Tuesday, March 20, 2012

The day the house went quiet

I have to say…this is hard for me to write.  I am the type to focus on the “how to get better” and not on the “how did we get here?”  But it is part of Marley’s story, albeit, the hardest part.  Was it in my imagination?  Was she really the sweet connected baby I remembered her to be?  Did the vaccines take a toll on my baby?  So just today, I finally pulled out the baby videos along side her vaccination schedule and all the doctor’s notes, sat down with a box of tissues and pressed play.  I needed to know.

The beginning was wonderful.  She was so cute and responsive.  She made great eye contact.  By 10 months old, she was starting to use words like bye bye.  Then at 12mos, you can see a bit of a regression after her 12 month chicken pox and polio vaccines.  But she bounced back.  She is still looking at me when I call her.  At 14 months old, I watched her play peek-a-boo with the cat through the window and laugh.  I watched her have a pillow fight with daddy laughing when he called her name.  She was mouthing every toy, but she was still talking.  When she started walking at 16 months old, she was saying mama, dada, papa, bye bye, kitty and a few other words.  She was late to walk because her left side was affected by her brain bleed.  But she did it.  She was determined.  I looked down at the doctor’s notes at age 15 months.  She got a clean bill of health.  She was cognitively behind one month, but was catching up to her adjusted age.  (She was a preemie.)

Then it happened.  At 18 months old, she got an MMR and a DTaP.  That is 3 live viruses and 3 dead ones.  Apparently, her immune system couldn’t take it.  It rocked her world.  The home videos start to turn ugly.  We take her to the beach.  She cannot pull herself out of the water.  We try for about 30 minutes but she just screams and thrashes and heads back to the water.  I keep watching.  It seems the only things that can soothe her are music and Sesame Street on TV.  She dances, but no longer dances FOR me.  She dances because she is rocking to the music.  She no longer looks at me when I call her name.  The tantrums turn scary.  They go on for an hour or longer sometimes.  We even video taped one.  It made me shake all over to hear those screams again. 

Then there is the comment that will stay with me forever.  Marley’s nana told me,  “I used to come and stay at your house and listen to Marley babble in her crib for at least 30 minutes in the morning.  Just playing.  Just using her voice. Then it stopped.  I didn’t hear her anymore”.  That was like a knife to my heart.  The very true realization that there was nothing.  No noise.  Just screams. My baby stopped talking.  She stopped babbling.  She stopped responding to me.  She stopped looking at me.  She was gone.  It was like someone came and took her voice away one night as she slept.  That was the day the house went quiet. 

Our life was pretty ugly for a while.  We endured out-of-body like tantrums.  Earth shattering screams.  Anything and nothing would set her off.  She would hurt herself and others during these episodes.  We took her in for an EEG to check for seizures.  It came back clean but they said that doesn’t mean she is not having them.  It just means they did not catch her in the midst of one.  But the worst is when my rock of a husband finally caved.  He cried.  He NEVER cries.  He was so afraid of Marley hurting herself.  Then is when we started looking for help.  REAL help.  Not medication to drug her up.  (Believe me, we were offered the open-ended Rx of Prozac for my 2 year old.)  No….we needed REAL help.  We needed to heal our baby.  That is when our autism road to recovery began. 

Chris was surfing the web and he turned to me and said, “I think I found something.”  We watched a video of Dr. Bernie Rimland talking.  He is the founder of DAN!  Defeat Autism Now!  It looked interesting and it was our best lead since we walked out the pediatric neurologist’s office just shaking our heads at the doctor’s condescending mannerisms and offering of Prozac to our 2 year old baby girl.  We watched Dr. Rimland some more.  This looked interesting.  He was saying that our kids are SICK.  That there are many approaches like diet and supplements that can help.  Chris said “There is a conference in Boston coming up next month.”  I remember saying “I don’t think we can afford for me to go.”  And then my life partner said to me…”I don’t think we can afford for you NOT to go.”  And boy was he right.  That is why I married this man.  When push comes to shove, he stands up for what is right…no matter the cost.

I did go to that conference in Boston in 2005.  I met other moms with similar stories and learned their successes.  I listened intently to the most cutting edge science coming out of Massachusetts General Hospital in Boston.  And finally, I cried because I didn’t realize that her 10 loose bowel movements a day WAS NOT NORMAL.  I cried because I had just watched my daughter slip away.  And I cried because I was finally getting come answers.  My daughter would start to get better.  I just knew it.  

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