Falling

A difficult night was followed by a busy morning.  We ate, were dressed with hair done and ready to leave for my 38wk OB appointment before 9am this morning.  Eva rocked at breakfast but I was determined to not allow it to bother me.  The 45 minute ride to the doctor was uneventful and peaceful.  We were one of two cars in the parking lot... this should be quick and easy!  It was.  Except that everyday activities with Eva are not always the same as with other children.  Eva immediately climbed onto a stool in the exam room.  She sat behind the head of the examination bed that I sat on, waiting to get my blood pressure checked.  Then there was a thud and an intense cry.  I jumped up knowing... knowing Eva had fallen... rocked herself off the side of the stool and fell on the hard, cold floor.  The nurse was kind and I completely ignored what she had been trying to do to me (BP check) and held Eva.  Though she could have been cruel or impatient, the nurse spoke kind, soft words and handed Eva tissues.  It took Eva a few minutes to calm down, but it was I who was nearly in tears myself.  This SHOULDN'T happen.  She should be able to sit on a stool without rocking off!

Every time she rocks, it feels like she leaves me

Eva's rocking has dramatically increased the last two weeks.  I have  found no cause for this.  I beg her to stop.  Then I demand her to stop... without success.

Last night I woke up in the middle of the night unable to sleep.  Tired but calm I laid, willing myself to restful dreams.  Without warning, I was overcome with an image of Eva rocking.  The distant look she often has was in her eyes.  Her one leg was pointed out awkwardly as usual when she rocks, and her hands were across her chest.  I couldn't get her to stop and I couldn't get the picture to go away.  I kept seeing her but couldn't get her to relax.  I felt that she was stuck at a distance.

The rocking does that:  It reminds me of the distance that has been between us before when she wouldn't allow me to hold her.  It reminds me of the distance she has overcome in terms of therapy.  It reminds me that I am still not in control and she can leave me at that distance at any moment, and no matter how much I beg, I can't make her come to me.

I cried.  It was 4am.  I cried for a long time finally falling asleep in tears.  I woke up and the tears still come.

'Disability'

I'm struggling with labels.


I've been fighting for support for Eva.  Part of that fight tends to include getting and eliminating labels.  First it was autism.  That was eliminated.  I was told that her symptoms were the 'opposite of autism' in many ways.  As if autism isn't confusing, what is the opposite of it?!  Most recently, the label of 'sensory processing disorder' has been briefly mentioned.  I've been okay with it.  Labels can be devastating for many children but at this point, I haven't felt that Eva has understand the negative of labels and has only benefited from their good.... she has received ongoing PT and OT therapy because of the evaluation scores that bring the conclusion that these labels fit.


But yesterday, Rene said 'disability'.  I felt like the air was knocked out of me.  'We don't know what kind of DISABILITY she (Eva) may have,' was what he was saying.  As he spoke of supporting families with children with disabilities in our church, that word rang through my head.  DIS-ABILITY.  It tasted ugly as I repeated it. 

Easy or difficult child?

I'm a big believer in early potty training.  At age 1 I get the little potty out and let my kids start playing on and around it.  Soon I begin sitting them on it every time I change their diaper.  It takes a long time to see results but at Mia's 2nd birthday party, she was completely potty trained.

Eva never liked the potty.  She hated it.  She hated diaper changes anyway so adding the dimension of sitting on a toilet which, with her rocking, made her feel like she was sitting on the side of the cliff... this was a battle.  At 2 years of age, she would sit willingly (most of the time) but showed zero success.  Now, if you sit a kid on the toilet enough, they accidentally 'go' once in a while which leads to celebrations and more success.  Not Eva.  I'm not sure if she was that good at holding it or what but she didn't have any 'accidents' in the toilet ever.  So I continued sitting her and letting her run around in underwear with no diaper, cleaning up lots of wet spots on the floor.  Then one day she 'went' 3 times!  The next day was 4.  She has very few accidents, doesn't wear diapers ever... even to bed!  She hasn't had a bedtime accident since I took the diapers off! 

I mentioned the other day... Eva is the most difficult EASY potty trained child out there!  One solid year with zero success and then potty trained in about two days!

Waiting for answers...

...or at least some insight.

