The Ties That Bind

Derek's 1st Christmas

When Tyler was about two years old, I put him down for a nap and left the room.  About 10 minutes later, I heard a strange scraping noise.  I stuck my head into his room and found my sweet little boy using the end of a cheap watercolor paintbrush to scrape lines into the walls.  I was sooooooo mad.

Today, I started painting Tyler's room a dark red color.  While I was painting, I came across the scrapes on the wall.  Somehow or other, that toddler is now a 7 1/2 year old man-child.  In the blink of an eye, my baby grew up.

I swallowed the lump in my throat and painted over the marks.

I remember so little of Tyler's toddler years. I feel terrible about that.  Derek was born when Tyler was still in diapers, so all of my memories are foggy from sleep-deprivation.  Then when Derek was diagnosed with autism, Tyler changed--overnight it seemed.  He became a serious, sensitive child.

Or maybe it was me that changed.  I'm not sure.

Time is an interesting thing.

In the past few years, a lot has happened.  People have graduated from high school and college.  Family members and friends have gotten married.  Lots of people had babies.  (My brother had twins.  My sister had two little boys.)

Yet, even though my mind registers that all of these things are happening, time seems to have stopped for me.  Oh, I know that sounds ridiculous.  I mean, I can look at pictures and see my children growing up right before my eyes.  Yet somehow, I'm stuck.  It's like there is an invisible rope tethering me to 2009--the year Derek was diagnosed with autism.

(Did you ever play tether ball at school?  When I was in elementary school, there was one on the playground.   A ball was attached to a rope and the rope hooked to a pole in the ground.  The goal was to hit the ball hard enough with your hand that the rope would wind all the way around the pole with one hit.  I was never very good at tether ball.  Sometimes I hit the ball and it would swing around the pole and hit me in the head.  I should have learned something from that...)

Last Friday was the last day for one of Derek's therapists.  He's had a lot of therapists come and go.  So it shouldn't be a big deal to say goodbye to one of them, right?  Wrong.  The women that have worked with him became like family members to me.  And the one that left Friday?  She was the last of the original four I hired.  The original four were with me during the hardest years, when Derek didn't understand language.  I don't know if they realized it, but they knew me during the most formative years of my life.  They have seen me crumble and fall apart.  They have seen me cry.  But best of all?  They saw me rebuild myself--stronger than I ever believed possible.  When I say goodbye, I am letting go, once and for all, to the person I used to be.

It's time.  The rope is unraveling, whether I want it to or not.  Derek is no longer 2.  Both of my boys are doing amazing things and it's time to focus on that.  I don't want to be tethered to the past.  It is full of pain and uncertainty.  When I think of the future, all I feel is hope.  I owe a good chunk of that feeling to his therapists.  They will forever be Family.

I wonder if the new people I hire will realize how awesome my son is.  I wonder if they will understand why I sob like a baby on his first day of kindergarten, or on a day when he accomplishes something huge.  I wonder a lot these days.

Snippets From My Mother; My Inspiration

Me at 3 months old

May 27th,1978
Beth stopped eating at 5:30 a.m. and by 1:30 p.m. I was calling doctors.  Talked with Dr. S* and he said she probably had indigestion.  For some reason, perhaps because I feared an ear infection or because Beth had even stopped sucking, I called the Hanscom Clinic and they said bring her in.

People tell me that I'm a good mother.  When they do, I smile and nod and say thanks, but I don't really believe them.  Why?  Because I had a great mother.  I compare myself to her.  She was a military wife.  (Military wives are tough cookies.  They are alone a lot.  And they live in fear that their husbands will never come home.)  She took care of me, my sister, and my brother.  She read to us and played with us.  The house was always clean.  We had home-cooked meals and snacks (I didn't know what a Twinkie was until high school).  She drove us to music lessons and swim practices and doctors appointments...

After checking her out, Dr. H called the pediatrician to come in.  After he checked her out they took an X-ray and thought something was the matter with her intestines so they sent us to Emerson Hospital.  There, after a Barium X-ray, they discovered a tumor and we were sent to Mass. General.  

I never really noticed what my mother did...until I became a mother myself.  She made motherhood look easy.  Every single time I have taken either of my children to a doctor's appointment--whether it was just for a routine check-up, for an MRI, for an EEG, or for surgery--I think of my mother.  I think, "If she did this, with a potentially dying baby, I can too.  My child is not dying.  He does not have cancer."  

We were admitted Sunday at Mass. General and Monday and Tuesday Beth had an Ultrasound IVP (Intravenous Pyelogram) X-ray.  (It checks kidney function.) She was scheduled for surgery Wednesday at 2 p.m. and after starving her from 5 a.m. they cancelled surgery at 2:30 p.m. and we got to do it all over again on Thursday.  I thought I would keel over.  She was finally operated on from 4-6 p.m. and they found a neuroblastoma (cancer) in the retrorectal area.  It had pushed aside her rectum (inability to have normal bowels) and in a few more days she wouldn't have been able to urinate.  

She must have been tired.  I'm sure she was lonely a lot.  We moved every 2-3 years, so it must have been hard for her to make friends.  Yet, I don't remember hearing her complain.  Maybe she complained to others--but she didn't take it out on her kids.  We were her priority.  She taught us that possessions and material things were not important.  A house is just a house.   As long as you have your family with you, you can live anywhere.  And we did.  We once lived in an Air Force Base hotel in Massachusetts for over a month.

June 25th, 1978
We can't get over the change in Beth since the operation.  Of course, she is a month older, so that contributes to her abilities to smile a whole lot, to learn to laugh, to kicking her feet, and generally being happier.  She is "talking" a lot, too.  

She had her check-up June 20th with both doctors and everything appears normal.  She has only gained 6 ounces since May 16th, but she grew almost 2 inches.  The doctor said she was constipated for about a month...so she had lots of discomfort, gas, cramps, etc. and that contributed to her being so fussy.  I wish we could have discovered her problem sooner.  The poor kid has been through a lot.  

This whole thing makes one realize the fragility of life.  

My life has turned out to be much different than my mother's.  
I'm not a military wife.  My family has lived in the same house for almost 8 years.  
We live in a small town where everybody knows each other.
Instead of music lessons and swim practices, my days revolve around therapy schedules, IEP meetings, and trying to get my child to eat.  
My house is never clean. 
And frozen pizza and chicken nuggets are a staple in my house.  Home-cooked meals are rare.

The only traces of what she has been through is the bald hair around her head from being tied down for 5 days in the hospital and her scar.  She is also small (4 1/2 months old and weighs 12 lbs).  

Her brother is scared of being left now and afraid of having a tumor or Beth getting another one.  Poor kid--he understands but not enough to forget about his fears.  

After my cancer scare, I was a relatively healthy kid.  But does one ever really recover from a scare like that?  I doubt it.  Cancer is Cancer.  When your child has a brush with death, or health problems of any kind, it changes things.  It changes you.  Nothing is ever taken for granted again.  I never thought I'd be able to say that autism and cancer have any similarities.  But they do.  They make you cherish the little things in life.  

Mom, this post is for you.  I'm sorry if I took you for granted as a kid.  I never realized how much you did--how much you continue to do for everyone you love.  Happy Mother's Day.  


*Names have been changed to protect the privacy of doctors.