Wednesday 29 August 2018

Mommy Diaries: Coming to Terms With a Diagnosis

Meet Lindsay.    I am lucky to have had an opportunity to get to know her through our book club over the past four years.  She is one of the most humble, honest, no non-sense kind of girl.  She says what she means, and means what she says. She is truly an extraordinary mom, friend and human being.  Lindsay will be a regular here on Mommy Diaries for a few extra segments. Love her to pieces.  

Coming to Terms With a Diagnosis

Looking back, my daughter, Isla, was different right away. But at the time, we didn’t notice a problem until she was 10 months old. I’ll spare you all the details but a little over a year later, after seeing multiple specialists, having done multiple tests, crying over the phone to get her into therapies and a hospital stay, we found out she has Rett Syndrome. Google it, it’s super crappy. The year that followed the diagnosis was a weird ride and a super emotional roller coaster. One that makes you sick and sometimes black out. One that refuses to stop and give you reprieve.  No, no, all you can do is get used to it.

Grieving for a child with disabilities is a confusing thing. When you are grieving a death, its definitive, there's no questions about what the future will look like without that person in it. Grieving a child with disabilities, makes you feel guilty for grieving because you love your child more than life and despite their setbacks, you think they are perfect, how can you grieve that? The first 3 months were a blur. I literally don’t remember anything other than laying in bed, nursing my baby and just crying and crying and sleeping. Rett Syndrome very quickly consumed our family.

First there’s the questions.  What did I do to cause this? How could this happen?! Then came the all consuming search for answers. Google, facebook, anyone?! Tell me what my child’s life will be like! When your baby is born, you take for granted the path they will likely assume. You know that they will more or less meet and pass milestones, they will be potty trained, will go to school, grow up and eventually move out to start their own adult life. Most people worry a little but mostly assume this is how things will go. You know what a derailed train looks like? That’s kinda how it feels finding out your daughter’s life will not go like at all. Suddenly you have to come to terms with the fact that she will need 24/7 care for the rest of her life, like an infant. This is a much more loaded thought than you’d initially think…..
  • There’s the heartbreaking question of who will die first? If she does, my heart will break. But, if I do, who will take care of her?!! We only have 2 kids, my older daughter may have to bury us all and then she will be alone! 
  • Then you wonder, will we have to move, this house can’t accommodate a wheelchair?! 
  • What will my career trajectory be now?? 
  • How do you change an adult in a diaper who’s non-ambulatory on an airplane or in the grocery store?
  • Are we getting her all and enough of the right services?! 
And then there’s the services… So many great things available but well, have you ever seen Labyrinth (with David Bowie)? Ya, it’s kinda like that. I had to get a bigger calendar to fit in all the appointments. It’s so frustrating to have experts tell you why these therapies are so important to implement early but then the system tells you you have to wait in line. Rage.

Others will tell you that raising a child with special needs it’s important to take care of yourself and your marriage. Sure, makes sense. Too bad you usually need to figure that out the hard way. Tell that to the mom who is just trying to put one foot in front of the other.

All that being said, step by step and with the help from a strong community of friends and family (and some pharmaceuticals) the journey is getting easier, a path forward is being revealed, there's even a little hope. It all just takes time.


  1. Thank you for sharing, Lindsay. I hear you on the 'taking for granted the path you assume they'll take'- while our diagnosis is different, it is still something that is going to cause me worry. Sigh. Thanks again for your words.

    1. Always good to know you’re not alone. Everyone is on a different path but many are similar!

  2. Thank you for sharing your difficult courageous. heart felt story, Lindsay.
    Isla has a beautiful mother and family.

  3. Oh my goodness. I wish Lindsay, Isla and the whole family so much luck in dealing with this.

    1. Isn't she just a pillar of strength and love?