friendship | Lessons from my daughter

UPDATE April 18 2015: Peyton is getting her bike!!!

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Do you remember how it all started?

I mean my blog… 🙂

Emily was excited about going to New York to the Cri du chat syndrome conference and decided to tell the world about her syndrome. She made a presentation at school and I started writing this blog.

My way of sharing how Emily has been inspiring us daily.

When we finally made it to the conference, we met incredible families.

One on them is Peyton’s family.

That little girls stole all of our hearts from the moment we met her. Peyton’s smile and ability to walk and dance was so amazing to us. I couldn’t stop looking at her. Haley was attentive and caring for her younger sister and Jeff and Kelly appeared to be looking at Emily as much as we looked at Peyton. Such an inspiring little girl.

They are truly a beautiful family and today, I want you to meet them and share this post as much as possible so in the near future, Peyton can ride her own bike.

1. Tell me about your family!

My husband Jeff and I have been married for almost 13 years, and we have two beautiful daughters. Haley is eleven and Peyton is five.

Of course we don’t lead the typical life. I feel like our lives are constantly in fast forward, but that’s our “NORMAL”, so that’s ok.

Jeff is a truck driver and I’m a nurse, so between work and family life we have very little spare time!

Haley is in sixth grade and is a wonderful big sister. Peyton adores her!!! I love to see the bond that they share, and I pray that the bond grows as they get older!

2. How is Peyton doing?

Peyton is doing absolutely AMAZING!

We have been through many struggles since the time she was diagnosed back in 2011.

Like many CDC parents, we were told that Peyton would never walk or talk. We wanted to be sure to get her every single service and therapy she needed.

For two years, I fought nonstop with our local school district for an out of district placement because the program they had was not appropriate for Peyton. We hired an advocate and an attorney, and I basically learned every single law myself.

We won, and Peyton was placed in the greatest educational placement. We were left to battle the district year after year.

The district was only offering to pay for a one year placement. We chose to make a really hard decision and sell our home and move into the district where Peyton’s school was located. This way, she was guaranteed all she needed. Needless to say, Peyton has grown leaps and bounds. She started school, only being able to verbalize 10 words. Now, she is up to over 200!

She is in an integrated classroom with typically developing role models. It is just what she needed to learn and grow. She plays and interacts with the other children, can count 1-10, can sing her ABC’s, knows all her colors, and the days of the week.

Oh, and most recently, she can recite the letters to spell her name! The other day, she began SINGING a song that was on the radio! I cried! We are so blessed!

3. I’ve seen your Go Fund me page to get Peyton an adapted bike. I’ve look at those way back for Emily, they are quite expensive. How are your fundraising efforts coming along?

Yes, the bike is just about $4000 with all the modifications that Peyton needs.

The Go Fund Me Page for Peyton’s adaptive bike was created two weeks ago. We have raised $2,400 and have also received a few private donations as well.

Two great friends of mine are also hosting their own fundraisers for Peyton so we can reach our goal to order her the bike. We are so grateful for all those who have supported our special little girl.

Note from Pascale: this is the page, every penny counts, if you can help Peyton get her bike, please do so. If you can’t afford to help, please share this blog or share her go fund me page on your Facebook! Pedals for Peyton

4. I see pictures of Peyton and videos of her and I think she’s just an amazing girl. Can you tell us about her therapies?

Thank you so much! Peyton has been receiving outside therapies for 2 1/2 years and has PT, OT, Speech for an hour once a week.

In school, she receives PT twice a week, Speech three times a week, and OT three times a week. School also works on feeding therapy as well. She also goes to aquatic therapy with her entire class, and that is by far her FAVORITE!!!!!

We also play music all the time for Peyton, and that calms her immensely. She still loves to dance and SING! She really loves putting on a performance for others!

5. Is there anything else you would like to tell me?

I wanted to thank you for taking the time to get to know Peyton and our family. I am so thankful that social media has connected us with so many families.

The conference back in 2013 was amazing. We felt like our lives were NORMAL for once. No judgment, just lots of encouragment, tears, and laughter.

I remember seeing your family and thinking ” Wow! I hope Peyton is just as successful as Emily. That child is so inspiring.”

