Wednesday, December 1, 2010

november was MY month

near the end of october, i went to dinner with some dear friends i've met through rett syndrome. these friends are all mothers who have girls near leah's age who also have rett syndrome. 

as i sat at the table looking at these three lovely women, i was amazed. they all seem so on top of it. they seemed to understand the lingo and knew of all sorts of services and therapies to ease particular burdens. waivers and medical and respite and ekgs and eegs and ieps and mutations and deletions and geneticist this and neurologist that. 

i was overwhelmed. 

and once again, i was certain leah came to the wrong mom. i can barely remember her birthday and the fact that i'm supposed to take her to the pediatrician once a year. when i have an overwhelming to-do list {most of which i don't even understand}, i tend to take a back seat. instead of slowly trudging through the list, i retreat. i do nothing. 

and that's what i've done since march. since the first rett syndrome research study we attended. there was so much to do, i didn't even know where to begin. i even retreated in october after the second study and additional to-do list. 

on the hour-long drive home from dinner, i chatted with one of these lovely ladies whose particular strength is organizing, understanding and advocating for these kinds of things. and together we decided that november was my month. 

we got a list together of the first things i needed to do. once those were done, i could peek at the rest of my list, but first things first. she gave me tips on what i could say when i was on the phone. she helped me to better understand what certain things were and what they could help provide.

and you better believe, november. was. my. month. 

i think i accomplished everything on my list. everything. some are recurring and some require follow-up, but i accomplished everything i set out to accomplish. yay me! 

here's a sampling of what was on my list {in addition to my regular daily activities of chauffeuring, cooking, cleaning, exercising, church and more, mind you...}:

*call dr. c to schedule eeg 
{to see if leah has any sort of seizure activity that we are unaware of} - 
check. scheduled for later this month
*call dr. m to schedule ekg 
{because girls with rett syndrome have a higher likelihood of something called long qt syndrome, which is potentially life threatening} - 
check. 
scheduled for friday, then rescheduled for next week. mixup at the scheduling desk. :)
*call dr. g 
to update medications, change address and ask about eeg. 
check. 
*remember regional center case manager's name. 
check.
*call case manager at regional center 
for an application for respite, 
an application for medical 
and information about a the institutional deeming waiver 
and diaper services. 
check, 
check, 
check.
*purchase basic assistive technology devices 
for leah to use at home and at school. 
check. 
*research water therapy. 
check. 
{and i found out that what i was doing with her at the pool all summer long was just as good if not better than the outcome we would have had from a professional water therapy session. yay! go me!}
*research hippo therapy. 
check. 
{i've researched. 
haven't called, 
but last night as ryan was riding around the living room with leah on his back, 
i couldn't help but think this hippotherapy was just as fun and rewarding as a real horse?} 
still on the list, though. 
*attend c's iep. 
check. 
and since she's 5 now, i got some great ideas for attainable goals for leah's 4 year iep coming up in february.


i still don't remember leah's mutation {don't hate me erica}. i know it has a p in it - and p's are bad because they don't bend. and when it comes to dna, you want it to bend. but i also know leah has two mutations, not just one. she's one-of-a-kind, that's for sure. 

i'm still learning. 

hoping to get some choice cards made to use at home and research some eye-gaze computers. i got a great tip of a lady in the area who might be able to help us attain a computer through our private insurance. um, can you say amazing? 

there's a lot more to do, but i'm so proud of myself for sticking with it. i even got a fun package sitting on my doorstep one day in mid november from this same mom who gave me the guts to begin with. c, you're the best. thanks for believing in me. 

november really was my month.

p.s. remember how leah was to gain a pound a month from october through march? she's up 2 lbs. go me.

8 comments:

Erica said...

man that C! always sending the nicest little gifts!
and I dont hate you for not knowing leah's numbers and letters-remembering 2 is a lot!

Jen said...

Go Maren! I HATE making phone calls. I would have hid from them too. . . for probably just as long, or longer. Way to be November!

JourneyBeyondSurvival said...

Ugh! I swear it's a full time job just to handle the appointments, follow-up, therapy, and application of recommendations.

Insurance bills, claims, prescriptions, are another story.

No wonder my house is a wreck!

TWO POUNDS?!?!?! It's time to throw an all nighter! Go leah! Go YOU!

Colleen said...

2 lbs. go you!!! So proud of you, I knew that you could do it and I am honored to be included in the story.

Brad, Debbie, and K squared said...

I know we all have different trials, and no ones is "harder" than anyone elses, but honestly, I think you are amazing for getting through this each day. I have an irrational fear of calling people, so I especially give you a big pat on the back for all of those phone calls!

Karen Hauley said...

No one . . . NO ONE . . . would be a better mom for leah bean.

rachel said...

Congrats Maren! Great work!!! That first part reminds me of the scene in An Ideal Husband when Rupert Everett has tons he could do and instead he decides to go home and do nothing at all. I think about that scene a lot when I feel overwhelmed.

carolee said...

Way to Maren! You're amazing girl!