Memory lane | 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

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!

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?

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