Education | 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

I know it’s not the weekend but I’m always excited to share interviews with all of you!

So today, we meet Olivia!

1. Hi Meredith, can you tell me something about your family?

We are a family of 4. Myself, Julio,Sophia (13) and Olivia (11). We are a multiracial couple. We have been married for 14 years. We recently moved from Indianapolis to buffalo to be closer to family for support.

2. Can you tell me more about Olivia?

Olivia is an auburn haired, green eyed beauty. She is an incredibly happy child. She is very tactile. She was born at 37 weeks at 2.69 kg. she spent 2 weeks in the NICU. I breast fed for 7 months but she had severe reflux and was struggling with weight gain. She weighs in now at 61 pounds and is right at 5 feet. She has multiple genetic abnormalities. 5p 15.33 to 15.2 which makes her a Cri Du Chat. She also has a duplication at 5p 15.2 to 5p 12 and a duplication on her X chromosome Xq 21.1. She also has a diagnosis of CP. She has scoliosis which was noticed at 11 months and it got to 90 degree plus and she had surgery at age 8. She is nonverbal/nonmobile. She does make vocalizations when happy or irritated. We currently have no formal communication. She is happy 98% of the time. She is classified as severe/ profound and considered medically fragile. She started having seizures at age 8. We are just starting to try an eye gaze communication device. We hope to find a way that she can express her wants. She is super skinny but can walk in a gait trainer.

3. Can you tell me about doctors or therapies or school? How are things since you moved?

Since we just moved last August from Indy to Buffalo I am still finding the right doctors for Team Olivia. In Indy we were spoiled to have fabulous doctors from Riley hospital and St. Vincent hospital. I miss them. I look for doctors that are knowledgable , compassionate , up on current medical trends and have a sense of humor. If they are condescending or don’t realize we are a team than they have to go. I love her new school called the CHC in Amherst NY. It is a wonderful school for children that are severe/profound or medically fragile. They truly understand the needs of children like Olivia. Currently all therapies are done through the school. We will pick up outside therapies. Transitioning to a new state and getting Medicaid was beyond a nightmare.

4. Tell me a success story!

A success story would be when Olivia was around 6 a doctor said he did not believe that she would walk based on her current lack of response when sitting and failing to catch herself. She would just fall. Last year her Riley PT told me that she believed Olivia would walk. In a gait trainer, but she believed she could. I just went to her IEP for next year where her teacher told the home school district that Olivia is now walking in the hall ways. We measure Olivia’s advances in very tiny increments, most people would miss them.

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

I would like the world to know the challenges we face cannot even be conceived by the typical family. We have spent too many nights in ER’s and hospitals unsure that our child was going to make it, yet we go on. We smile and do the polite nod to passer byers. We are tired, lonely and depressed behind closed doors. Our lives are scheduled between feedings, medications and doctors appointments. We don’t get the fabulous vacations and our retirement dreams are gone. We worry about our child’s future and who will care for them when we are gone. We worry that people will be cruel to them or hear what they are saying within ear shot. We struggle to find balance between their needs and the needs of other family members. We love our children completely, if given the choice to have a do-over and a life without them and it’s struggles, we would choose them without hesitation .

Well said Meredith!