"taleS froM the trencheS

National Guard wife blogging about her adventures with three sons and the unexpected joys of Smith-Magenis Syndrome (SMS)
....um, yes. They are tears of joy. Really.

Our Squad

Our Squad

Wednesday, March 28, 2012

Perpetual Parenting: Raising a child with Special Needs

Coming to terms with the diagnosis:

In the early days following our son’s diagnosis of  Smith-Magenis Syndrome (SMS) my husband, Charlie, found an internet support group on Yahoo.  He begin e-mailing other parents who also had children born with SMS.  

Within the first couple of days, a father of a teenager informed us that our pain would reappear every time our son missed a milestone; like driving a car or getting married. He ended this motivational speech with the comment that we should "prepare ourselves for a life of perpetual sorrow.”

Perpetual Sorrow!   Who would say that??

We stared at the computer screen.

“Bummer,” Charlie whispered. 

I swallowed the lump in my throat.

“Perpetual sorrow sounds like one of those shrines you see on the evening news with cars lined around the block,” he said.

I had visions of ketchup tears streaming from our wedding portrait.

“I don’t think that we want to live in perpetual sorrow,” he said. 

I nodded in agreement.  That wedding picture was the last time my hair and makeup were done, on the same day.

“Then we won’t,” Charlie declared and he turned the computer off.

It was a long time before we reached out to SMS families again.  

Moving on

Almost eleven years have passed since the diagnosis and two more boys were born.  I think it is safe to say we do not live a “life of perpetual sorrow.”  And that engaging personality? It’s true.  Garrett keeps us laughing despite his challenges.    

Although “perpetual sorrow” is amusing to us now, this certainly is not the life Charlie and I had planned. 

We already know we will be caring for our son beyond his childhood and into our retirement years. However, we prefer to call our unique situation “perpetual parenthood.” 

No, not the kind of everlasting offspring that lies on our couch and plays video games all day.  It’s the kind of parenting that requires constant supervision and involves some worrisome health issues. 

And perpetual parenthood will include Sunday dinners at the kitchen table.  My son will always be excited to see me walk through the front door.  And on every errand, he will manage to con Dad for a chocolate shake at McDonald’s drive thru.  We will have lifetime visits from Santa and party hats at every birthday.

What can be sorrowful about that?

Do you remember your first contact with another parent?  Was it a positive one?


  1. first of all yay yay ya a new post...your back...now stay will you i miss yoiu and your beautiful writing!

    secondly ...fabulous post... i love it!

    and the first time i contacted another persont i was so in bits i think i just stared blankly at words!!!

    i do remember the horror of finding out about the behaviours to stay and asked about adaptions to bedroom (we were already struggling pre-diagnosis) but the response i was not prepared for. i was thinking 'perhaps i should paint her room white and calming and instead i got a response about padding....locked padded toy boxes, raised electrics and padded floors!!!

    i had the stare at the computer and think **** moment then for sure!

    i remember phoning my sister in tears saying, 'i only wanted to know what colour to paint the damn walls!'

    xxxxxxxxxxxxxxxxxxxxxx love you, great to see you back xxxxx

  2. Thanks for the encouragement, Jane! I really, really plan to stick with it this time :)

    Funny about the paint...for some reason I had it in my head Garrett would never be able to tie his own shoes. I remember worrying who was going to tie his shoes when I'm gone...like a grown man with untied shoes was the saddest thing ever. Jeez, buy some slip-ons :)

    But, he can tie shoes...and he will tie your shoes if you leave them out! Over and over so that there are 14 knots in them :)


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