Tenacity | Lessons from my daughter

A month ago, I shared the Cri du chat awareness video with Emily’s resource teacher.

Emily appears in this video 4 times which, to her, is the equivalent of being a movie star!

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Since she was little, I have allowed Emily to make her own decisions. I have allowed her to fall, to get hurt sometimes, to taste vinegar and lemon juice….. but most importantly, I have allowed her to learn how to make a decision!

Within a couple of days of us having the awareness video, she told me she wanted to present it to her class….

Wow!!!

I didn’t see that one coming.

Emily knows she has a rare syndrome, she knows she is different and she knows that different is awesome because normal is boring!!! 🙂

Sometimes, she is sad about being different… she wants friends and a boyfriend but quickly she’s back being her happy self…

Emily, to my knowledge, has never talked about her syndrome at school.

Where we live, kids with special needs are included in regular class. This means Emily is in a regular 8th grade class… the kids obviously know she is different but I have no idea if they know how much she’s achieved in her life.

Around the same time as Emily decided she wanted to share the video with her class, she was assigned an ELA (English Language Art) project and decided to make it about her syndrome. She decided to make a brochure about the 2013 conference in New York City. We printed all the materials that was available to us and sent it to school with her. She worked with her EA (Educational Assistant) on building a brochure.

Yesterday, there was a note in Emily’s communication book, her presentation date is June 12th 8:30am and she will introduce the awareness video before talking about her diagnosis and her upcoming trip to NYC, including the conference!

I am so nervous right now!

I will be there, I will try to the best of my abilities to make a video of Emily standing in front of her classmates and talk about herself, her syndrome, her reality!!!

I will be there for her if she gets questions that she can’t handle… I will be there for her regardless of how it goes…

Remember my public speaking post…..? How scared I was…. this tops it! This is beyond anything I ever though I would see one day! Between now and June 12th at 8:30am… I have to reach into my drama class experience once again and act as if everything is fine…. as if I am not nervous about this new adventure…

I am not afraid that she will not do well, I am worried about her classmates reactions…

Please send positive energy our way so those 14 year old react like friends to Emily’s efforts and achievements…

Would let your child open up like that to their classmates?

June 18 1998 20:24

Our daughter is finally here! A tiny baby 5 lbs 6 onces …. 18.5 inches long.

She is beautiful! The cutest baby in the nursery! I know every parents think that about their baby but mine was awfully cute!

She had the most perfectly round face with big almond shape eyes. She had a tiny cry while all those other big babies were so loud!!! She had a tiny spot on the back of her head that had no hair, she had a tiny purple spot on her forehead and a little skin tag by her left ear….. Other than that 10 fingers, 10 toes and a cute tiny nose….

Emily was born in the time of breastfeeding madness….. where you “had to” breastfeed. Emily didn’t want to!!! The drinking containers (my breasts) were bigger than she was….. She didn’t latch, she didn’t suck and couldn’t swallow…… My breasts became public properties to the nurses at the hospital….. They all had a different approach that was supposed to make Emily drink….. Well that didn’t work and quite frankly at some point regardless of their good intentions, I couldn’t stand nurses grabbing my breasts!!! MY Boobies!!! Not public property!

The doctors ordered tests and it was decided that her not drinking properly and turning blue while we were feeding her had to do with not knowing how to swallow! We were cleared to go home with our daughter, all we needed to do was take our time feeding her…

Did we ever!!!

You know those babies who drink 8 onces and go for a nap!?!?!? I’ve heard they exist! I believe some of my nephews were like that but in our house there was none of that. No drinking, no napping!

I pumped milk for as long as I could, I started with a manual pump, got on a path to tendinitis so I switch to electronic…. talk about feeling like a milk cow…. not sexy, not stimulating…. but I did it for my daughter! Emily drank maybe 2 onces at the time and to get those 2 onces in her took a couple of hours. Put a tiny amount in her mouth, sit her up straight, put a hand on her tummy, once you felt the sip go down (yes, you can feel that….), sit her up straight and don’t move her……. wait maybe 5 minutes and repeat…. The waiting was to help her keep the milk in. Regardless of how slowly we got the milk in her, she vomited at least half of it……

One day, I will tell you about the time her godmother decided to play with her just after she was done drinking….

Feeding Emily was a 24/7 adventure. We just kept giving her small amount of milk hoping it would stay in, hoping she would keep enough to stay alive!

My house was a mess, I had on-going piles of laundry (all the vomiting) and I was exhausted…. Emily didn’t sleep. She drank, vomited and cried…… She slept maybe 4 hours on 24 hours and they were not in a row!!!

To this day, I am not sure where the energy and tenacity to continue came from….

One thing for sure, by the time she was diagnosed and that the doctors talked about feeding her by tube….. I knew we could keep her alive without it! I knew that it was hard, I knew that the tube might be easier but at the end of the day, I wanted her to learn to eat, I wanted her to learn to use her tongue and cheeks….. I wanted her to developed those muscles so maybe one day she would talk…..! Maybe one day she would say “maman”

When faced with a never ending task, how long will you keep going?