She Rocks!

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Madeline – Rockin that Extra Chromosome!

(It is October, Down Syndrome Awareness month. In case you are wondering, blue and gold is the color of the ribbon to be aware. I don’t need a ribbon to be aware. The heaviness in my heart and footsteps is a constant reminder. A reminder that even after almost three years, Madeline’s presence continues to leave a void in my life, and the life of my family. I started a new full-time teaching job, it does not dim her memory or ease my heart. I don’t know why, but although I really do like my job, more often than not I think, “I’m only at this job, because Madeline is gone.” Her photo is on my desk and her smile keeps me going throughout the day. So, I am aware, aware of Down Syndrome, aware of the joy it brought into my life and the lessons never to be forgotten.

Below is a post I wrote almost a year ago for “Down Syndrome Day.” I just wanted to share. I want you, Dear Reader, to read and know the value of all life and the next time a child or anyone with Down Syndrome causes you to turn your head, I hope it is with awe and wonder of the joy and love that person has brought into the world.)

I have been doing some lurking around the Down Syndrome Community.  Funny, that I feel the need to lurk.  So many emotions…the heavy hearted longing and wishing that things were different.  That I to could share pictures of Madeline rocking her extra chromosome and discuss the triumph of her hitting her milestones.  What I wouldn’t give for a video of her first steps or first words.   I see the photos of the other children and I can stare for hours.  Sometimes they make me smile.  And other times the tears silently flow.

I have a dear friend with a little girl, Ms. O.  Ms. O and Madeline would have been the same age.  Ms. O’s Mommy asked me once how I felt when I saw Ms. O.  I told her, ” I feel insanely jealous”, not in a hateful way, but in a way of wishing that I could be just like you.  A jealousy that perhaps only a mother of a child with DS would understand.   That instead of me going through hoops to get that Little O to hug me, my own Madeline could be here to warm my heart with snuggles and slobber me with kisses.

Do I still belong to that community?  I don’t know.  But do I care about that community?  WITHOUT A DOUBT.  When I see the other babies and children I think how lucky their family is.  Lucky to be blessed with this incredible person.  I know these families might think I “romanticize” what life would be like with Madeline.  Maybe I do.  I remember it was a lot of work.  Lot’s of appointments, hospitals and therapists.  It was exhausting but the pay off was beyond huge.  One cannot put a price tag on unconditional love.  Giving Madeline life and making that life full of unconditional love and unlimited possibilities.  She was strong in mind and body.  If her body was weak her Spirit was not.

That is what I see in the Down Syndrome Community.  Strength of spirit!  And the unmatched determination for  these children and adults to live a life where the possibilities are endless.   I see a community that wants nothing more than all people to know this about them and their child.  Isn’t that what any parent wants for their child?  I did…I still do.

March 21 is National  Down Syndrome Day.  3-21.  I love it!  I even got the t-shirt.  But this year apparently, they want to spice up the campaign and give it a theme.   Make it “Odd Sock” day or something like that.  I don’t even know the theory behind it.  My beef, why would anyone (especially, working on behalf of Down Syndrome) use the word “Odd” in its campaign?  Instead of helping others to move forward in any archaic beliefs they have about Down Syndrome, doesn’t this take us back to the world where the children were called Mongoloid and thought to have very limited capabilities.

Because I have learned first hand,  more people than you think still hold these beliefs.  The belief that these children and adults are somehow a burden on their families.  Sad but true…in any day and age…but now that we supposedly know better.  More than one person had tried to comfort me with Madeline’s death by telling me she would have had so many challenges in life or questioned who would’ve cared for her.

Don’t we all face challenges of some kind?  Aren’t we all a little “Odd”?  I know I am.  Ask my family, at times it makes me challenging to live with.  My boys would be more than happy to agree.  We are all different.  But for many of us we appear, “normal.”  There are no tell-tale signs of what makes us unique.  For the most part this prevents us from dealing with some long-held beliefs that others might see our life as less than in some way.

But for those who have the extra chromosome their path might not always be as smooth.  They will more than likely confront a road block or two.  Although much progress has been made, we are still in a time when as little as three years ago, when I first learned Madeline had Down Syndrome, I was then offered an appointment to terminate my pregnancy.

In order to challenge and change the belief that life with an extra chromosome is somehow of lesser value or even a “burden” I believe an easy step would be to refrain from using the word “ODD” when showing support for a community we love and care for.   Odd usually has a not so great connotation, like, “Odd man out”, “Odd-ball”, when something doesn’t seem quite right we say, “well, that’s odd.”  I could go on:  but I won’t.

Perhaps I do still have a place in the DS community.  Because when I read or hear things that remind me there are still many archaic beliefs about having a child with Down Syndrome it makes me crazy.  I would gladly work for any child to have the life I wanted for Madeline.  A life any parent would want for any child.  I don’t find that “ODD”… do you?

8 Responses to She Rocks!

  1. Amy says:

    I completely agree! You have many wonderful, valid points.

  2. Carol says:

    As always, I love how you write about Madeline.

  3. Beautiful and completely heart wrenching. You are every bit a part of this community as I am. I have several friends who have lost their children with Down syndrome who I keep in contact with almost every day. They still post pictures. They still remind us that even though it’s super tough, we are lucky. I’m so glad to have found you. I need you. You give me so much perspective and make me want to be a better mom and person.

    • johnnypsmom says:

      Lexi, Thank you! I would love to “meet” your friends who have lost children with Down Syndrome as I don’t know ANYBODY. A bit of a lonely feeling. I am glad to have found you as well. I love that you are tough with a soft heart and we seem to share similar perspectives on life with autism as well. I needed that pat on the back, Thank you, and right back at ya!

  4. Linda says:

    Loved this post. You absolutely have a place in the DS community. Thanks for sharing your heart.

    • johnnypsmom says:

      Linda, Thank you!!!! For me, it is a way to keep Madeline’s spirit alive. I miss her in a way no words can describe! When she died that day someone asked us if we would welcome her back with all that we knew, YES, YES, A MILLION, TRILLION TIMES YES!!! Thank you for listening to what my heart says.

  5. hilary says:

    You definitely belong…

  6. KathyOC says:

    You belong, Amy!!! Don’t ever question that!

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