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!
Tomorrow is a very big day.
It’s the day that we discuss the kinds of special services Lily is going to need in preschool. I’ve already presented the district administrator (decision-maker) with a letter from the Rett specialist emphasizing the need for certain services. Thankfully he complied with much of what was requested. And he agreed to the preschool location, and to the classroom size. BUT. But…
There are additional things that MUST be put into her IEP (individualized service plan for those of you not familiar with special needs lingo) which have not yet been granted.
It pains me as a mother to push for my child to have hour after hour of therapy. I want her to enjoy preschool and to learn to socialize. I am grateful for the NY Early Intervention program she’s participated in these past (almost) two years but it definitely lacks in the social skills enhancement category. It is all one-on-one instruction (and for Lily, that means 30 hours of one-on-one instruction). Preschool is going to be fantastic for her as she is such a curious and smart little person and is definitely interested in others. But she can only take it so far as she can’t speak (yet). And she doesn’t have great hand use. So – imagine trying to have a conversation or bond with someone when you can’t talk or use your hands. My sweetie.
I digress. Where was I? Oh yes. Basically tomorrow I need to advocate for Lily to get A LOT of services. A lot. Which means that she will be getting pulled out of the classroom many times, on a daily basis, missing so much of the socialization (and beauty) of preschool.
I want my sweetie to relax and enjoy and not have to work so hard all the time. But I know that if we don’t keep up with all of her therapies (and then some), she will regress. We see it every few weeks when the therapists try to pull away from a program which Lily has mastered to get her to learn something new. A few days, or weeks later when we go back to the old program, she can’t do it. She has to be retaught. These programs are things like shaking a maraca, brushing her hair, going up and down stairs.
It is heartbreaking. But Lily always relearns it. Relatively quickly.
Hence the need for intensive, constant services. I wonder when, if, it will ever end for her. We’ve been so lucky with her therapists that they are so loving and kind and make learning fun (most of the time). I pray that this will continue through her school years.
I pray that we find a cure soon so she won’t have to struggle so much.
And please say a prayer (or send a positive vibe – whichever you prefer) my way tomorrow as I’m feeling really sad that this meeting even needs to happen.
Love,
C and L
Preparing for preschool. Learning ‘quiet hands’ while watching Zac Effron (her favorite).
Me, tomorrow.
A few months ago when I was in London, I had a chance to catch up with a dear friend who has had her fair share of struggles. Over tapas and red wine, we talked about how life can be both beautiful and brutal at the same time. Hence, the word ‘brutiful’. I can’t take credit for this word. Another mommy blogger came up with it. But wow – so fitting. And so true.
The past few years, and especially months have been both of these things – beautiful and brutal. Every day I watch my sweet Lily and am amazed at how loving and kind and sweet and smart and resilient she is. And then I get bogged down with her diagnosis – the seizures (she had her very first seizure last week), the fears of when/if other Rett monster symptoms will poke its head out, the struggles she has to deal with on a daily basis. It is brutal. And it knocks the wind right out of me.
But then I look at my little girl and shake myself out of my gloom and remind myself that she has so much potential. And she is perfect. Just as she is.
I have been accused of being overly optimistic about my sweet angel. But this is not the case. I am well aware of the gravity of this diagnosis. But I refuse to live my life in a state of brutality. I choose to focus on the hope, the potential, the beauty.
Cousins – one of the greatest gifts from God.
Her second-most favorite place to be; the first being her mommy’s lap.
Wow, last week we were social butterflies, entertaining guests and party-hopping. Not so easy for this introvert. Lily is the outgoing one on this team.
On Thursday morning, I brought L into the office for ‘take your kids to work day’. She charmed everyone from the CEO to the mailroom clerk. And it was very obvious that she wasn’t interested in a desk job (see below).
When we got home from work, Grandma was there! She had just arrived from Florida and was staying the weekend. When the elevator opened to our apartment, Lily ran to her and immediately gave her hugs and kisses, like no time had passed.
Thursday evening, after Mom, Leslie and I returned from the Rett Fundraiser (which was both lovely and bittersweet), Lily decided that she wanted to have a party too. So she entertained us all by doing her Lily thing – giggling, dancing and giving plenty of kisses.
On Friday, we met up with one of Lily’s therapists for a playdate at Bounce U (a huge indoor bounce-house/playground). HOLY COW. I’m not sure who had more fun, me or her. Seriously, we were both laughing and bouncing and giggling so much. L (and I) had to take a 3 hour nap when we got home!
Saturday night was party-time in Greenpoint with the Salerno’s. Earlier in the day, Lily had somehow figured out how to turn on the photobooth application on my computer and so we made sure to take plenty of pictures with our family. As you can see from the shots, someone was having a very good time.
We have yet another busy week. Yesterday was swim class (she did awesome), tomorrow we go in for the assitive eye gaze technology evaluation (more soon on that), and Friday we visit one last preschool. This is all on top of her 30 hours a week of in-home therapy. I’m not joking when I tell people that she’s busier than my CEO.
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)
blueberriesandgiggles 