Wednesday, September 25, 2013

Elinor's Ad

Elinor is featured in an ad on  We are so excited that Elle has the chance to raise awareness around facebook and beyond.  She has been shared over 160 times and seen by thousands of people!  Go Elles Go!

Wednesday, September 5, 2012

Special Moms

I am dedicating this poem to some of the wonderful moms I've met while attending classes and groups at Kids on the Move.  I have met some women that have blown me away with their attitudes in the face of what they have endured.  I was at Courage Reins some months back and was telling Rob how much I like the moms there and he said that he wasn't surprised since it's a group of women that have all been specially chosen to raise kids with special needs.  He's right!
It takes a certain amount of character and strength to do this.  Our kids don't measure up on the playground and when we go to regular play dates.   We can't sit there and brag about how ahead they are of the other kids their age, or that they are in line to attend the most prestigious schools.  
When I talk to other moms with "regular kids", I can't participate in much of that kind of talk.  I still enjoy talking to all moms, but it definitely takes a certain amount of character to survive it intact and not feeling bad or left out.  I am grateful for the trials and troubles I went through before Elle was even born that refined me into a person who has made this aspect of my life easy.  I'm also grateful for the other special needs kid's moms for showing me how it's done.

Oh, and Erma Bombeck was The Queen.  She always makes me laugh and can make me cry through that laughter (see below)  -I don't care if that makes me seem like a 50 year old woman.

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally he passes a name to an angel and smiles. "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who knows no
laughter?  That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it."
"I watched her today.  She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of it's own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God 
"A mirror will suffice."

I have to take issue with the end though.  That's a bunch of crap.  I am no saint, and I am pretty sure I was sent about 10 saints or angels to help me with this.  Elle needed and needs all the help she can get

But I have to say- if I hadn't believed in God before, Elinor would have been all I needed to prove He exists.

Monday, September 3, 2012

Catching you up

While I have been updating this blog from time to time, I noticed that I have neglected a couple things in Elle's life.  The first thing is that Elle was approved by insurance to get her very own Kidwalk! 

We got to chose the features and the color we wanted.  We picked "raspberry" and it turned out so cute.   She still will only operate it by pushing it back, but it is good for her to be upright and practice.  She'll get it someday and in the meantime, it's good for her to know that she can get around with her legs, even if it is backwards (cause and effect). 
The other thing she has gotten for helping her walk are some braces.  The PT was really, really hesitant to prescribe them for her, but we decided to in the end since she curls her feet so much while standing.  They really just keep her feet straight and help support her ankles.  She only wears them when we practice standing and then I take them right off.  It turns out that they are a big help!  She seems to really like the extra support and is much more willing to stand for longer periods of time and she just seems to have more confidence.
 It was a beast finding shoes wide enough and still in a size small enough not to be an issue.  I went to some fancy stores and ended up finding the Converse at Target fit the bill nicely. 
Oh, and Scout was with us when we got to pick out the braces.  She insisted on pink-which was fine, then she absolutely insisted Elle get the horses for her strap decoration.  I resisted for a while, and was going to go with these pastel colored hearts, but after thinking about it for a bit, went with Scout's recommendation.  I figured that having Scout help pick them out was important.  Having her love and have a bit of pride in her sister's braces couldn't hurt, and Elle is becoming quite the horseback rider anyway.  Scout ended up being right- we love them.

Rob is into fly fishing as you may or may not know.  Online, in a round about way, he happened to stumble on knowledge of a Rett Syndrome fly fishing benefit happening in Idaho and contacted the guy in charge to see if there was anything he could do.  To make a long story short, Rob ended up going, he was one of three Rett dad's there, and Elle was featured in a poster made for the benefit dinner (as were the little girls of the other two dads there) and she was also made up into a card given to all the benefactors along with 20 or so other little girls.
 It was such a fortuitous thing he happened upon it, and he was able to make a lot of contacts and talk to some "higher ups" in the Rett Syndrome Foundation, and learn about an opportunity to get Elles into a study in Oakland among other things.  The consequences of this one little thing could turn out to be very far reaching and it is good for us to get involved in the Rett community- they have proven to be amazing people so far, very welcoming and hard workers about getting things done.   It's great to get some doors opened.  It's one of the greatest benefits of getting a diagnosis- we love that we have a community to belong to and  fall back on and ask questions to.  Even though Rett is a fairly devastating diagnosis, it's so nice to have a name to it, as opposed to just saying that she has some sort of genetic disorder.

I also just wanted to mention that she starts school in a few weeks!  YIKES.  We finished testing at Alpine School District last week and she fell in a grey category where we could actually choose to have her (just for education purposes) defined as either autistic or generally disabled.  I choose autistic, since the school we have her on the waiting list for (and really want) is an autistic preschool.  I figured that would only help our chances of getting in.  She was recommended for full time autistic preschool which means after she turns 3 (in about 3 weeks) she will be GOING TO FULL TIME SCHOOL!!  Mom is trying not to freak out about her baby being gone all day.  I don't just mean my youngest-- she is in so many ways still a little baby and it is really weird to think of having her be in school all day.  I know it is going to be so good for her and when she turns three, she ages out of Kids on the Move, so we won't have that anymore.  It's just hard for me to grasp and think about too hard.  I'll make it though-  I can do this.

Interestingly-- at her tests I found something out.  She was picking pictures out on a poster in front of her as the lady said them.  Stuff she knew anyway (and usually just with her eyes).  She gazed at shoes, an apple, and a cat when asked where they were.  Then the lady showed another page of pictures and kept naming stuff that just simply isn't in her life much, like a glass of milk and Elle ignored her.  At the end, I told her to try the horse, and she did and Elle reached up and swiped the horse!  She has been doing little things like that more and more the last few weeks and Rob and I are very excited.  I think she must be getting her little mind ready for school.  It's pretty exciting seeing the future of communicating with her and that she is starting to be ready to do it.

She is so sweet and content, so it honestly hasn't been much of an issue.  I am pretty good at just knowing what she needs when she seems to need something, but a higher form of communication fills me with great excitement!  It's going to be great.