Now I’m tearing up…. I should have read this part before starting to put it all together. Thank you Kelly for your kind words.

I believe that all of us as parents need to push our children to the limit, no matter how grim those medical professionals portray our children’s diagnosis to be. Aggressive therapies are key along with multimodal communication.

Peyton continues to use sign language, picture symbols, her Ipad and spoken word to communicate. And I believe that her verbal skills have improved significantly.

When all of us received the news that our children had CDC, we felt the same feelings of hurt and sadness.

My worse fear was fear of the unknown. As the years have passed, I try not to dwell on those things. My priority is to push Peyton to the limit, to be sure she receives all she needs to be successful, and most importantly to be HER VOICE until the end of time.

Pedals for Peyton

Let’s get that gorgeous girl a bike :). She deserves it!!!!

Over the weeks, my interviews have been about some families we’ve meant and others that we haven’t. This one is about a young man who without saying anything captured my daughter’s interest.

Look at them when they met in 2013!

Hi Tammy!

Thank you for taking the time to do this!

1. Can you tell me about your family?

My husband and I have known each other since we were in Jr High School and have been together 27 years and married soon to be 25. Allan is our oldest and will turn 25 in June and he has 2 younger siblings a sister 22 and a brother 11 years old. Allan and his sister share a very close bond with one another and he adores her and she him. As a parent it really is wonderful to see. We are a very close family. My husband has been very supportive from day 1 with Allan’s diagnosis and has always been a hands on dad. Our family does not see Allan as having a disability when we see him we just think of him as Allan, And we never assume he cannot do something and we include him in everything we do.

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

Allan is a very happy guy. He loves to laugh and joke around. He always has a smile on his face. Allan loves sports of all kinds. He is a huge fan of Football, Baseball and basketball. He loves to play basketball and always has since he was a young kid. He played on his first special league basketball this past season and really had a blast and did a great job. We were very proud. Allan attended his school from age 3 and left as he aged out at 22 and it was a very positive experience. Soon after he started his Adult Day Program which took some time adjusting to after the loss of his grandma and having to get use to a whole new school and staff after 19 years at 1 school. So it was a challenge in the beginning but he has adjusted very well lately. Allan has always loved his sleep from an early age. And we count our blessings in regards to that. You will catch him napping often.

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

Allan never really had to see the Dr much over the years he generally does his annual physical and blood work outside of that he is a very healthy guy. He does suffer allergies from time to time but that is about it. Growing up Allan attended all the normal O/T.P/T and private speech sessions as well as got the services through the school district. And as he got to be older we discontinued the O/T AND p/T and concentrated more on the daily living skills and work programs. Allan does attend a work program at this time through his adult day program and is doing very well as long as his coach is there to assist him .

4. Tell me a success story.

Wow its so hard to think of just one success story because in our eyes Allans entire life has been a huge success story and he has beaten all the odds that were given to us when he was diagnosed after birth. Allan is very independent at home and able to do quite a bit for himselfand that is a huge milestone to us.

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

As a parent of a older adult son I would want all the new parents of newly diagnosed sons/daughters to know that there is life after the diagnosis. My biggest regret was when I look back and wish I had not let myself be consumed with the diagnosis the first year. I had kind of a pity party. I was afraid of the future. I concentrated so much on what the books said Allan would do or be that it made me depressed. Luckily I had a great support system and I finally told myself that we were going to do everything possible to ensure he could grow up to be the best he could possibly be. Allan would grow up having a family whom supported him and loved him and believed in him. I knew we had to believe in him in order for him to believe in himself and want to have the will to achieve. And so I stopped having the poor pity party and stopped asking why me? Why Allan? And that is when I was able to finally start finding some normalcy through the diagnosis and after the diagnosis. And now here it is almost 25 years later and I am so very proud of my son. We celebrate all his birthday milestones doing what we feel someone that age would do. Such as when he turned 21 we took him to Las Vegas for a week he gambled he saw all the sights he went dancing . Or when he had his special graduation we rented him a limousine to celebrate the occasion and went to dinner and he had the time of his life. So I do not dwell on the things he will miss out on because as long as I am alive he will not miss out on life. I take him traveling he attends concerts we enjoy life to the fullest. And at the end of the day it makes our family as normal as it possibly can be.