life on the "j" train

Taking a "busy working mom with 2 special needs kids" life one moment at a time

Love No Matter What August 31, 2016

 

When Jay was a baby, we struggled mightily.  There were many sleepless nights and many more tears.  He was uncomfortable and fussy a lot of the time and nothing could soothe him.  Now, when I tell people about Jay being a difficult baby, we laugh about it.  It makes for funny stories.  Back then I was falling apart.

When we got his Autism diagnosis, it was awful.  We didn’t know what that meant or what the next step should be.  I didn’t want it to be real.  I wanted him to out-grow it.  I wanted him cured.  I wanted him to have been mis-diagnosed.  As a part of his evaluation, we took him to a well-respected hospital for a hearing test.  I remember sitting there hoping that my 2 year old had a hearing problem.  Not Autism.  Hearing loss would be easier I thought.  Teach him to sign.  Give him hearing aids.  No problem.  We can deal with that.  Not Autism.  The only things I knew about it were bad and I felt ill-equipped.  And cheated.

 

For a very long time I couldn’t bear to say the word.  It would get stuck in my throat if I even tried.  I didn’t want anyone to know.  I felt like since Jay didn’t have it bad, we could hide it and that would be the best way to go.  I would cry – In my car and in the bathroom at work and while taking a shower.  The shower was my favourite place to cry.  I was embarrassed at myself and my weakness.

 

At the time, I had a coworker who had an Autistic teenager and he talked about it very openly.  I admired him and his wife.  In speaking with that coworker one day, he mentioned that even though it had been a tough road in many ways, if someone was to somehow hand him a magical pill to make his sons Autism go away, he didn’t think he’d give it to him.  As he saw it, the son he had raised and knew and LOVED so very much would then be gone.  Taking away the sons Autism was akin to losing his son altogether and being handed a brand new person.  He didn’t want a brand new person.  He loved the son he had.

That blew my mind.

I thought he and his wife were better parents than me because they were so accepting and at ease.

 

I worried.  I hid.  I bargained with the universe.  I messed up at work and almost got fired.  I barely scraped by.  I smiled and laughed when I was outside.  I was angry.  I was sad.  I told everyone that things were fine.  I felt lost.  I didn’t let anyone in, but I felt abandoned and alone.

I healed.

 

Eventually I got comfortable.  I bonded with my child.  Learned him as best as I could.  Tossed out my own agenda and insecurities and fell head first into what he liked and responded well to.  We put things in place to help him.  We developed good relationships with teachers and started talking honestly with family and friends about what was going on which allowed us to have a support system.  We found our happy.

None of it has been easy.

I wouldn’t change it if I could.  I don’t want a different child.  I love the one I have and I don’t wish for him to be anything other than what and who he is.  I want the same thing for him that I would want for any child I have and what all parents (should) want for their children – For him to be happy and for him to be the best person he can be.  I will do anything I can to help him.  I will guide him.  When it’s appropriate I will take his lead and listen to him.

 

 

When Ace started school we began to see that he was different.  The other kids were able to sit and do their work.  They didn’t talk or move constantly.  They formed and maintained friendships easily.  They weren’t quite so clumsy.  He stood out.  We made all sorts of excuses.  He’s the youngest in the class, boys will be boys, he never went to day-care so he’s not used to this kind of setting.

Then he went to first grade and things were still bad.  He actually stood out more.  We were called in for numerous meetings with his teachers.  We tried all sorts of things.  We tried to explain away his behaviours.  We hoped he’d mature over the summer.  He had another birthday.

Second grade was worse.  He got into a lot of trouble.  He started to feel badly about himself and his lack of ability to function in school.  His teachers got more and more frustrated – but they tried.  His grades started to slip.  Then came another summer where we hoped he’d mature.  Another birthday.  Third grade didn’t bring any relief.  He had his favourite teacher to date.  She was great.  He loved her.  She was trained in special education and had wonderful ideas and strategies about how to get and keep him engaged.  Nothing worked.  Other kids were breezing through.  Of course they were.  It was elementary school after all.  I thought back to my time in first through sixth grade and they were wonderful.  A real cake walk.  I saw and heard my friends brag about their kids academic accomplishments and I smiled politely.  I was resentful of (what I perceived to be) their easy road.  My kid was failing classes.  He was struggling to get through soccer practice and karate class.  We ended up quitting both.  This was not the life I had imagined.  Online I shared funny things he said and cute pictures I’d taken.

 

We had come to the end of our rope and had to make some difficult decisions if we wanted to help him.  Not decisions that any parent wants to make.  He was only 8 years old.  A baby.  MY baby.

It was hard.  I cried.  I messed up at work.  I almost got fired for a second time.  Or maybe it was the fourth time by then.  Work suffered a lot.  That also stressed me out.  I couldn’t afford to lose my job.  I Googled symptoms and treatments and therapies.  I searched online for other parents experiences.  I told everyone things were fine.  We signed him up for social skills/OT groups.  Even there, among other special needs children, he stood out.  I didn’t eat well.  I worried.  It was all I thought about.  It hurt.  I hugged him.  I prayed for him.

I healed.

Fourth grade was his best year yet.  We are relaxed heading into fifth.

