Awesome appointment with
neurology team at Sick Kids today. Seizures are common with Angelman, but not
absolute and so far Marlowe is seizure free! Amazing. I was also comforted when
Dr. Minnassian assured me that Marlowe will walk. W-A-L-K!! I've yet to hear
that definitively from any of the doctors or therapists we've worked with for
the past 11 months. He also said she will be toilet trained (!!!) and will
always be happy. It still blows my mind that joyfulness is a 'symptom' of Angelman. Amazing amazing amazing.
Movement4Marlowe
Mothering a special girl with Angelman syndrome.
Wednesday, 12 November 2014
Wednesday, 2 July 2014
Good things groooow in On-ta-ri-o!
We celebrated Canada Day picking strawberries and we've been gorging on them all day! Marlowe has slowly increased her tolerance for solid food and happily joined the fest.
Swallowing and feeding problems are common with Angelman syndrome, but since we've started movement therapy, Marlowe has improved both gross motor and fine motor skills -- including swallowing, self-feeding and reaching (notice her berry stained hands).
We are so close to reaching our goal! Thank you friends for your contribution. It takes a village and you're all here.
Wednesday, 25 June 2014
When did Rehab become a bad word?
A friend just emailed asking to meet for lunch, "I assume you're tied up in rehab but thought i'd ask..." Rehab?! I cringed at the reference. But why should that word bother me? Why do I feel shame with the association? Perhaps Rob Ford is to blame.
Clearly I need to reframe & reclaim the word. Therapy is an acknowledgment of what is; it's a vulnerable request for help. There is no shame in that.
So in response to the question. Yes, we are in rehab this week and Marlowe is responding so well!
Clearly I need to reframe & reclaim the word. Therapy is an acknowledgment of what is; it's a vulnerable request for help. There is no shame in that.
So in response to the question. Yes, we are in rehab this week and Marlowe is responding so well!
This journey is opening my eyes and challenging my perceptions. I'm grateful for the teaching.
- 30 -
Click here for the Movement4Marlowe campaign.
Tuesday, 17 June 2014
Goodbye Om
*originally published on my old blog. reposted here to kick off my new one.
I left the world of PR four years ago, but old habits linger. The first draft of this post read like a standard issue press release, “Om Home has announced that Toni Brem Mullen has decided to leave the company to pursue other projects….” Meh. Here’s the more vulnerable truth.
For the past year, my head and my body have been disconnected. My body was telling me something – typical eating, sleeping issues – but I was numb to the message. I was exhausted and overwhelmed, yet still embraced the chaos that three kids and a new business wrought – I was “leaning in” and loving it (high-five Sheryl Sandberg!).
But then something shifted.
Three months ago, my daughter, Marlowe, was diagnosed with a genetic deletion. Of her twenty-three chromosomes, she’s missing chromosome 15, the maternal one. This is called Angelman syndrome, and if you’ve met Marlowe you’d agree, she’s absolutely angelic.
I left the world of PR four years ago, but old habits linger. The first draft of this post read like a standard issue press release, “Om Home has announced that Toni Brem Mullen has decided to leave the company to pursue other projects….” Meh. Here’s the more vulnerable truth.
For the past year, my head and my body have been disconnected. My body was telling me something – typical eating, sleeping issues – but I was numb to the message. I was exhausted and overwhelmed, yet still embraced the chaos that three kids and a new business wrought – I was “leaning in” and loving it (high-five Sheryl Sandberg!).
But then something shifted.
Three months ago, my daughter, Marlowe, was diagnosed with a genetic deletion. Of her twenty-three chromosomes, she’s missing chromosome 15, the maternal one. This is called Angelman syndrome, and if you’ve met Marlowe you’d agree, she’s absolutely angelic.
As Marlowe is learning to connect with her body, I’m learning to re-connect with mine.
*
I was inspired to partner with Oorbee Roy after taking a course called the Landmark
Forum. I left the course talking, as my husband often teases, in the language
of possibility. Working with Oorbee on the development of Om’s Kids Collection,
I wanted our products to be about more than just fabulous patterns. I was tired
of walking into a store and seeing products so rigidly merchandised boy vs
girl. I wanted our stuff to enable kids to just be, free to create their own
possibilities, without the framework of expectations that can come with
gendered products. I’m sure Oorbee thought I was ca-razy.
And now with Marlowe, I’m still inspired by possibility. The words we use, just like the clothes we wear, tell a story, create an expectation. Language is powerful. I’ve caught myself sharing with friends about how I worried as early as two months that something might be wrong. Wrong? I’m much more careful with my words now. Nothing is wrong with Marlowe. She is just different. Aren’t we all aspiring to be special?
Marlowe may never communicate with many words, but she does communicate – I hear her delight as she begins each day with a cuddle from her brother Charlie;
And now with Marlowe, I’m still inspired by possibility. The words we use, just like the clothes we wear, tell a story, create an expectation. Language is powerful. I’ve caught myself sharing with friends about how I worried as early as two months that something might be wrong. Wrong? I’m much more careful with my words now. Nothing is wrong with Marlowe. She is just different. Aren’t we all aspiring to be special?
Marlowe may never communicate with many words, but she does communicate – I hear her delight as she begins each day with a cuddle from her brother Charlie;
I see how her body shakes with excitement when daddy comes home from work; I feel how her body relaxes when I stroke her face. There is so much light and love in her. And when I am sad, and look into her glorious blue and golden eyes, it’s as if she's telling me, “Don't cry, Mommy, I am ok. Everything is perfect.” And she’s right.
So, goodbye, Om Home. I’m so tremendously proud of what Oorbee and I have accomplished in the past two years, two of the longest/shortest years of my life. I often look at photos parents have shared and marvel how real this business is. Two moms had an idea and against all odds it resonated.
Thank you friends for supporting us. Thank you, Oorbee, for the opportunity. And thank you to my perfect little girl for helping me see clearly.
It’s ok to feel sad – I’m very sad to
walk away from this business, but through this sadness I’ve opened myself to
joy.
Toni
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