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 
smiles.
"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.

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. 

Sweet Little Angel

There's more

One in a million? Nope. More like one in billions.

So, we reported a month or so ago that we found out that Elinor has a "fairly unique mutation" of the Rett gene.  We had to wait weeks until we could get an appointment with her geneticist to discuss anything further.  This week we finally got to go up to Primary Children's and visit with her doctor.  As it turns out- when Dr. Carey says "rather unique" he isn't kidding around.  Her variant of rett (which occurs in the MECP2 gene) is labeled c.695dupG and apparently there is only one other case in the world.  He found one match in the database at the International Rett Syndrome Foundation, and found this case mentioned in a science article about the spectrum of Rett disorders in New Zealand.  So that is where the other girl resides.  I say girl, because this syndrome affects the x chromosome, so it is almost exclusively a condition for girls, and I say "case" because there is absolutely no info on this person (child?)  The article was written in 2009, so the youngest this person would be is about 5, but they could be like 40 too.  Who knows.  I do know that I am going to try my hardest to find this family, I would love to see how this girl is doing, and how she grows up, and what she can do and everything about her!  Now that I know there is only one case like Elles, I feel a tie to this other girl and would love to be able to contact them.  Dr. Carey is going to write to the author and see what he can find out.  I am going to patrol around the online Rett community and see what I can do.  I imagine they would be curious to know that Elle is out there too.

Anyway- because of the rarity, we can't really say for sure what Elinor's future holds.  On one hand it's nice to have a group of girls that have the same thing that have been studied, so you can project the future a little.  On the other hand- with Elle, the sky is the limit!  She gets to write her own future.  She gets to tell us what she is going to do and how many words she will say and when (not if) she walks.  We are going to write the book on what this unique little rett variant is capable of.  We are excited and hopeful and know this little girl is very special.  It was a lot of trouble for her little egg self to do the stuff it did to turn itself into the cute little one of a kind (almost) baby it did, so I know it was meant to be.  She is the person she needs to be on this earth and we are so loving the crazy little happy thing that she is.  I've been telling people for a long time now that whatever she has, it's a pretty good version of it.  I was right, I also started saying that she has "Elinor Syndrome" and I was kind of right about that too. 

I am also kind of excited about the possibility of maybe having an excuse to travel to New Zealand someday.  Thanks Elle- glad your double isn't in Detroit or something (just kidding- I don't mean to hate on Detroit or anything, I just have always wanted to go to New Zealand- it's always seemed so interesting and exotic.)

Easter Egg Hunt: Elle Style

 






We went to the neighborhood Easter egg hunt yesterday morning.  They had the hunt broken down into age groups, having each different age group on a different neighbor's lawn.  We started at the ages 18 months to 3 yrs lawn and Elle was in her stroller.  When they said go, all the other kids Elle's age started collecting eggs in a little frenzy, and I watched Scout struggle to push Elle's little stroller through the grass and collect eggs for her and put them on her lap so she could participate too.  Scout even made sure Elle got a thing of bubbles cause she loves them so much.   It was a sweet sight watching them, thinking about the years to come and what an awesome sister Scout is going to be and how much Elles needs her.

It's Rett

I got the call from Elle's geneticist yesterday, they finally found something in the latest test.  Our sweet little girl has a "rather unique mutation" of the Rett gene.  So now we know.  The search is over.  Can't say we are surprised, but I am rather shocked at finally having an answer.  We know very little right now, Dr. Carey is arranging a meeting for us with him because he wants to go over these findings in person with us.  We will know more in a couple weeks.  Crazy!

Thanks for all the support and love we have felt from family, friends and strangers.  You all make this journey easier and thank you Elinor, for being the sweetest, brightest little star in our lives.  We couldn't love and adore you more.   We are so grateful for the honor of having you as our daughter, you truly are a special little girl and enrich our lives in ways we never dreamed.

GO!!

Thought an Elinor update was in order- it's been awhile. 

She is actually doing awesome.  We are all very impressed with her this last month.  Here are some things she is doing:

-Sitting up straighter more consistently (her little hunch while sitting on the floor is sometimes gone completely - but sometimes it's as bad as ever). 

-Her left hand is at least participating in feeding time a little more.  It has made the stride of dipping it in food and squeezing it a little.  A year ago, that same hand was outstretched and put toward her back as far from the food as she could get it while she ate.  So this is major progress.  When she dips it in food, I am supposed to bring it to her mouth to eat whatever is there, teaching her eventually how to eat with it by forming that pathway to her brain.

-She is beginning to learn how to drink from a straw.  We have a little bottle straw thing that allows us to squeeze the juice up most of the straw to have it be easy for her and learn better how it works.  This is key, because she is seeming less and less enchanted by bottles these days and we are going to eventually need another way to get liquids in her.

-There is a general feeling that she is more engaged with her surroundings and what is happening in her world.  Toys are way more exciting and this is great news, because before, she barely cared about toys, and getting her to be motivated to play with  a toy goes a long way in helping her with her therapy.

-Her standing is getting really good!  Most of the time that I get her feet around the ground she will put weight on them (as opposed to not very long ago, whenever she would sense the ground near her legs, they would curl towards her body like a dead spider.  The physical therapist is leaning towards getting her some braces to make sure her feet and ankles are straight.  She would only wear them when she is going to be using them to stand, we want to stay away from full time braces, most because it causes laziness in the muscles and we don't want that.  But we do want her to have her feet straight when she stands.

-She started back up with Courage Reins (classes ended early December, so she has had a long break).  The last month of classes, she would start to cry midway through and would cry the rest of the ride.  It seemed to be when she started getting tired.  We have had three classes so far this year and she has loved every minute of her rides this time.  I think it is attributed to her growing trunk strength which is an exciting change to see- affecting many aspects of her development.  She is loving it so much and doing so well, this week they gave her an extra long ride.

- Speaking of Courage Reins, this is the most exciting thing to me- she seems to be signing "go" (or doing an Elinor version of go).  At Courage Reins, they stop the horses a lot and make the kids sign "stop", then they make them sign "go".  The lady in charge has been telling me the last two weeks that Elle is signing go and she would flap her hand imitating what she is doing (they are too far away for me to make this out myself).  I would smile and be a little hopeful, but the sign seems to just be something Elle's would do anytime- I mean Elles flapping her hand......yeah, not a strange sight.  So I was skeptical, but told some of her therapists that they think she is doing it at Courage Reins.  Well yesterday at motor class, one of the teachers was bouncing her on a giant ball to build a little trunk strength and it reminded me of the horse back riding, so I told him about her alleged signing.  He said, well lets try it out and stopped bouncing her.  Then he would say GO and sure enough, those little hands flapped for a second.  Then they would bounce and he would stop and they would do it over.  She did it all four times!  I watched.  The last time, he didn't say go, just stopped and watched her.  She hesitated for a second and then sure enough, one little hand flapped as if to say, "come on!  Do it again!  GO!"  So he did.  It caught the attention of some of the class and we all watched it and everyone was excited and proud of her.  It was a big deal!  My little girl signed, "go"!!  Mom is a believer now and I am so incredibly proud of her.

Go Elles, go!