The road less traveled

4 Dec

I know everyone loves to talk about how the road less traveled is full of new sights and turns, and makes one better for choosing it.

But in life, we don’t always get to choose that less-travelled road.  Sometimes, we’re forced off the beaten path.

When Maura was born, she was deemed a healthy baby.  Her Apgar’s were 9 and 9.  She nursed instantly, she was wide-eyed and interested and could even hold her head up at one day old.  She would scoot herself into the corner of the bassinet b/c she liked to be against something.  She kept growing and eating and being happy.  We were on the path of normal childhood.

Maura, one day old.

Maura, one day old.

And then we weren’t.

We were forced off that path when she was fifteen months old.  But we had no proof to show others that indeed, we were on a new path.  Now, anyone who meets her and tries to interact with her realizes that she has special needs, that she is disabled.  But at fifteen months old, she was happy and healthy and moving, and just “behind”.  Despite it being a scary time for us, our feelings were deemed “over the top” by many.  When I confessed finally that we had run a test to make sure Maura didn’t have Down Syndrome, because she did have some key features for it and delays, enough to make the doctor want to make sure it was ruled out completely – the one response I remember well was “Well I could have told you that did she didn’t have that!”

And I was made to feel all my fears were silly.

As the slew of evaluations started, my worry grew.  We went to doctors only to leave with no answers.  Maura continued to be happy and healthy and a little behind, but obviously not special needs by any outsider’s standards.  “You really shouldn’t complain so much, other moms have it worse than you.”

Yes, I was told that.  I wasn’t allowed by many to think that maybe – just maybe – my daughter wasn’t just a little behind, but that she truly had more going on than anyone could imagine.

In so many ways, we were on our own.

Maura, age 2 1/2

Maura, age 2 1/2

It seems that there is a normal route to having a child with special needs.  Either something big happens at birth, or there’s that big crisis and/or diagnosis.  Then instantly, people rally around you, offering love, meals, guidance.  You get your badge and find others with the same badge, and find support through them.  You’re embraced as a mother going through a crisis.  You’re treated gently.  You are not doubted. That is the road more travelled.

Our journey has been the road less traveled.  Even though our journey started on the day Maura was born.  Even though we had that moment of crisis, when we realized our path had changed.  Even as people tried to convince us that our path was the normal one, that we hadn’t gone down a different path, even though we could see the path had changed. It wasn’t until she was three years old that even we started saying “Yes, she is a child with special needs.”  It still took some time for others to catch up.

As Maura has gotten older, all the doubts have disappeared.  She’s still healthy and happy. But she is disabled.  She has cognitive disabilities.  She is a person with special needs.  Even though we still don’t know why, there is no one denying the fact of it now.

Now, the roles are reversed.  I have people say to me “What I’m going through isn’t as big a deal as what you’re going through with Maura.”  And to them I say “It’s ALL a big deal.  If something is happening to your child, it’s the biggest deal in your world.”

Because when the biggest deal in the world happened to me, I was told that it wasn’t one.  And no one should have to feel that way.

I took the one less traveled by,   And that has made all the difference.

I took the one less traveled by,
And that has made all the difference. – Robert Frost




3 Responses to “The road less traveled”

  1. lifeofawillow December 4, 2014 at 12:53 pm #

    shes lovely and what a wonderful mother you are.

  2. Darcy Pennington Arnold December 4, 2014 at 4:41 pm #

    Oh, Phoebe; I am so sorry no one was there for you. I know that your post was not to gain empathy or sympathy. But, as the grandmother of a nine year old granddaughter with Down Syndrome, I realize how alone you must have felt. I know the courage and understanding we had and continue to have, through the DS community. I know the strength we have gained from their support and I am so sorry you did not have that.

    For what it’s worth, when I read your posts, I marvel at your strength. And I wish I knew you personally:). Thank you for sharing.

  3. Cyndi December 8, 2014 at 1:44 pm #

    I relate to this because what we deal with in our son is diagnosed but rare and the specislists don’t have very many answers. If he had been born 4 years before he was, when there was no testing, he wouldn’t have been diagnosed and people would think I was crazy. He has low muscle tone, and developmental delays because of his disorder but the doctor’s can’t give us much hope he will catch up. My parents and close friends thought I was over analyzing everything when I insisted he was not developing normally, and no one knew what to say.
    I know about the road less traveled and it’s lonely. I’m just thankful every day for his smiles and quirky personality and my husband who holds my hand through the really hard unknown stuff.
    You have what seems to be a great outlook on life and a healthy dose of humor. Your posts often make me smile. Keep on keepin on momma. You’re doing a great job and you were meant to be this special child’s mom. You are who she needed to get through life.

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