There’s always time for hugging

As soon as Emily was born, I wanted to hold her and cuddle her.

I loved her so much.

Even when she was crying and vomiting 24/7 with 30 minutes of sleep here and there, I wanted to hold her and cuddle her. I wanted her to feel safe and loved.

When she was being looked at by various specialists to determine what was “wrong”, that feeling of wanting to protect her from everything grew even stronger.

I adore my girl!

I grew up with a mom who loved us fiercely while at the same time teaching us to fly on her own. Teaching us manners and responsibilities while hugging us and saying “je t’aime” at least twice a day.

My mom taught me how to be a mom 💜

I talked to Emily constantly about everything and told her how much I loved her as often as I could.

After we were told that she would never talked, I started having conversations with her about everything I was doing and about what I did at work. I talked to her, held her in my arms, cuddled with her and said “I love you” many many times per day.

For conversation, I would give her choices for answers and would look for reactions to help guide our chit chat.

As Emily got older and started interacting more but still with limited words, I continued these conversations with her. Always using the real words to describe things or events. Never using baby talk.

I remember coming home one day when she was 5 or 6, I was trying to hide how sad I was as I had learn that day that a young man I worked with had died in a tragic accident. I sat on the couch, Emily next to me, she looked at me and started to pet my heads. Looking at me with empathy in her eyes, hugging me.

Empathy, was one of those complicated feelings my daughter wasn’t supposed to ever show…

Over the years, Emily has developed quite a vocabulary in English and a fair amount in French.

While in tutoring, she was known for her extensive vocabulary. 😊

Last month, on the eve of her 20th Birthday, Emily sat on the couch next to me and looked at me with tears in her eyes…

That night, she said, “mom, you are my favorite person in the world” ❤️

So I asked her why…

“For believing in me… You know, when the doctors said I would do nothing, you never gave up on me”

She sat there, crying gently while I tried to figure out what to say, I was lost for words… I told her that she was worth it and that I love her so much that there is no way I will ever give up on her.

She slept cuddled in my arms that night and I loved it even though she’s 20.

I still tell her how much I love her daily, I hug her as much as she wants and cuddle with her as often as she needs it.

When she needs a hug or a cuddle, I stop whatever I am doing and hug her.

I never let go first, I hug her until she’s ready to let go.

Yesterday, as I walked out of the bathroom, Emily was standing there waiting for me.

She looked at me and said: “do you need a hug mom?”

I needed a hug… for a handful of reasons, I needed a hug badly.

She hugged me and didn’t let go until I was ok.

When I asked her how she knew, her answered was simple.

“My heart”

This is only a fragment of Emily’s story and I’m so glad to be a part of it!

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 want short updates and timely pictures of the little things that are happening in our life, please like and follow Lessons from my daughter‘s page on Facebook.

You can also find me on Twitter at @plebrass

If you haven’t had a chance yet to see some of Emily’s artwork, please go see her Facebook page, if you like it, please hit that like button and share it with your contacts, friends and family.

Emily’s Hopes and Dreams

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The 3 calls that changed how I see life!

Reposting – Originally written in May 2013!

This post is one of my longer post but I feel it explains so much about who I am!

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Some of you know this, others don’t!  It took almost a full year for our family doctor and pediatrician to agree that something was different about our daughter.  A year of being told that we were over reacting young (23 and 25) parents…..  A year of us trying to feed our daughter, a year of no sleep….

Just before her first birthday, our doctors agreed that something was wrong.  The first comment to it was “your daughter will never walk she needs to see a neurologist”  And with that, we were sent home to wait for an appointment….

I didn’t sleep well that night …

I cried a lot….

Our first meeting with the neurologist came not too long after… many thanks to whomever canceled their appointment that week as the waitlist to see a neurologist was over 12 months long…

Welcome to Canada, our health care system is free but sometimes you need to wait a little…!