The bottom line is that I love my son and I wouldn’t change him.  I don’t want to make him into a different person or wish for another son instead of the one I have.

 

I don’t pray or raise funds for a cure.  I don’t sit around wishing Jay didn’t have autism or Ace didn’t have ADHD.  To me, now, that’s like saying I wish this child I had was not here and I had a different child.  Even on the hard days.  Even when I think back on the hardest of days and nights; I would not wish these particular children away.  I cannot imagine my life without them (exactly them) being a part of it.

 

 

I read excerpts of a book by Sue Klebold and listened to an interview she did.  Her son was one of the Columbine shooters.  I am paraphrasing here but essentially what she said was:

 

For a while after it first happened I used to wish that he had never been born.  I wished that I had never gone to that college and met that man and gotten married and had that child.  If I hadn’t done any of that then this terrible thing would not have happened.  With time I came to realize that I love him no matter what.  I love him so much that I don’t want to imagine living my life without him being a part of it.  So even though the pain that he caused to others cannot be forgiven, the pain he caused me can be forgiven.  And while I recognize that the world would have been better off without him, it would not have been better for me.

 

Even the worst of us are someone’s child.  She talked about receiving threats and about how people treated her as if what her son did was her fault and feeling unwelcome when she went to the memorial site.  She knows that people are hurt; And rightfully so.  But she is hurt too.  Her son died too.  She’s not excusing or justifying what he did.  But she loves him still – No matter what.  I understand that kind of love.

 

I watched a documentary of a family who are raising a transgender child.  The parents share their pain and worry and the internal battles they fought.  They talked about how the relationships with some loved ones changed and how incredibly difficult the whole thing has been on them all, in every way.  This is not a life they would have ever chosen and it certainly is not something that they are pushing onto their child as has been suggested by some people.  They fought against it for years and put him in counseling and tried everything to make their son feel like a boy.  She said she got to the point where she would go to Church and spend the entire time praying for her son to “only be gay”.  That would be easier than him being transgender.  This was her baby.  When the mother, through tears, talked about her then 4 year old son contemplating suicide or saying that he couldn’t wait for his parents to die so he could grow his hair and wear a dress it broke my heart.  She looked at the camera and said “If your child, at the age of 6, talks about mutilating their own body so they can feel right, you get on board with what’s going on.  You stop pushing against them.  And if that’s not your way, then screw you.  My child won’t be one of the 41% of transgender children who attempt suicide.  Not on my watch.”  He is now a she.  (Socially not physically).  And happy.  It’s still hard.  Every time they leave their house, it’s a minefield.  But she loves her child and is there for her every step of the way.  No matter what.  She no longer wishes for her son back.

 

Whether you’re the parent of a girl with Down Syndrome or that of a robber or murderer.  The parent of a gay or transgender child or that of a blind boy.  The parent of a drug user or prostitute or someone autistic.  Parenting is hard and none of us have all the right answers.  We nurture them towards a certain type of life, but ultimtely we don’t get to choose what we end up with.  The bottom line is that it’s not about us or our comfort zones or our dreams.  We either love our children or we don’t.  When they need support, we support them.  If they need help, we help them.  If they need protecting or defending, well, you get it.  There is no gray area.

The love is all-encompassing.  Visceral.  Deep.  Fierce.  Tender.  Abiding.  It can render you completely broken and helpless.  Yet, even in the most broken of broken-ness; you love.  Still.  No matter what.

 

I’m not saying I don’t want life to be easy for my children.  Of course I do.  I don’t want them to suffer or be in pain or have to deal with bullies and prejudice.  I’m not saying they can do no wrong.  I am not and will not always be proud of the choices they make.  What I am saying is that at the end of the day, while I may need to adjust to some things, there really is nothing that my boys could ever do or ever be that would make me love them any less or distance myself from them.  NOTHING.  The love I have for them is automatic.  It’s a done deal.  They don’t need to earn it or maintain it.  It just is.  There is no pain or stress or cost that would make me wish I had never had precisely them.

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6 Responses to “Love No Matter What”

  1. Lisa Says:

    This was masterfully written. I share your sentiments…and can relate, greatly. This life…it’s hard, it’s wonderful, it’s exhausting, it’s uplifting…it’s messy. But I would never change who my boys are. They are, like you say, precisely who the are meant to be…and they are exactly what I need. Love this one, Deenie.

  2. NickyB. Says:

    I can totally relate to what you’ve said. It took yearssssss for me to be at the place that I am right now. I love my son and cannot imagine him being any other way.

  3. So beautifully expressed. All the tears I’ve cried, in my car, in our house when it was just me, and in the shower. All the days I couldn’t wait to be able to finally flop into bed at the end of the day. And my envy of friends who shared things on social media that their kids did or achieved, that my son won’t do: sports, prom, honor roll, theater, or any extracurricular activities. But my son is special and wonderful. Thank you for sharing such heartfelt words.

  4. Celia Says:

    Beautiful Deenie. And powerful. I am always so inspired reading your blog, and so proud of you. Like I’ve said before, what a wonderful mother you are. Those two boys are so blessed to have you. Much love my friend.


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