Life lesson | Lessons from my daughter

In our daily life, at home, there is not another person with cri du chat syndrome.

I am so happy for Facebook and the community I have found on-line of families who all have a loved one with cri du chat syndrome.

So today, we talk with Bonita.

Let’s meet Rachel!

1. Can you tell me about your family?

Rachel has an older brother almost 42, a sister who is almost 38 and another sister, Haleigh, almost 23 years old. Rachel lives at home with her dad and I, Haleigh, and our dog, Tally Ho.

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

Our daughter, Rachel was born 10 weeks premature weighing 2 pounds 11ounces. She is a healthy young lady turning 22 in August and is about to graduate from a Transition program that she has enjoyed very much.

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

She was diagnosed with Cri-du-Chat Syndrome about 2 months after she was born and still in the hospital. She started therapy and early intervention programs soon after she came home. Of course she was delayed and used a walker, wore braces on both feet for several years, but she is doing fine now.

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

Rachel is doing well in her reading program in her class and is very outgoing. She loves music, singing, she has a large vocabulary, loves animals and sports.

The Chicago Blackhawks, Bulls and Cubs are her favorite teams.

She was crowned Homecoming Queen at her Transition program dance and also participates in Special Olympics Bowling.

She also loves going to church each week and everyone there treats her so sweetly.

When the doctors first told us her diagnosis they gave us a very bleak sounding future and said we should put her in an institution. It’s amazing how far she has come and how many lives she has touched.

There are times she makes us crazy of course, but all in all, she has far surpassed our expectations, never dampening our hopes.

5. What’s next?

Soon Rachel will become our traveling companion as she exits her program and my husband gets ready to retire from his job. We will all continue our adventures together as long as we are able! We’re blessed to have our older children and their families close by so Rachel is able to spend a lot of time with her nieces and nephews, her grandmother and aunts, uncles and cousins.

She has a great circle of loved ones around her which is a comfort to us. Rachel continues to grow in her knowledge and ability and we believe that as long as we expose her to new experiences she will continue to excel.

Thank you Bonita!

I love the picture of Rachel, she looks really happy and I’m sure Emily would love a tiara like that one!

Lately, my blog posts haven’t been as much about Emily’s syndrome…

They have been about Emily.

Our trips, make-up, fashion, art and so much more…

I didn’t avoid her syndrome…

I just, sometimes, forget about it!

It feels good to forget about it!

Than, out of nowhere, it hits me.

Emily will be 17 in June. If she had been in school in Quebec, like I did, this would mean, going to college in the fall of 2015.

When I was 17, I moved over 1000km away from my home to pursue my studies.

I had a boyfriend and had my driver’s license.

I could manage groceries, pay bills, use public transportation and study hard. I wasn’t a good cook but never starved.

I learned to cook eventually.

So, sometimes, I forget about Emily’s syndrome.

I love seeing her for who she is.

I love remembering our vacations and thinking about the next one.

I love helping her get ready in the morning, helping with her hair and trying to teach her about skin care and make-up.

What I even love more is when I ask if she needs help with something and she says no.

Over the last year, she has learned to put her dishes in the dishwasher, start the dishwasher, makes tea, start her shower on her own, start the washer and dryer, comb her hair and even made her own pony tail…

She played baseball at the Rogers Center in Toronto and slowly started to ride horses without a horse handler 🙂

Her reading is improving and she’s interested in learning how to cook!

This week she started making her bed!

Most of those things are quite insignificant for “regular boring” kids but when you have an exceptional daughter like mine, those are spectacular achievements.

Slowly but surely, she is getting older…

Slowly but surely she continues to prove that her diagnosis of “not walking, not talking, not feeding herself, not showing emotions, not recognizing us…” was more of a worst case scenario rather than a sure fact.

Some new babies being diagnosed with cri du chat syndrome, are still being told about all the things they will never do. Some are being told they will not live to be 1 year old.

I want the world to know about Emily. About her syndrome and about her successes.

My girl is awesome and sometime I prefer to talk about her awesomeness rather than dwell on her (and our) struggles.

It makes me happy and I wish it brings happiness and hopes to parents everywhere. Regardless of the diagnosis, what your child will achieve will bring you joy. Regardless of the struggles, you will find happiness in the smallest achievements if you allow yourself to see them and celebrate them.