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…..
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
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Thank you so much for sharing!
Beautiful and inspiring – just like your Emily xx
Thank you! ❤️
A truly inspiring read! Thanks for sharing!
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This is truly an inspiring story even though I had tears in my eyes when I read it. I wish you the the best with your family.
Thank you Kristina. Emily is now 17 and a real joy to be around. We got the know her and took this journey as a family of 3. Feel free to stick around and read other posts. You might shed more tears but you might also laugh! Thanks for reading.
Wow, 17. That’s wonderful.
Reblogged this on Dream Big, Dream Often and commented:
This is an amazing story and great retrospective! Do yourself a favor and read this…
Thank you for posting this. My daughter was diagnosed with Cri du chat at two weeks old last September, she was 7 weeks early and was doing pretty well but suddenly became ill and we fought so hard for her, she died on her 1month birthday of issues relating to her prematurity. We are so proud of her and so lucky to have had her in our lives and are now trying to get on with a happy future made stronger and more appreciative from having held her in our arms. I truly believe this. However we will never lose the feeling of bereavement we felt when finding out about CdC, it is like no other feeling and I truly admire all the amazing parents of children with such an unknown and unpredictable syndrome.
My love and best wishes to you and your family x
Thank you for your comment. I can’t imagine the pain of losing a child.. I am sure in her 1 month in your life she taught you tons of things. Emily’s diagnosis was difficult but with time we adjusted to our new reality. Thank you for reading my blog and I’m sending you positives thoughts and energies.
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