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!  

πŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œ

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

When tenacity becomes stubbornness

Like mother like daughter….

On a good day, Emily is determined or tenacious! On a bad day, she is pigheaded, inflexible or stubborn!!!

Just like me!!! Her dad is like that too but it’s my blog so I will take responsibility!

All 5 words, determined, tenacious, pigheaded, inflexible and stubborn are synonyms… the first 2 have a positive vibe while the last 3 makes you think about a difficult child!

All 5 words are the same!

A strength (determination) over used becomes a weakness! This is true at all ages!

When looking at Emily, I know that her determination helped her learn to walk, talk, eat on her own and do so many other things.

Her inflexibility have made her stomp her foot in the middle of a store when she thought a dress my mom and I liked was hideous!

πŸ™‚ My daughter!!!

October 2001, Emily is just over 3 years old when the daycare informed us that one of the little boy had meningitis… All the kids had to take a preventative antibiotic.

The syrup was disgusting…. I’ve always tasted (still do) everything before I give it to Emily so I am better prepared for her reaction!

As I suspected, Emily hated it and decided that she would not take it!

As a baby, Emily had issues swallowing and choked a lot. She developed an amazing ability to remove whatever was blocking her air ways on her own. My baby would start suffocating and could loosen up / vomit on demand…. still can!

At 3, we couldn’t really discuss with her the importance of keeping that syrup in. We got more from the pharmacist and kept trying to give it to her….in juice, yogurt, fruits, pudding and more… We tried many times and she made herself vomit every single time…

She is one stubborn child!

The pharmacist wasn’t selling us anymore antibiotics… he seemed to not believe in Emily’s ability to detect the antibiotic in food and expulsed it…..

We had to take Emily to the hospital as we were getting nervous about her not getting the benefit of the antibiotics as well as not keeping food or liquid in her body.

We went to the hospital 3 days in a row.

The first 2 days we were sent home after being looked at like over reacting parents…

On the third day, I packed for an over night stay for all 3 of us.

We got to the hospital, explained (once again) that Emily was exposed to meningitis, that she refused to take the antibiotics and that she stopped eating and drinking. She was not herself, she was dangerously dehydrated…

Again, we were judged by the nurses and labeled as over reacting parents.

But this time the nurses tried to get a urine sample and got nothing.

The bag they glued onto Emily stayed empty long enough for them to slightly panic and decide to go in with a little tube to collect a sample straight from her bladder. When that didn’t work, the nurses went on full alert. Emily was dehydrated, she needed to be transferred to another hospital. They wanted to put her in an ambulance while we were to go home to get personal items.

Yeah right, I wasn’t leaving my girl.

We told them not to worry about us, that we had our backpacks in the car and that all they had to do was call the hospital that we would drive there.

When we got to the next hospital, they were waiting for us.

Emily was put in isolation because of the meningitis exposure.

They needed to install an  IV to hydrate Emily.  She was a tiny 3 year old.

They had the audacity to ask me to hold her while they were trying to put that needle in her. I refused. I refused to be the one holding her down while they were hurting her. I was and will always be the one comforting her, not the one holding her down!

They poked her multiple times before finally installing the IV on her wrist.

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I had told them not to touch her right hand, that she needed to suck on her finger to fall asleep but they didn’t listen to me.

I noticed bandages around both of her wrists and ask what they were for..

They planned on attaching her to the sides of the bed at night so she wouldn’t roll on her IV…

That’s when I became determined, tenacious, pigheaded, inflexible and stubborn… all at once!

There was no way they were going to do that.

They took away her right hand and wanted to have her lay still at night while being attached to her bed…

Anyone else see something wrong with that picture???

I stayed awake all night, holding her left hand and hoping she would fall asleep.

I did that for all the nights we spent there and would have done it for many more.

We spent Halloween at the hospital, nurses and volunteers were disguised and brought us some items to help Emily dress-up.  By this time she was no longer being kept in isolation so we pushed her around in a high chair (she wasn’t walking yet) and let her collect candies she couldn’t yet eat.  We allowed her a sucker which made her sick, this showed us she wasn’t ready to be off the IV and come home.

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She eventually got better and we went home!

Like mother like daughter!

On a good day, Emily and I are determined and tenacious! On a bad day, we are pigheaded, inflexible and stubborn!!!

πŸ™‚
I am so very proud of that because when she drives me crazy, all I have to do is think about her ability to walk, talk and do so many other things…. that ability came from her determination and tenacity.
Can you recognize an over used strength in your kids?

πŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œ

If you like to read about Emily and would like timely updates of little and big things happening in her life, you should follow Lessons from my daughter‘s page on Facebook.  This is where I post tidbits of information before I have time to write a proper blog post.  Some stories might never get a full blog post!  Join us there too!

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

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