Good night!

Over lunch one day, the guy sitting to my left was talking about his son’s bed time routine.  When he was done, he took time to tell me that his son his mildly autistic and that his routine and his need to ask the same question over and over again is comforting to him. 

I smiled and told him that I understand that.  Emily has Cri du Chat syndrome and her bedtime routine is extremely important. 

Up until a year ago, she was sleeping next to me, in my bed, every single night. 

IMG_3287I gave up on trying to make her sleep in her room 12 years ago when she was 5. 

12 years of elbows, knees, cold feet and an extremely warm body plastered against me. 

12 years of cuddles. 

12 years of going to bed with her in order to hold her until she fell asleep. 

I knew some medication could help her but I picked cuddles over drugs. 

A year ago, out of nowhere, Emily said she was going to her bed and she did!

Back to her routine!

I asked her tonight if I could write about it and she said yes. 

Emily gets ready for bed on her own, she changes in her pajamas and brushes her teeth. 

Than we get her room ready. 

Extra pillows and cushions go in a specific order in their special spot. 

We plug her phone in our room (we changed that recently as when it was in her room she was playing with it in the middle of the night)

We start the floor fan (summer, fall, winter, spring). 

The blind needs to be pull down completely, no light can enter the room 

We turn the tv and dvd off, set a DVDs box in front of the dvd player to block the lights and set the remotes I front of the box. 

We turn the ceiling fan on. 

Emily jumps in bed and says she’s freezing. 😜

She lays down in the same comfy spot in the same exact position every night. 

I give her the 2 babies who always sleep with her and their baby blanket. 

Next, it’s blanket time. 

First, her “horse” fleece blanket than her bed sheet, than her duvet, followed by the Toronto Maple Leaf fleece blanket, the Justin Bieber fleece blanket and finish is all with the princess fleece blanket. 

In that order 365 days per year. 

Once she’s under this pile of blankets, I jump on the bed, on Emily 😜 and hug her. 

I sing “soft kitty” while tickling her nose with my hair and/or rubbing behind her ears. 

After the song, I get up and say good night to all the pretend friends, humans and pets in her room and we go over the rules

There are 6 rules for the pretend friends and some rules have sub-categories.   This takes a couple of minutes. 

Once it’s all said and done I say good night and walk out while closing her door and making sure all the hallway lights are off too. 

If we are interrupted, we need to start again at the song 😳. 

The guy at the lunch table, from the beginning of my story, felt Emily’s routine was more complicated than his son’s. 

I felt their routine was way more complicated than Emily’s.  

Emily’s bed time routine is awesome.  We get her room ready than set her up to have a great night’s sleep! 

I couldn’t think of any other way for me to have great sleep!  

Good night!  

💜💜💜💜💜💜💜💜💜💜

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

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