Emmy in a Storm

A post from Emmy's dad - john

For some time now a drawing has been taped onto our kitchen wall.  Months have passed with only casual glances.  A few days ago, during a difficult "Rett Day", I looked at the image.  Through new eyes it reset my perspective a bit.

The above image was drawn by Ava.  She describes the piece in such beautiful simplicity - "It's Emmy in a Storm".  ...my new eyes became filled with tears... The intensity of the storm, the strength of the umbrella and the pronounced smile on her face....  Her battle with Rett Syndrome is what we make of it.  To her this is life.  I will try as hard as I can to support her umbrella.

This image so nicely applies to most difficulties in life.

Here Comes the Marshmellow

John starts this game with the girls by announcing, "Here comes the marshmellow..." and the giggles begin.  They lay on their backs and the 'marshmellow' begins bouncing off their stomachs.  The kinda of scary part is the end when the marshmellow attacks.  This is Olivia's first time playing and you can tell by the look on her face that she is a little unsure.  She also gets a couple little elbows from Emmy, poor kid.  She takes it like a champ...

Of course there are variations...like 'here comes the leaf'

Reasons no. 102 and 103 why I married this guy.

Maren,  obviously your blanket gets lots of good use around this house...it is the perfect size and so comfy : )  

Wal-Mart Throw Down

I am not a confrontational person.  I really try to avoid confrontation at all cost.  But today at the grocery store, when an older lady decided to offer some free parenting advice during one of Emmy's flailing, biting, head hitting fits I could not simply walk away.  I know she has no idea what it is like living with Rett Syndrome.  It is a unique experience to say the least.  But when she told me I needed to take some parenting classes...well, let's just say that was my tipping point. 

These fits really started during her regression.  She has them at home, she has them at school, she has them at graduation parties (like the one we attended this weekend) and they can come out of no where.  For a while I chalked them up to the fact that she was losing skills and figured they'd get better.  Now I am certain her regression is FINALLY over but the fits continue.  John took her to the Rett Clinic in Minnesota.  They basically told us it was our parenting.  That she should not be on medication.  Now, I didn't take any video of the fits so I guess they really didn't see how severe they were.  And to some degree we were caught up in the emotional aspect of the whole situation and I was really unable to piece apart what was just three year old behavior and what was Rett.  We were concerned that maybe she was in some type of pain so we began treating her for reflux but the fits continued.  We implemented the PODD book so she could communicate better...it's not a perfect system but it's better than only yes/no cards but that hasn't solved the problem either.  We have an appointment with our GI specialist and we asked him to talk to Dr. Motil from the Rett Clinic in Texas.  I am ready to do whatever tests they suggest.  We need to know if she's in pain.  We even purchased a 'Special Tomato' soft floor sitter for her so she can't hurt herself during fits.  This was her birthday present.  Typing that makes me so sad.  A four year old should be getting dollies and playdough not soft chairs so she can't hurt herself.  Anyway, it sits on our family room floor and has been a life saver.  See I can't just set her on the floor and surround her with pillows.  Nope.  She's strong and she can scoot across the floor.  She will scoot over to the wall, TV hutch, pretty much anything hard and whack her head on it as hard as she can, over and over.  So now we're going to see Dr. Heydeman a neurologist out of Rush.  He sees many Rett girls and is willing to prescribe medication if needed.  I couldn't get in until February but after todays episode I called his nurse and begged.  I never thought I would BEG for a doctors appointment but today I did.  The nurse must've felt sorry for me because she worked some magic and got us in this Friday.  Thank goodness! 

So there is the history.  That brings me to today.  The throw down.  I had Emmy and Olivia and decided to go to Wal-Mart to grocery shop because I hate to say it, but they are sooo much cheaper than the alternatives around here.  Emmy LOVES to go grocery shopping.  I usually try and save my shopping for when she's with me.  For some reason it is such a special time for us.  She sits in the cart facing me and we talk.  She helps me make choices and I smoother her with kisses.  I tell her what a sweet, beautiful, smart, brave girl she is and how lucky I am to have a helper on my shopping trips.  She beams.  And I know that one day she will be too big to sit in that cart and face me.  I want to hold on to this time with her.  And Olivia kind of likes sitting in the big part of the cart and looking around but that doesn't leave much room for groceries.  So, I just stuff the food around the edges or underneat the cart.  Well today I ended up with much more than I thought and after I loaded it on the belt for check out I realized I would need another cart to get all the bagged food and the girls out to the car.  I told the check out lady I'd be right back, that I was going to grab another cart so I could fit it all in.  I went and got one of those ridiculously huge carts with two plastic seats for older kids.  I put Em in the big plastic seat.  Now unfortunatly this seat has a back and Emmy is able to hit her head on it.  I should've put her back in the cart seat but I guess hindsight is 20/20.  I rushed back in, hoping the fit wouldn't escalate.  There were now people in line waiting for me.  I tried to quickly  load the groceries and pay.  I knew people were staring but hey, I've developed a pretty thick skin.  I guess I could've just walked away and taken her straight to the car.  Anyway, I was then focused on paying and getting the hell out of there. 

