This morning, I was enjoying a nice cup of coffee while surfing on the Top Mommy Blogs website!
If you want to see the website, click on the picture on the top left of me blog site. This will help my ranking and take you to the website to discover some really interesting blogs.
One day, I will figure out how to add a banner at the bottom of my post. For now, this will have to do!
Going back to my morning coffee and reading, I discovered a new blog.
The mom Erin, talks about life with Evan, her son who has Williams syndrome. This morning, I read a post called I didn’t know.
One of her point took me back 15 years ago when Emily was born.
She says: “I didn’t know how hard it would be to be around my friend’s children for a while.”
This is such a powerful statement and I don’t think our friends and family members ever realized how hard it was at first to be around other children.
Look at those 2, they were born 6 weeks apart. The big guy is my brother’s oldest son A.
A was a big baby while Emily was a tiny 5.6 lbs at birth than she lost some weight before slowly… extremely slowly… started gaining weight again.
A was awake, looking around him, curious, playful, he ate well, he kept growing and reaching milestone. He even napped!
My sister in law looked like the mom who had it all under control even cleaning her house while A was napping or sleeping.
Emily was tiny, she did hold her head but that was about it. She wasn’t really curious, she reacted to voice and music, she didn’t eat well, she vomited a lot (multiple times a day), she didn’t keep enough in her to grow properly but obviously enough to stay alive. She didn’t reach any milestone. We were trying to feed her constantly, trying to teach her to suck and swallow… something every baby is supposed to know how to do. Well she didn’t.
She also never slept so a nap was not an option for her. She cried, tried to eat and vomited.
That was our life!
A was calm and growing, Emily was screaming, crying, not sleeping…
My kitchen floor was under a constant pile of laundry and my house was messy.
We didn’t let that many people in our house and going to visit my brother was a reminder of how much of a failure I was.
Not Emily, never Emily!
I was failing my child, my husband and life in general. I should have been able to juggle all of this and make my daughter feel better… after all she was completely healthy, nothing was wrong with her!
We kept going back to our doctor to tell her something was wrong but we were classified as over reacting young parents.
It took us a year to convince them something was wrong.
Whenever we were invited to my brother’s place I felt sick to my stomach.
We were always asked to take Emily for a walk in her stroller or to try to calm her down while driving around when A was napping.
Maybe, it was my imagination but I felt judged based on Emily’s behavior. A behavior, I should add, that she didn’t control.
I didn’t want to go visit them anymore. I didn’t want to visit anybody with or without kids. The ones with kids reminded me how their reality was so far from ours, the ones without kids kept telling me how to handle Emily’s behaviors because…. well young adult without kids always know so much more than anyone else…
When my sister-in-law got pregnant with Z everybody was so happy and suddenly it was all about us again…
When will you have another baby? It will help Emily grow… It will be good for you….
By that time, we had a diagnosis of Cri du chat syndrome! If you don’t know what it is, you should go see some of my previous post here:
Introduction to Cri du Chat syndrome
Back to the need for us to have another baby! Fo so many people out there who knew little of our reality, it was evident we needed to give Emily a sibling.
To anyone who said that, I offered to come spend a week with us and see if they could find where and when we would have time to take care of another baby.
I had zero takers!
I have to admit that we distanced ourselves from the constant reminder that our reality was different than others.
We missed out on getting to know 3 great kids. Not just because I couldn’t handle it but also due to us moving farther away… let’s say going from a 1 hour drive to a 10 hours drive will help distanced yourselves.
The good news is? It got better.
As Emily got older, we enjoyed getting to know her, we figured out that if we held her really tight she would eventually fall asleep (not because we were cutting her airways or anything like that….) but because we were blocking an onslaught of sensory stimulation coming at her…
We slowly learned on the job how to help her grow and learn.
When my little brother started is family, Emily was 5. He and his wife lived only 6 hours or so away from us and we got to see N. more often. Not as much as we would have liked but still more than we ever saw A, Z and G.
Everything that was painful 5 years earlier now brought joy to us. To look at his big eyes, to see him grow and learn. To see him walk. All those things are amazing.
They have now added 2 more boys N#2 and F to their family and it is the same. I look at those boys and although I see things we will never experience with Emily, I still see the miracle of life and enjoying every minute of it.
Over the last couple of years, we have had the chance to get to know A Z and G a little better. It is still strange to see what they are into and comparing with where Emily is at but I can see them for who they are and see my daughter for who she is.
They are perfect, our 6 nephews and our daughter, they are all perfect in their own way.
The picture below is missing F the youngest, he was still in a perfectly safe belly at the time of the photo shoot!
I pretty much know I must be part of the “young adults without chuldren” you mean. I appologize 15 yrs later
For anything I have said that felt offensive or inapropriate to you. I can imagine what you must have felt like. When I tell people about Julien ´s heart problem at birth etc, everyone always says ” but he is ok now” or ” but look at him today!” Yeah maybe… But I profoundly hate hearing that. It was worse than hell for me. And it may take me years to get over it, but I am allowed to cry when I hold or see a new born. Feels like life stole these precious moments from me. And even if hés awesome now and his heart is healed, I am allowed to still feel this way. ;). Bonne nuit mon amie xx
Sweetie! Regardless of all your flaws 🙂 you were far from being one of those… Trust me! Next time we get together I’ll drop names and you will feel much better about all this. You were there for me and you were one of he few we would trust with Emily. Love you lots! And yes, you are allowed to feel everything you are feeling about your precious son.
again so poignant .I feel so guilty now for not understanding and being ( or try to be helpful)
Congrats on your award . You deserve it
No need for guilt. We never said anything back than as we were learning how to live in our reality. Now, I can write about but that was 15 years in the making.
I know that the early years were hard as you were learning and discovering the kind of parent you needed to be for Emily; however, what a blessing that it opened your eyes more than most that sometimes different behavior isn’t a reflection of parenting or of the child. That’s a lesson that I don’t think enough parents/non-parents ever learn.
Thank you! I’m far from perfect but I do try to keep my eyes and mind open.
Thank you so much for your comments on my blog. I apologize for taking a while to respond and reciprocate. I am going to read more about Cri du Chat today. I totally agree that things DO get better and we are only about 15 months from E’s diagnosis. I will be sure to add your blog to my list of daily reads. I look forward to keeping up on your family.
Don’t apologize. I will be keeping up on your blog as well. I really enjoyed what I have read so far.