago. That’s when we found out that Leilani had Down Syndrome.

Last week, I met up with my friend Katie and her adorable little girl Ruby, and we went to the mall to walk, shop and let Leilani play in the kid’s play area since the weather was hit or miss. As we were walking out of the food court, an older lady cut Katie and her stroller off and stopped right in front of mine, where Leilani was. She was waving and talking to Leilani and I’m sure Leilani was waving back and smiling that cute little smile of hers (I couldn’t see her face since she was in the front of the stroller, facing forward). The lady looked up at me and said, “I have a lot of friends with kids like these.” I just smiled at her and out of the corner of my eye, saw the look of horror on Katie’s face. I said to Leilani, “Ok Leilani, can you wave bye bye? We have to go now!” And then I told the lady to have a nice day and we continued walking. Katie turned to me and asked if this happened a lot and if it made me mad. My answer was yes, sort of, and that a year ago it probably would have made me mad, but today? Not really. Because that woman wasn’t trying to be mean, but was it right for her to say that? No. But last year, you better believe that I would have said something to her instead of smiling. I probably would have said, ‘Like what?’ to see what her response was. Last year I would have taken things a little more personally. But this year? It’s easier for me to be more calm and to process things before spouting off at the mouth. I have made a conscious effort to think about these things internally first. Maybe they don’t know any better. Are they being mean? Are they ill intentioned? And this is where I can be an advocate. I can share my experiences and try to teach from them. Because when you know better, you do better – or however that saying goes.

So, in 1 year you could say that I’ve calmed down a bit. I’m also very tired because I have a newborn so I have less energy to fight back. (We only knew about Leilani’s diagnosis for 2 months before I got pregnant again and the hormones probably didn’t help my sensitivity to it all either). Instead, I try to take everything with a grain of salt, process, and then educate. I beg you to educate yourselves about Down Syndrome. Because you will run into situations where you may not know the answer, but you’ll know enough to not offend someone with your interim answer. I no longer fear what people think when they see my daughter, because if you look at her and don’t see a super cute little girl, there may be something wrong with you. And I will always see HER first, not her disability and you should do the same when you look at others too.

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Some awesome things that have happened in the past year with Leilani.

  • She was just cleared by her cardiologist to never have to go back for a heart murmur ever again because it is GONE!
  • Her birth-to-three goals are always being met early and her educator is always super impressed with her progress.
  • About a month after her diagnosis she started walking (which is amazing for a kiddo with DS) and has learned to bounce (not quite jump because she is not getting off the ground yet), and she has mastered walking backwards!
  • She talks to us all of the time. We don’t necessarily know what she is saying all of the time because she babbles a lot still, but she knows how to ask for things that she wants. She has done amazing with sign language!
  • Feeding her has gotten so much easier because she wants to be independent and feed herself. The only problem is that she only has 6 teeth! (2 bottom front teeth and 1 molar on each side, top and bottom). Once she has all of her teeth she will be unstoppable!

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