And that's when this older lady approached our cart.  I'm not sure how she started since I couldn't really hear over the yelling (Emmy's that is) but all sorts of horrible things began spewing from her mouth.  She told me I shouldn't have kids, that I need to take parenting classes, that I was basically a horrible mother.  Well I unleashed on her.  To be honest I'm not sure what I said.  It was pure blind rage.  I think it was a combination of sleep deprivation, cold medicine haze and anger all mixed together.  I know I told her my daughter has a disability but it was obvious she wasn't listening.  Now, I have to say I know it is hard for people to watch somebody hurt themselves.  And I hate seeing it too but it is a part of  my EVERYDAY life.  Happy or sad, Emmy walks up to hard surfaces and hits her head...hard.  I have two choices.  Put a helmet on her (and I'm not sure that would really protect her plus I'm sure she'd hate that) or follow her every second of the day.  So I'm calloused.  I'm hardened.  I tell her that hurts, I ask her to stop, I distract her, I put her in a different location, I sit her in her chair and play  her favorite music, I sing silly songs or read books.  But at the grocery store today I think I tuned her out blinded by the sole mission of getting her to the car where I knew she'd calm down in her car seat.  So it was a pretty heated exchange.  Lots of yelling by both parties and the throw down ended by me almost taking her out with my big ol cart while trying to make my way to the exit.  I was shaking mad.

After writing this down though I am grateful, in a very weird, round about way that this occurred.  It drove me to BEG for an appointment with the new neuro.  I don't know if I would've called to do that otherwise.  And I know having these challenges in my life that I will NEVER give unsolicited advice to some poor mother at the grocery store or anywhere else for that matter.  I will not judge or condescend...even if I'm a sour old lady.  Because I know what it's like to live in a world where your heart breaks day in and day out while you watch your child act out of such anxiety and frustration.  So thank you, you cranky old witch from Wal-Mart.  Out of all your horriblness came some good.               

Loss

I had kind of tricked myself into thinking everything was ok.  That even though Rett Syndrome is difficult so many families make it work...and that we'd all be ok.  But just in the past couple of weeks Rett Syndrome has taken two more lives and it has shaken me to the core.  The night before Emmy's birthday I broke a rule.  A great rule that my friend Colleen had told me about when I met her at the IRSF conference in New Orleans...no Facebook after 8 o'clock.  When I logged on, the first post that popped up was about an amazing woman, Karly, who had lost her battle with Rett Syndrome at the age of 27.  Karly had learned how to use a keyboard to type and had started a blog to share her insights.  Reading her blog was like a little window into Emmy's world and it gave me such hope.  If Karly could learn how to read and communicate...so would Emmy.

And then yesterday, first thing in the morning, I learned that a sweet four year old, Anna, had passed away.  After we were diagnosed I watched a video of Anna and her parents on The View.   I didn't think that these deaths would affect me in the way that they have.  I thought I had kind of dealt with the whole 'early death' thing and had made peace.  But I am realizing that loss is something we will feel over and over again.  When we were first diagnosed I felt like I had lost Emmy.  I really had to grieve which was strange because she was still here, looking up at me and smiling.  And everytime I see Rett Syndrome taking over her body in a new or different way, I grieve a little more.  Hearing about these deaths was just a slap in the face, a reminder that one day I will need to prepare to lose her again.  I guess that is just the nature of the beast but man is it hard to swallow.

None of our Rett families knows what the future will bring but for the most part I feel like we are a pretty resilient bunch.  But not yesterday.  Yesterday seemed to knock us all down a notch.  I'm hoping that my fight returns today.  That the uneasy feeling in my stomach subsides.  After all, Emmy was happy this morning.  Her breakfast kept rolling out of her mouth but we moved past that.  She went on the potty, laughed at her sister in her jumpy thing and lifted her legs nice and high to climb the HUGE stairs on the bus.  I'm praying for no meltdowns at school and a good therapy session this afternoon.  I guess we just take it day by day, celebrate all the goodness and give the finger to the bad stuff.  She is here now and for that I am so very grateful. 

My heart aches for these parents who have lost their children and I hope they are feeling the love, prayers and support that is being sent by our family and I know many other Rett families.