Life lesson | Lessons from my daughter

It’s Sunday night and Emily asked me to watch the Billboard Music Awards with her.

So here I am, on the couch, feeling slightly guilty for having spent the last 2 days sitting around, enjoying my family, watching Netflix and eating.

Tomorrow is a holiday in Canada… Tomorrow will be laundry, cleaning, organizing and everything I should have done already.

Maybe I can start writing about our trip to Florida… I have so much to tell you.

But for now, here is my newest interview.

Let’s chat with Amy

1. Can you tell me about your family?

We are a family of 5. My husband Jay and I have Colin 17, Nellie 15 and Braley 11. Nellie has CDC. We live in upstate NY. We are a busy family, always on the go. Our children are all involved in sports and that takes a lot of our time

2. Tell me about your loved one with cri du chat syndrome.

Nellie is super sweet and has blessed our family in ways we could never have imagined. She has taught each of us about being kind, patient and understanding. Nellie attends a life skills class at our local high school and she knows everyone. She enjoys many of the same things that all 15 year old girls enjoy. She always has her iPhone in hand, loves music and you tube. She enjoys her bike riding and swimming. She plays on 2 basket ball teams, baseball, football and bowling. Most of her sports are played through our local miracle league. She also spends a lot of time playing littlest pet shops. Above all I would want to tell you that Nellie is a gentle, sweet, very funny, well behaved little girl who is adored by all who know her.

3. Tell me about doctor appointment, therapies or school.

When Nellie was little our life was a whirlwind of doctor & therapy appointments. We saw every type of specialist imaginable. Nellie was sick as young child and spent a lot of time in the hospital. She had open heart surgery and palate surgery. She had a spinal fusion done at age 13 for scoliosis. Now, at 15 she is very healthy and rarely even gets a cold. She had failure to thrive as a baby so weight was always a big issue but she outgrew that too. Nell has always had a ton of therapy and I believe it made all the difference. Speech has always been a big issue so she has always had speech every day, she has taken sign language since she was baby and still has a sign teacher at school, she speaks pretty well but we always wanted to give her every opportunity to communicate. Music therapy was fantastic for Nellie. She has also always had PT & OT. She gets all her therapy through school and they are amazing. She works with her high school class for 2 hours a day at different local businesses. I have to say that playing sports, Sunday school and Girl scouts were all important too.
4. Tell me a success story.

Our CDC are always amazing us so it is very difficult to pick one success story. A few stick out. 1. Getting the training wheels off her bike. 2. Learning to read! She can read hundreds of words, thanks to finding the right reading program for her. 3. It may be strange to hear a parent say this but being able to use a iphone. It gives her a way to communicate with all of us. I feel so much better knowing she has a phone with her to reach me. She knows how to use a smart phone better than I do. She keeps it charged and is actually really responsible with it. And it is typical for her age!!!!

5. What else would you like the world to know?

I would like people to know that with a lot of support these children are capable and will continue to amaze us. We were so lucky to have access to great therapy & medical care. I never believed in the “it takes a village theory” but I do now! Without wonder teachers, therapists, programs & doctors I do not know where Nellie would be. We have also been blessed with a loving & supportive family. We could never have gotten this far without “our village”.

Thank you Amy for taking the time to chat with me.

Here is Nellie and her brother before homecoming dance

Back in March, I told you about a school assignment where Emily had to talk about a random act of kindness.

You can read about it here: Random act of kindness

At the time, we couldn’t come up with an example as Emily doesn’t interact with strangers.

Over the last week, while we were away on an amazing vacation, I tried my best to let Emily be Emily.

Some people stared, some people didn’t even see us as they were absorbed in their own vacations, other people shared in our happiness and a small group were touched by random act of kindness.

I followed Emily’s lead.

She’s an awesome kid!

Here are some of the things we did.

1. At Harry Potter’s park, Emily couldn’t make her interactive wand work. She tried, I tried, Jon tried but we couldn’t do it. A boy probably 12 or so was looking at us… Holding a non-interactive wand and he looked like he wanted to try but his wand wouldn’t work. He gave Emily some pointers as he had been looking at other people… She looked at him and asked him to show her with her wand. His face lit up. He did it perfectly on the first try. He gave Emily back her wand, his mom discreetly thanked me and we went on our way. Emily probably made his day.

(I will tell you what happened to Emily’s shoe in another post)

2. We randomly offered to take pictures for families and couples.

3. We chatted with a 6 year old boy in line for an attraction. He wasn’t paying attention to the line and kept walking into Jon but instead of losing patience, we talked with him and his family and when he decided to join in on our family hug we let him. He was a wonderful little guy who happened to have Down Syndrome. He was friendly and just wanted to chat. He probably get stared at too so this was nice for him and his family as well as for our family.

4. We had dinner in Japan at Epcot. A family from New Jersey sat next to us at the Teppaniyaki table. They all looked at Emily at some point… Not sure if it was her voice or overly tired look… Emily was exhausted. We ate too much and planned to skip dessert even though it was included. The family sitting next to us with 2 kids on children meal plans were given the dessert menu and picked 4 desserts. When our server came back, I confirmed no desserts for us as Emily and Jon were already outside watching fireworks. The father ordered the desserts for his whole family just to hear our server tell him that those were the adult desserts. The kids could have ice cream. Dad was disappointed but asked for chocolate ice cream. They only had vanilla. He picked vanilla… I felt so bad for him. I remembered once, being offered ice cream or jello while adults were offered all the cool desserts. (I’m sure my mom could tell you all about my not so pleased with the rule reaction)

I don’t know if they couldn’t afford the extra cost of getting them the desserts they wanted… The dad looked so disappointed, the son wasn’t paying attention. The mom and daughter were in the restroom. I told our server that I had changed my mind and wanted 2 of our desserts. The 2 the kids wanted… I asked her to bring the desserts to them. The dad was so happy and when the mom came back from the restroom he told her all about the ice cream fiasco and how the nice lady (me!) took care of their desserts.

(That’s Emily after dinner 😴)
5. While trying to take pictures of Emily and Jon riding Splash Mountain, I took many pictures of many strangers. The lady next to me, ran out of space on her phone just when part of her group of students came down. I had pictures of them so after I got my pictures, I found her, showed her the pictures I took and asked for her email. I sent her the pictures today. I’m not sure if she truly believed I would be emailing her 😀

6. We distributed Mickey stickers to random kids. The doorman at the hotel kept giving them to us so we shared them. One little girl held her Mickey sticker during the whole Nemo play at Animal Kingdom.

7. Still at Animal Kingdom, we kept seeing this family. The son was probably 4 or 5 and was in a stroller. The little girl was younger and running around. At lunch, we ended-up sitting next to each other, I don’t think they ever noticed us but I saw them. I saw them put a helmet on their son before taking him out of his stroller for lunch. I saw the parents play tag team making sure both kids got all they needed. I saw people staring at their boy wearing an helmet to have lunch… When our server gave Emily 2 pictures of Donald-Daisy-Mickey-Goofy. I asked Emily if she would give one away to make someone happy. She picked that little guy. She went said hi and asked his mom if she could give him the picture.