Education | Lessons from my daughter

Whenever I have a chance to let the world know about my girl, I seize it.

I wish more opportunities would present themselves but for now, I will embrace what is there as I truly don’t have the time to go out and create opportunities.

Earlier this year or late last year, Emily was asked to be part of a calendar, to raise awareness for Cri du Chat syndrome

You can find Faces of Grace Organization on Facebook

For the month of January, you get some facts on Cri du Chat Syndrome

Cri du Chat (Cat’s cry) syndrome, also known as 5p- (5p minus) syndrome, is a chromosomal condition that results when a piece of chromosome 5 is missing. Infants with this condition often have a high-pitched cry that sounds like that of a cat. The disorder is characterized by intellectual disability and delayed development, small head size (microcephaly), low birth weight, and weak muscle tone (hypotonia) in infancy. Affected individuals also have distinctive facial features, including widely set eyes (hypertelorism), low-set ears, a small jaw, and a rounded face. Some children with cri du chat syndrome are born with a heart defect.

And the model for the month of October is non other than Emily!
I bought many calendars and shipped them to friends and family!

If you are in the US and would like a calendar, I beieve there are still some available for purchase : Here

If you are not from the US (like me) you might need to arrange with the person on the facebook page to get a calendar. 100% of the proceeds go to the 5p-society.

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NEW!!! We have a facebook page: 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.

You can also find me on Twitter at @plebrass

I am on Pinterest too: Lessons from my Daughter

I just discovered StumbleUpon but I have no clue what to do there: I believe you can find me under plebrass but I need to spend quality time there.

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

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I have been thinking about this post for a long time.

The evening of October 6th 1999, after we received Emily’s diagnosis of Cri du Chat Syndrome, I was destroyed. I hung-up the phone and curled-up on my bedroom floor crying.

Jonathan was in shock, sitting in the living room chair where he took the same call.

Sometimes, I think about those new babies being diagnosed, I imagine their parents in similar state of mind as Jon and I were.

I wish I could tell them that it’s ok to cry.

Just cry, get it all out.

Hug your baby. He or she didn’t die with the diagnosis but who you thought your baby would be did. Give yourself time.

Remember to be gentle with yourself, your spouse and your baby. This is happening to all of you.

You are stronger than you ever imagined.

Don’t read so much about the diagnosis. Get to know your baby first.

You will have a lot of time to learn about the diagnosis, you will be submerged in information, you will meet many doctors, learn lots of new words and attend a lot of therapy sessions.

Take notes, if you or your spouse can’t attend an important appointment, bring a friend. It’s amazing how even when 2 people attend the same appointment, they don’t remember the same things. Years later, do this for school meetings too!

Feel free to remove negativity from your life. Yes, this includes Facebook and other social media.

Your family is your priority. Your family includes yourself, take time for you and allow your spouse to do the same. Find time for each other too.

Remember to be a couple.

Trust your gut. You will be the expert on your child’s “everything”. Even when you will have no clue about what is happening, you will be the expert! Trust your gut.

You will become your child’s support team, nurses, doctors, therapists, advocates and so much more but above all that, you are your baby’s parents, you are a couple, this is your family!

The diagnosis will change your life. It will be difficult but it will be rewarding. There is no book written on this, you will write your own story as you go.

Celebrate every single little thing. Find what makes you, your spouse and baby happy and celebrate away.

Laugh until your tummy hurt. Be silly, every chances you have otherwise the seriousness of the situation will suck you in and that’s no fun at all.

LOVE yourself, your spouse and your baby.

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