Busy weekend

When Emily was little I worried about her future.

Emily15mo

To put this in context, you need to remember that in October 1999…

Just days after the picture above was taken…  Genetic counselors a at the Montreal Children Hospital told us that due to Emily having Cri Du Chat syndrome, her future meant…

No walking!

No talking!

No understanding us!

No showing emotions!

No eating solid food!

At no point did they say this was a worst case scenario.

There was no doubt in their mind that this was going to be Emily’s life and we could see them feeling sorry for us.

We decided to give Emily the best life possible and that we would adjust to her needs and limitations.

This past weekend, was busy…

We had a roofing company over, putting a new roof on our house…

Meanwhile, Emily was starting her Cheer fall sessions.  It was time to talk goals and prepare a lesson plan She loved cheer this past summer so she’s ready for more.  Remember this picture?IMG_2820

An hour after cheer was done, Emily was at her baseball’s team end of summer game and party.  

  Emily and all her team mates got team jackets!  How cool is that?

  We had 39 players this year, divided into 2 groups.
We concluded Saturday with attending a hockey game.

Sunday morning, Emily was volunteering at her riding club. When coaches are tested to move up in their certifications, they need riders and Emily wants to help.

  

Emily helped coaches from other clubs on Sunday and they loved her 🙂

We had a busy weekend!

None of these would be possible if it wasn’t for amazing people getting together and wanting to provide opportunities for kids with special needs.

Thank you Cheer Olympia

http://www.olympiacheerleading.com/mobile/en/

Thank you Field of Dreams

http://monctonfishercats.com/fishercats2015/index.php/field-of-dreams

And thank you Cavalier riding club

http://cavalierridingclub.weebly.com

You are amazing and although I was grateful for this busy weekend to be over, I am even more grateful for the opportunities you are giving Emily and many others.

Thank you to your board of directors or owners and thank you to the volunteers who give their time, energy and positivity.

All of you, are part of our family now!

In the coming weeks, I will share more about Emily’s riding club as she starts her fall session this week and I will let you know more about Emily’s baseball team and our fully accessible baseball field project…

Interview with Nessa – Let’s meet Alexia!

You might not know this but my weekly interviews are allowing me to meet great families.  We all have cri du chat syndrome in common… We have it or love someone who has it.

We read and comment on Facebook post but we don’t all know each other. We live all over the world, we can’t meet for coffee but we meet on-line. 

Today, we chat we Nessa!

Hello Tessa!

Can you tell me about your family?

We are a family of four. Alexia is my first born, she was born with CDC. Alexia was hospitalized after she was born because she had a hard time sucking, breathing and swallowing. Lexi was diagnosed at 2 weeks old. Both me and dad had her at a young age so it was alot for us to take in but we handled it all well. We also have our second child who is 5 and has no disabilities. Alexia soon to be 18 will be graduating this June. I am a very proud mom. 

  

Tell me more about Alexia

Alexia is a none verbal teenager and is wheelchair bound. Alexia does walk with a walker and adult support but she tires out fast. Last year we started useing a trike with her to exercise for legs. She loves her bike. Alexia when she was younger up to 2008 has been prone to pneumonia. In 08 she had spinal surgery and had rods put in her back. 

Can you tell me about doctor appointments, therapies and school?

Her primary doctor has been wonderful. Alexia doesnt get outside therapy it’s been a problem getting her outside services. School on other hand cant wait for her to be finished they dont understand her needs or her disabilities. They treat all the kids the same. 

Tell me a success story 🙂

 If we hadn’t done the spinal surgery who knows how Alexia health will be. Im thankful to Shriners hospital Mr Masso who push the surgery on me. Alexia is a healthy girl and she is doing great. Yes she still has some breathing issues but nothing like she had before. So I’m thankful. 

Anything else you want the world to know. 

I would like the world to know that no matter these children disability they are very bright. They are just like all other persons in this world who wanna be loved. Cri du chat is just a name not the person. Cdc child are very special just as all others are. We are proud parents. And i also feel we have to raise awareness everyday so people can recognize that yes there are other syndromes. We, as 5p- family members, have to do just that.

I saw from your Facebook that you have a gofundme campaign going on. Would you like to tell me about it?

Sure. We are trying to raise money to get a modified van for Alexia. Right now I have a tiny car and she is getting big.  Alexia is long and she likes to lean alot so we got her a hardness seatbelt. But I still have to pick her up and carry her in and out of the car.  I also take apart her wheelchair everytime. Its worse when it rains.  I looked into getting a handicap ready van but we cant afford it. Its really 5,000 but im not greedy. I have already passed it over twice cuz we have not raised enough.

A van for Alexia

  

Than you Nessa. 

I had to get in and out of our car until she was 4 and started walking on her own. My back will never be the same… I can’t imagine my back would have survived doing this for almost 18 years!  

I hope you will find a way to get your modified van.