Eva was examined by an occupational therapist last week.  She performed well.  That's good right?  I describe it like this:  Eva is an over-comer.... She figures out how to perform a task even if it isn't comfortable.  She performs well.  The point of therapy is to build skills she doesn't have.  While she continues to benefit from adjusting some of the skills she has acquired, she isn't actually lacking.  She looks good on paper. 


Now come and spend a day with her and watch her.  She will surprise you with her vocabulary, color recognition, and ability to keep right alongside her older sister.  You will also be surprised to see her zone out and rock... for extended periods.  You will be surprised to see her fall right off a little tikes chair, come to me crying and then refuse to let me care for her.  How do you fix that? 


We're still waiting on some answers.

Being led... is a struggle

It's  been over a month since I've last posted.  There was little need to update.  All progress was positive and continuous.  


Then two weeks ago, Eva got slightly sick.  Not the flu.  2-3 days of controlled fever and a lingering cough and congestion.  Doctor even said there was nothing to fix.  This was a minor children's cold.  But for Eva, it changed things.


Over the last month, she has rocked much less.  Her vocabulary and communication has exploded!  Almost daily I have someone mention how clearly and how much she talks.  (I know.... I now have two talkers that compete for attention!)  :)  She improved her ability to color holding a crayon with control.  Started labeling colors.  Counts past 10.  Jumps like a champion kangaroo!  On and on.  


Two weeks ago, progress slowed and was replaced by intensified rocking and a new gesture: arms crossed in front of her chest and then brought up against her chest with hands open toward her neck.  She rocks and rocks.  Rocks when it is just her and her sister playing in the toy room.  Rocked when we were at ChuckECheese.  Rocks when we do school.  Rocks when watching tv.  Always rocks when I comb her hair, dress her, wipe her face.  Rocking.  Stiff.  Distant.


I cried to Rene.  'What if this doesn't end?  I love her but will others?  Will they ever see her beauty?  Her personality?  Her spunk?'


I was able to contact our Help Me Grow resource who immediately noticed Eva's new behaviors and agreed to arrange a meeting with PT/OT 'sooner rather than later'.  


I am trusting.... I really am!  I trust the Lord that this trial is for a short time.  That even should it never change, that it will bring Him glory.  Let me be clear, I LOVE MY DAUGHTER.  It is the judgment from others that is difficult.  The possible letting go of expectations, hopes, aspirations that cuts to what is most important in life.  This is where I often have to let go and press on believing God is good.

babies and sickness

I've never gotten sick much.  Just the normal once-every-few-years flu.  

After Mia was born, she got very sick.  She recovered and then we all got sick again That was in December of 2008.  

The next year, December of 2009, I was 6 months pregnant with Eva.  I felt fine all day and went to bed with zero symptoms.  I woke up very ill.  After an exhausting night, I was completely dehydrated.  My OB sent me to the emergency room where they gave me 3 bags of fluids.  The nurses read me the riot act for not getting the H1N1 shot.

December 2010 we had a respite.  None of the Amadors suffered from the flu.  Praise the Lord! 

It is now December 2011 and I spent this week so sick.  Just me.  Oh, and we were excited to find out only a week ago that we are indeed expecting again!  

Now what?  I was so sick with the flu when I was pregnant with Eva.  What if that made things harder on Eva?  The dehydration could not have been a good thing!  This baby is so tiny.... where is the Lord leading us on this journey?

If I could just hold her forever

I wish I had a day by day video of the changes in Eva.


She continues to work hard to overcome the tendencies that slow her down.  She is the most gracious-stubborn child you may meet.  


I joke that if I ask my oldest to snuggle, she is in my lap before I finish my sentence.  She never turns me down.  But with Eva, I can not BEG her to sit with me.  It has to be her choice.  And guess what, she is choosing to be held much more often.  And the last two days, she has crawled on the couch and laid down beside me!  This is momentous!  She has never ever considered sitting beside me when I lay on the couch!  She also has this thing about being covered.  She will only allow you to cover her with her special blanket that she always carries around.  However, today while snuggling close on the couch, I pulled the blanket that I had on me to also cover her.  She didn't move... other than to squeeze in close to me.  If only she would stay little so I can make up for all the times she wouldn't let me close.  


Believe me, I take advantage of every moment now.