Check out that faccia! I mean – seriously…. she’s just the best.
Even when she doesn’t sleep at night.
Even when she goes through yelling spells.
Even when she refuses to listen to me.
She comes home to me tomorrow night and I’m bursting at the seams to see her again!
Many of you know that I love the show ‘What Not To Wear’. I’m so sad it’s ended. I miss Stacy (aka my cousin Miriam) and Clinton and their words of wisdom…
But I stumbled across a few other souls, from a totally different realm, who have REALLY useful wisdom which has helped me feel less alone, less questioning of myself (I’m always wondering if I am being too sensitive) and more empowered.
This special needs parent thing is a whole new world for me. And likely, it’s a new world for you too (likely because of me). So I want to share with you a few links which may help you better understand, better communicate and better support me (and my L) on this journey of ours.
Happy Reading!
What you SHOULDN’T say to a Special Needs parent:
http://www.womansday.com/sex-relationships/friendship/special-needs-children
What you SHOULD say to a Special Needs parent:
7 Things you don’t know about a Special Needs parent:
http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html
Hi family and friends,
It’s been a challenging few weeks for me. That last hospital visit really took the wind out of my sails. I’ve been struggling with a cold/cough/exhaustion for a while now. But I’m doing my best to stay healthy. I even started putting bentonite clay in my water for additional minerals and support (you may think I’m crazy but it is helping me). I need all the energy I can get to keep up with Lily, who is being VERY opinionated and active these days. She is SUCH a toddler. But all of this is excellent, excellent news.
She and I have been doing a lot of reading (‘The Wheels on the Bus’ is her current favorite book) and her word approximations are mind-blowing. Yesterday she said ‘horsie’, ‘piggie’, ‘birdie’, ‘ready’, ”ommy’ (for mommy), ‘omlette’, ‘berry’ ‘bay’. Mind-blowing. This kid is going to talk. I am convinced of it.
The other thing which has been keeping me busy (on top of work, managing Lily’s calendar and giggling with Lily) is helping to organize Rett fundraisers… (You all know that I’m eventually getting on the board of either the IRSF or the RSRT one of these days!). Here are a few upcoming events which I’m putting my energy behind:
‘Reach for the Stars NYC’, taking place in TriBeCa on April 24th. From the Team Lily contingency, I will be there, as will Grandma (who is making a guest appearance from Florida), Leslie (one of my besties from grad school who is coming from Toronto on her way back to DC) and a slew of other friends. It should be a lovely evening – cocktails and canapés at a beautiful venue. If you’re in the NY metro area, I’d LOVE to see you there. You can either view the invitation to the left or click here.
‘Strollathon Hoboken‘ is taking place on October 5th and I’m gathering a team of work colleagues (to get my Company’s financial support), family and friends to come and walk to raise funds, and awareness of Rett Syndrome. FYI – we may be organizing a Team Lily family and friends party after the walk. More soon on this (I’m in the process of creating a webpage for the event)! For you relatives outside of the NY metro area, put this date in your calendar!
‘Reverse Rett NYC’ is taking place at Capitale in Manhattan on November 3, 2014. I have a meeting with the executive director or the Rett Syndrome Research Trust this week and it’s likely I’ll be a member of the organizing committee.
I really do hope to see you at any one of these upcoming events. It would mean so much to me, and to Lily.
Sending love and joy (and a few pics from over the weekend),
C & L
the Janis Joplin look (the 60’s), the bobby sock look (the 50’s), and the valley girl look (the 80’s)
On Monday, three young girls (between the ages of 10 and 14) died from complications due to Rett Syndrome. I’ve been struggling with this all week. Mourning for these sweet girls. Mourning for their families. Mourning for everyone in the Rett Community.
I try so hard to stay positive about Lily and her diagnosis. But when you get hit (it felt like a punch in the face actually) with the news that 3 girls died in one day, it is not easy.
I bought three bouquets of daffodils for these three girls and have them prominently displayed in our kitchen/living room. To bring sunshine and happiness to me and Lily and to the memory of these girls.
It makes me feel selfish to take all of this so personally, but then I remember that this is part of the reality of my child’s diagnosis. And I also realize that Lily is different from each of these girls. I don’t know their stories, their struggles, their giggles. Maybe their Rett was on the more extreme end of the spectrum. I don’t know. And I didn’t want to look into it further as I pretty much put my head in the sand and walked away from FaceBook on Monday because of this news.
When I feel stronger, I’ll reach out to the Rett community to find out more. But for now, I’m just going to hold my baby extra tight and sing all the songs she wants so I can hear her beautiful giggles.
Below is a photo of Lily playing with her beloved Maureen, one of her many therapists who visit us each day.
She’s going to be 3 years old and has had 3 different diagnoses. The last one (Rett Syndrome) combines the first two (autism and ESES, pre-epileptic activity) and adds a few more. But regardless…. she’s still the best. Ever.
We are heading to the hospital tomorrow and will be there for her birthday, but will celebrate it in style. As always.
Check out her profile here:
https://www.rettsyndrome.org/news-and-media/irsf-features/featured-angel
And there is NO need for gifts or anything of the sort for her birthday. If you feel so moved to do something, you can always make a donation (large or small) to the IRSF. They’re amazing and have been so helpful for us these past two weeks.
https://www.rettsyndrome.org/make-a-difference/donate-now/donate
Love,
C and L
blueberriesandgiggles 