Sunday, October 28, 2007

Thoughts on today

I have quite a few things I want to say about the event today.
First and most importantly I met some AMAZING moms (and girls) today. I am still new to our "life with Rett." There were moms there that have been living this life for 23 even 33 years! Today was harder on me than I thought it would be.

{I want to insert quickly that I truly HOPE I do not hurt any one's feelings}

Today was the first time that I was around "older" girls and I can't lie, it was tough. To be honest I find it hard to look past this week into Brooklyn's future; to think about her at 16, 25, 33 is almost too much to comprehend. Again, I am new at all of this so please give me time. I do not think I have fully accepted the whole "Rett thing" entirely. I mean yes, we have the diagnosis and most days I am ok with that.

Today was not one of those days.

I was in a room with 9 fabulous young ladies today that DO NOT deserve the struggles they live with daily because of Rett. I saw a 23 year old gal sit on her father's lap for comfort after she was taken out of her wheelchair to stretch her legs, moms of 20 year olds taking their daughters in to the bathroom to change their diapers, a brother holding up a sandwich so her big sister could eat, a room full of wheelchairs. It was all so overwhelming for me.
On the flip side.....
I was in a room of "experts." Moms that have walked a mile (or thousands) in my shoes. It was a place where EVERY mother in the room could relate to me.......a mom of a rett girl. I was not with a room full of moms talking about their kids growing vocabulary, their dance classes, and sleep-overs. I was with moms talking about gait trainers, seizure meds, wheelchairs, and augmentative communication devices. They were talking MY new language. A language I never planned on learning.
Overall, I am glad I went. Yes, it was hard; but meeting the other moms was wonderful. They are inspiring. They make me feel like I can almost do this "Rett thing."

Other highlights:
*We got to see Taylor (and the entire Raab family) again!
*Charlie told me that while I was gone Brooklyn asked for "mama!"
*AND yesterday Brooklyn was sitting up after her nap, it has been months since she rolled over and sat herself up....yea!


Special Needs Mama said...

Oh hugs, and how brave of you. Never apologize or feel guilty. You are a wonderful mom.

Rebecca said...

I can honestly say I know exactly how you feel! I was talking to a mom on Friday who was telling how greatful she is that her little 2 yr old girl (non-RS but severely disabled) isn't walking, because she has miclonic seizures and she falls..I shared that I am secretly greatful at times that I don't have to deal with my 4 yr old talking back to me...

But still, I know how it feels to be with those "who know." My friends and family with typical children brag about their children and what they do..Don't get me wrong they have every right to...but that doesn't mean it doesn't hurt like crazy!!!

Here's to the tight knit Rett community! (also, I always tell myself when I'm around the families with older girls, that doctors know more now, and our girls may have more that selfish?)

Anonymous said...

You are very brave Kelly, and should never feel guilty about your feelings. What a hard but rewarding day you had today. Just remember every rett girl is different and what you saw may not be Brooklyn at all in the future. I hope she is feeling better, the boys have sure been worried about their little friend since her episode the other night. HAng in there Kel. OUr family [rayes fro yours everyday. Love THe Petersons

Samson James said...

That was so brave of your Mommy!!! I am so proud of her and we miss you all very much!

Grammy said...

Brooklyn, I am so sorry you weren't feeling well enough to go to the Rett family get-together yesterday. It was so nice to meet your friend Taylor and her family. Pappy and I think you look a lot like Taylor! You both have that pretty smile and sparkly eyes.

shannon said...

You are an amazing person (even if you don't feel like it all the time). And an even more amazing mommy. The truth is, most of us non-Rett moms would absolutley not be able to handle everything that you do. You work full-time, you are a mom triple full-time, and you are a wife! That's a lot. The times I've been around you and Brookie, I'm amazed at the attention to EVERY detail you give her. I know you have no choice and for that I am sorry. I wish I could make her all better. BUT I also know that Brookie is beyond blessed to be with parents like you and Charlie (mostly you, though :) I know I can never know what you go through, but you are in my thoughts and prayers DAILY. If I could offer more, I would (probably everyone who reads this blog would say the same). When things just plain suck and you feel overwhelmed, please find some solace in how very much you are loved by so manty people AND know that Brookie will be better some day! God is always faithful.
Love ya

Scott said...

Kelly, first and foremost, don't ever feel guilty about how you feel when you see other parent's with their are an AWESOME MOM, and Charles' not bad can see the love in Brookylns eyes when she is with you two...don't ever doubt yourself as a mom, because there are parents out there with non-rett children who could learn alot from you in the areas of compassion, understanding, humility, and most of all, True guys take care and be on the look out in the mail for something....take care

Anonymous said...

I love how you always find the postive in everything Kel! I love you and I am so proud of both of you. Please let me know if you ever need anything! Amanda