Tuesday, October 26, 2010

no. 26: i wish i never HAD to meet them

dear little leah, 

today my thoughts take me to some wonderful people. wonderful people that i wish we never met...or i wish we never had to meet. but i'm ever-so-grateful we did. these wonderful people are our rett family.

if there's one good thing that has come out of this whole rett mess, it's most definitely the people. we've known these families for six months, at most. many, much less than that. some we've never physically met, we've just gotten to know them online through blogs and other media. and yet we feel so connected. like we've known each other for years. and we've known each other well. 

some live rather close to us. some are very far away.

some are old. some are young.

some of them have girls who seem a lot like you. others, not so much. some girls can walk. other's can't. some girls have feeding tubes. others eat food just as you do. some have seizures. some have heart problems. some hyperventilate and hold their breath...and then some turn blue and pass out. some have balance issues. some are constantly wringing their hands and mouthing. some need braces on their arms. some need braces on their legs. some need wheelchairs.

but all of these families have one thing in common and that is that they are living with rett syndrome every single day, just like you. just like us.

each of these families has a love so deep for these sweet girls that nothing will stop them from giving their girls the best.

these families have provided emotional support for me. one mom who lives locally told me just a few weeks ago that dr. mary, the dr. at the clinic we go to, told this other mom about us last december. she warned the mom that this new mom {me} might not be ready to talk just yet. and she was so right. i needed some time to just be. to let the news settle. to mourn. to let some dreams die. and then i was ready to jump right in. and when i jumped, this mom was there to greet me.

some families have provided great friendships. just knowing other families know what goes on from day to day - and can see your behavior and not think it's anything unusual - is a wonderful feeling. i never have to explain myself. i never have to answer questions. i can just be.

some families have provided encouragement and the umph i needed to really get involved. these families dedicate their lives to the rett syndrome cause and it's really admiring. they work for rett syndrome organizations. they are up to date on the latest and greatest research and medical advances. they organize strollathons and fundraisers and other events to raise funds and awareness.

some families have provided a relief for the future. seeing these families function - and function well with multiple children {older, younger, boys, girls, small gaps, large gaps, doesn't matter} has been comforting and encouraging.

some families have provided practical, useful information. things to help you out with your communication, supports for school, ideas for therapies, help with questions about eating, sleeping, breathing, walking, falling, anything-else-you-can-think-of - these guys have the answer.

some families have provided the knowledge i need to jump through the medical and insurance hoops. they know how the regional centers work. they know the questions to ask. they know what's available and how we should go about getting the help that we need, specific to your development and abilities.

some families have provided the ability to let my emotions flow. hearing these {mostly} moms talk about their day-to-day lives with their girls sometimes makes me cry. sometimes makes me think. sometimes makes me dream. wonder. wish. laugh. hope. work. the list could go on and on and on. these families have helped me to feel and understand those feelings better than i ever could have on my own.

i hope our friendships and connections continue to grow and develop as quickly and deeply as they already have and that we can continue those relationships when all you sweet little girls are cured. i imagine a day when all of YOU get together and can laugh and chat and cry about your former rett lives - and how you've all become better and stronger individuals for those struggles you overcame.

my life has been blessed and more full because of these families we've been able to meet in the last few months. and, although i really, honestly, truly wish i never HAD to meet them, i will forever be grateful that i did.

i love you little leah. and i love our rett family.


  1. DITTO.
    so looking forward to friday!

  2. I love reading your posts, they almost always make me smile! We have an amazing family :)
    P.S. what is this that Erica speaks of on Friday night, ugh - wish I (or you all) lived closer!!!

  3. Oh man...my THOUGHTS exactly!!! I love you Maren, I thought about you this morning because Brooklyn is wearing her "gp2c" hair clips you made for her - she LOVES them. I think it is because EVERYONE loves them and tells her how adorable she looks when she is wearing them (what girl doesn't love that!?)