Pick your battle

Over the weekend, Emily and I visited some of my family.

Whenever we go to my mom’s place we try to go for a big breakfast before we hit the road back. We always go to the same place.

“Chez Oeufs”

Emily orders either crêpes or a waffle covered in Nutella and bananas!!! I try whatever combination of poached eggs and hollandaise sauce I can find. This time I had artichokes, spinach and asparagus in my plate!!!

I love food! Breakfast was delicious!

Whenever we go “Chez Oeufs” we always invite anyone who wants to join us. This time we were 9 and I loved it!

As per usual, at one point or another during a family meal or a family reunion the conversation will turn to Emily.

This time was no exception. My little brother’s mother in law was commenting how she took upon herself to educate some of the guests at the christening the day before about Emily’s difference.

She had noticed them looking at Emily and decided to let them know what she knew.

I had noticed them too but was busy keeping an eye on Emily in the pool or getting her food ready or helping her change after swimming and so on…

I know I should have taken time to chat with them but I’m not comfortable doing that so it was easier to stay busy…

I know, that’s a shame but I never said I was perfect!

I should be able to talk to strangers about my daughter considering I write about her right?

Wrong!!!

Back to my story…

D. is telling us how she handled the guest’s curiosity. She did really well and they all marveled at my dedication to my child…

In my mind, I’m not any different than another parent, I just have a different reality…

But apparently to witness me take care of a tired teary 15 year old Emily made me almost a Saint in their eyes… 🙂

Ok, I’ll be a saint for now… 😇

But the truth is, I have no idea how my life would be without Emily and her challenges. I have no idea how to be a mom without being crazy in love with my kid and doing everything I can for her to have a good life.

Most of the time her physical age is irrelevant…

When she was tired and everybody was loud and she didn’t want to be there anymore, she was trying to crawl in my arms to be comforted… In that moment she was closer to 3 than she was to 15 but she still measured 5’7″

My choices were limited on how to handle the situation in order for all involved to be minimally impacted.

I decided that Emily and I would go back to my mom’s place as she had been over stimulated all day. We gave hugs and kisses to all and I kept right by her, telling her softly that we were leaving, that it was ok, that it would be quiet as soon as we would get out of the house.

Emily calmed down slightly as soon as we left.

Did I miss part of the evening? Yes!

If we had stayed, would I had been able to enjoy the evening and fun company? No!

Did I enjoy leaving? Not really!

Did I enjoy seeing Emily calm down, gaining control over her overstimulated senses? Yes

Did I enjoy her climbing to bed and falling asleep without me having to drag her there and repeatedly tell her to go to sleep? Oh yes!!!

To have tried to stay would have made things worst and wasn’t worth it.

Emily has taught me to pick me battles wisely. I’m getting better at it. I sometimes still make the wrong choices but I’m not perfect!

Can you pick your battles wisely?

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The art of not giving up!

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?

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