Doctors | Lessons from my daughter

I knew she existed

A friend sent me a note a month or so ago, telling me a little girl was born in a city near us. I don’t get notes every time a child is born near us 😳 but this little girl is like my Emily. She was diagnosed with Cri du Chat Syndrome within a couple of weeks of being born.

I didn’t try to find her, I didn’t research her parents. I figured we would cross path soon enough.

Last week, I received a message on our Facebook page from Katherine (the mom)

We talked for a bit and lucky for us, she told me she would be in our city this weekend.

We picked a time and place to meet.

When they arrived we said hello, introduced ourselves than we were like old friends… Even the dad’s were chatting.

I like seeing babies but I don’t hold them. I think I have held or tried to hold some of my nephews but that’s about it… Unless a friend literally put their baby in my arms, I will just look at the baby, talk with the baby but I don’t hold them. I don’t know what to do with babies. I am awkward with them.

I know this sounds rather silly as I am a mom and I have done all the baby stuff with my girl but it’s just not really working for me and other babies.

The babies are cute and smell good but they are not like Emily was…

day1mom

That was until I met this cutie pie!

Love at first sight!

I think I had her in my arms within seconds of introducing ourselves.

I didn’t even think about it when her mom asked if I wanted to hold her.

It felt natural, that must be what other moms feel when they hold babies.

That tiny girl made some little noises, fussed a little and it sent me back 17 years ago. Her mom said she vomited a little earlier which is why they were late and I could relate. She sounded like Emily, she felt like I remember Emily did, she moved a bit in my arms than found a position she liked, she was rubbing her nose on me and that meant the world to me. Emily used to do that.

All those little things, they were my “normal”. She reminded me of my Emily, my baby!

Love at first sight!
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Find more about about Cri du Chat syndrome at 5p- Society

Emily has a her own page in the family stories , you can find it here: Emily

If you have been following Lessons from my Daughter for awhile, you know about the famous elbow to the head.

It happened on October 2nd 2013 and I wrote about here: It’s not nice to hit

Come on, go back and click the link, it will help you follow where I am going.

I rarely write about the downside of having a child who doesn’t quite control her movements.

That hit on October 2nd 2013 did something to me.

To start, it gave me a concussion. I tried to ignore it for a week before the headaches and discomfort made me consult.

It took me 2 weeks before I woke-up without a headache.

By Halloween (29 days later) I was still not well so I treated you to pictures of Emily dressing up. The art of dressing up! Not just for halloween…!

A couple of days later I went back to work but I was careful not to over do it.

Over the following 2 years, I have had what I call concussion headaches, hopping on a plane now means serious headaches on arrival. I asked the dentist if my teeth were turning bad as they were hurting so much but the dentist said they were fine. I consulted various specialists and therapists about my headaches, my concussion, my ears, my teeth and my jaw

I thought I was losing my mind.

September 2015, I was enlighten From concussion to TMJ and embarked on a new recovery path.

My dentist changed my little metal bar behind my teeth to a retainer around that same time.

Within days it was obvious that I clench and lock my jaw overnight which contributes to my headaches and jaw pain.

As of yesterday 29.5 months later, I now have a bite plate to wear at night to help reduce the stress on my jaw and eventually, hopefully reduce the headaches…

I haven’t been on a plane since May, we will see in June if this is still an issue.

I can’t imagine ever riding a roller coaster again as the movements are too much for my brain.

This is my reality.

The reality of many parents out there.

Our kids are not trying to hurt us, Emily never meant to hit me exactly where it would trigger all of this. None of this is her fault but this is my reality.

I rarely write about the downside of having a child who doesn’t quite control her movements because I don’t want to dwell on it.

I try not to think too much about how over the years, I had my hair and nail pulled, I got slapped, pushed, bitten, kicked or hit. How much sleep I didn’t get, how much vomit I cleaned or how many vacation days I spent in hospital or in therapies. I don’t want to know how much money and time we spent on tutoring, sign language classes, PECS system and other therapy equipment.

I don’t want to associate my back pain, my headaches and TMJ with my child so I don’t.

This is my reality and the reality of many other parents of exceptional children!

Recently, I have witnessed parents of children with special needs being verbally attack for taking care of themselves, for mani-pedi, for going to the gym or tanning salon.

To those parents, good for you, take care of yourself, we all need to take care and spoil ourselves for our own sanity and to continue fighting and advocating for our kid.

To those commenting, pointing fingers and verbally attacking these parents please know that when you do that, you attack all of us.

All Of Us!

We are a big family who can be kicked and pushed around but we won’t stop moving forward, we will not stop defending our kids, we will not stop advocating for them and we will not apologize for finding tiny pockets of time to take care of ourselves.