Our neurologist was amazing, many tests needed to be performed to understand what was going on with Emily so we scheduled the tests and she told us to reach out to our families to see if there could be a history of genetic disorders…

My husband is adopted so his reaching out involved a whole other world which is his and not mine to talk about.

My family is really close regardless of how far we are situated geographically.  I called my mom who got me the number for a cousin which I knew had a heavily handicapped baby boy who did not survived for very long.

This was call #1.

To this day, I think of that call as the moment where a realized that it didn’t matter what happened. I was going to be a great mom, I was going to love my daughter and do whatever it took to be sure that she had the best life ever.  I was going to help her reach her full potential, I was inspired.  How can someone who lost her precious baby boy could inspire me so much is still a mystery.  She was at peace, they did everything they could and were ready to do more should their boy had been able to stay with them longer.  After the call, I wanted to be just like my cousin, positive and at peace with life!

On my father’s side, I have a cousin with an severely autistic daughter, she was diagnosed before autism was known!  I had spent time with them and their daughter on multiple occasion, she was lovely but busy!  My cousin always seemed to be an amazing dad to her and her little brother.  My cousin’s wife seemed overwhelmed and a little disconnected. She wanted to talk to me and I was avoiding the conversation.

The phone rang one evening, this was call #2.

I didn’t want to take the call but I was raised properly and I wasn’t going to hang-up on her so I listened to her story and when I have a bad day, I go back to that call.  The gift I received that day is not something someone can buy.  That evening, when I could finally hang-up the phone I looked at my husband and told him that I had just received a picture of what I didn’t want to become…  Overwhelmed, stressed, negative, upset, feeling like myself and my child were failures…. FAILURE!!!!  Never, would I allow that to be me…. Never would I look at my baby girl thinking that she failed me, that the fact that all my dreams for her were not coming true would be reflected on her…  I would go back to call #1 and adjust my dreams, I would celebrate all the small milestones, I would laugh and love…..

September 1999

We lived away from the hospital and when we went to get the tests results, the DNA (blood work) wasn’t ready.  We got a lot of other results that day….  We needed to schedule a MRI to complement the scan and we had to get started on PT and OT to stimulate our daughter.  ENT, cardiologist, urologist and many more specialist wanted to see her…  slightly overwhelming but at least we were in good hands.

October 6, 1999 – Call #3

We got the call after work, the genetic testing results were in.  Emily has Cri Du Chat Syndrome, she is missing part of her 5th chromosome…  Jon and I are on the phone, listening to the doctor but I can’t hear anything, I am getting words here and there but my brain is numb, my stomach hurts, it feels like I have been stabbed (not that I know what being stab feels like but it can’t hurt more than what I was feeling at the time!)

I asked only one question, “Does it means that she is handicapped?”  The answer : “Yes, permanently and severely”

I was destroyed, lying on my bedroom floor crying…  my mom was visiting that week, she brought Emily to me and told me that regardless of what that phone call was about, that Emily was still my baby girl, she was the same little girl from before the call and that now we would know how to help her!

I LOVE MY MOM!!!

That day I cuddled with my little girl and promised her and myself that I would be like that first cousin!  That day, I went from being a 24 year old to being much older than my age…..

That day I decided that anyone wanting to drag me the wrong way or anyone wanting to suck the life out of me by being negative, high maintenance or what not would be cut-off!

To this day, I have lived up to it, I have cut people off, I have told others that if they didn’t adjust their vocabulary or jokes repertoire that they would not be allowed in my life….  I have surrounded myself with love and understanding!

I have adjusted my life to my daughter’s challenges……. Thanks to 2 really different phone calls.

Gifts come in all kind of packages, can you recognize them all?

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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 want short updates and timely pictures of the little things that are happening in our life, please like and follow Lessons from my daughter‘s page on Facebook.

You can also find me on Twitter at @plebrass

I am on Pinterest too… one day I will figure out what to do there other than finding cool recipes but meanwhile, you can find me here: Lessons from my Daughter