love | Lessons from my daughter

passun

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.

💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜

Did I miss anything?

💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜

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

February 29th is Rare Disease Day

In my own way, through writing about our experiences raising Emily, I continue to spread the word about Cri du Chat Syndrome (CdCs)

I do my best to share experiences that are positive, fun and inspiring. I don’t shy away from writing about struggles but I will always respect Emily’s need for privacy on some more personal topics.

Did you know…

Only 1 in approximately 50,000 born will miss that tiny part of their 5th chromosome…. chances of knowing or meeting another child with CdCs are really small.

Emily was diagnosed before facebook, the information available was outdated and scary. It took us 15 years before we met others with Cri du Chat Syndrome.

Now with facebook, association and blogs, our reach is far greater and parents find up-to-date information much faster.

That being said, it is essential to increase awareness to promote acceptance for any child with special needs.

I would love for Emily’s blog “Lessons from my Daughter” to reach as many people as possible…

Would you help me by sharing this post? Please help Emily and I raise awereness for Cri du Chat Syndrome!

Thank you for being part of our journey!

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