By Mike Muschta | March 21st, 2014

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“So who won, the tortoise or the hare?”

Ask me this question every five years and each time I’ll give you a different answer.

The answers change but the only certainty is that they will keep changing.  Change is the only thing I’m really sure of, and the paradox is that change is of itself… unchanging.

Back to Aesop’s fable.   Common knowledge puts that green-shelled protagonist as the crowd favourite, while that unfocused hare could have the winner’s ribbon all for the want of a bit of humility.  The lesson is in the mindset and the definitions of winning and losing are all relative.  My answer to the question took a quantum shift this five-year-mark.

“Neither. “

“Neither won?”  the passerby interrupted, quizzically.

“Both.”

“Both what… won?”

“Yes, that too.”With that, Passerby half-rolled his eyes, installed his blinders and refocused his tweeting.

Since the last five-year interval (where for the record, I was hedged on the tortoise camp) my definitions have shifted somewhat from the absolutes of winning/losing  to the myriad of relatives in between.   In that time, we grew our little family of three to include one more, a beautiful little man with Trisomy 21 who, on a daily basis, single-handedly redefines the tortoise and the hare for us:  wanting to know which racer wins is akin to asking what colour shoes the rabbit was wearing (actually for the record, one shoe is red).  The old goal recedes into triviality when the prize is the race itself.

What gives meaning is that the child we have now is more powerful than the rules of the race.   This child redefines the entire framework of the race itself.  It’s  not about where or how we end up, rather the beauty of the journey that gives every day its fragrance.

This 3/21 is a road marker my fingers graze as I glance back over my shoulder.  The footsteps on the road behind a collection of tip-toes, shuffling, and dancing.   This dad’s feet left the ground at times when he was either floating, or when he was being carried.  Sometimes it was hard to tell the difference.

As much as those footsteps changed, what did not change was that they were steady, and that they led to this mark on the road.  When we get to the finish line, and who gets there first is so less fulfilling than the footsteps we will create getting there.  That race is worth telling.  See you at the next road marker.

By Jennifer Crowson | March 21st, 2014

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What do you do when you are pregnant and find out your baby has Down syndrome or that he or she may be born with another disability? What do you say to people who see you are pregnant and congratulate you and talk about how excited you must be – when actually you are still coming to terms with being told your baby will not be what you expected? I think every parent does and should handle this in his or her own way; here is how I came to accept and embrace the fact that our son had Down syndrome.

The morning I found out our baby was going to have Down syndrome; my husband came home immediately from work. When he arrived, I was at the front door with my coat on saying “we are going out”. I thought to myself if I am in public, I won’t cry. Although very sad, my strategy worked and I did not cry (yet). We went to our favorite local and familiar café. There we sat, speaking very little to one another – just eating our comfort foods. He gave me warm smiles and occasional winks, with his familiar reassuring look telling me everything was going to be ok. But was it going to be okay…. I was not sure.

The next day, I went for a walk and passed a young woman with Down syndrome. She was smiling, walking alone carrying her shopping and talking to herself. She looked happy, independent and safe in our small community. But there and then – I cried – did I ever cry. Was this the future for my child, and if so was this a bad thing?

As a parent, you want your children to grow up, be healthy, and live strong, happy and independent lives. The little knowledge I had of Down syndrome suggested this was not going to be the reality for my son. As I continued my walk and gathered my emotions, I concluded that I must find a way to have those same hopes and dreams for my unborn son that I had for his older brothers – but with the best understanding possible of what Down Syndrome will mean for him and our family. I did not try to fool myself in thinking this would be easy, but I knew I needed to find the strength to come to that place of acceptance.

The hospital put me in touch with another parent who was happy to speak with parents who had just received a diagnosis. I was nervous about calling her – as I questioned my ability to speak with another mother without becoming overly emotional. I felt raw and vulnerable, but knew I would find it helpful and made the call. She was immediately warm and friendly and invited me to her home to meet her son and hear her story. When I walked in her front door I was greeted by her generous smile, and the one of the most beautiful little boys I have ever seen. She beamed with pride over his many accomplishments in his first two years, but was honest with me about the emotional roller coaster she and her partner had been on and the challenges they had faced. It was an emotional visit, but I left her home feeling uplifted and inspired.

I then turned to books and the Internet to help me understand more about Down syndrome. Some sites were helpful, while others were not. I learned quickly which ones to avoid, and the ones that kept drawing me back. I found reading books and blogs written by other parents of children with Down syndrome most valuable. I also joined my local association – the Down Syndrome Association of Hamilton. All of this helped to see that despite some inevitable challenges, some possible health concerns – raising a child with Down syndrome could also be an enriching and wonderful journey.

As I came to accept my new reality, I needed people to know our child had Down syndrome. I did not want people to see him when he was born and ‘wonder’ if there was something ‘different’ about him. I told family and friends immediately when I saw them. All of whom were very supportive. When people asked how things were going with the pregnancy – I told them. One person was quick to tell me that “they sometimes get it wrong” and the baby may be just fine. I assured her my baby did in fact have Down syndrome and this was okay. Some people were shocked by how candid I was; but most had only positive things to say about my raw honesty.

Every parent needs to figure this one out for themselves. Learning your baby is not going to be what you expected hurts – you grieve what you think you have lost or what might have been. You are fearful of what the future holds for your child and your family. You worry about their health, you worry other children will bully them; you worry if they will ever be able to live independently –this list could go on. In my case, I experienced all those worries and I still do – but through reading books and blogs, speaking to other parents, becoming friends with other parents and joining the Down Syndrome Community – and leaning on my family and friends helped me.

I came to embrace the fact that our son would have Down syndrome and prepared myself for how this would change my world in so many new and wonderful ways.

By Adelle Purdham | February 14, 2014

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1. She is cute as a button. But then, doesn’t everyone think their baby is cute? (Mine really is!)

2. She has her own distinct personality, and gives really funny dirty looks.

3. She dances to the music.

4. She lets me know how she is feeling; and she is not always happy, though I would like her to be.

5. When it comes to developmental milestones, she always gets there, but in her own time. She has shown me the sky is the limit and to set my expectations high if that is where I want her to go.

6. Her small stature makes her easy to snuggle, and baby snuggles are the best kind.

7. She is a humble fighter. She survived life-saving surgery at a day old and definitely did not complain about it.

8. She plays games, and loves to play peek-a-boo!

9. She fixes her gaze on me and watches me intently. I get her undivided attention.

10. She helps others to see the beauty within themselves and those around them.

11. She never asks for anything, other than to be loved.

12. She helps me see the meaning of life goes much deeper than good grades, a great job and a fancy home; and that we all have an obligation to look after each other.

13. She introduced me to a caring community of people and helped me make many new friends — wonderful people — I may never have had the opportunity to meet otherwise.

14. She taught me the value of every life, and reminds me of the need to regard and treat everyone equally.

15. She exemplifies that appearances can be deceiving. There is often much more going on than meets the eye.

16. She has shown me that from the greatest heart ache imaginable can come the most beautiful joy.

17. She has made me a better person.

18. She strengthens and reaffirms my respect for education. The more we know, the better off we all are, especially when it comes to understanding each other.

19. She reminds me that everyone has talents, gifts and abilities to share with the world. You just have to look for them.

20. She strengthens our family in places we didn’t even know were weaknesses.

21. And, the number 1 reason why I love my baby with Down syndrome is because she is MY baby and I wouldn’t change her for the world.

My daughter Elyse has Down syndrome and is 14 months old. Down syndrome is a different genetic arrangement that is characterized by a tripling of the 21{+s}t chromosome, which is why I have composed 21 reasons.

World Down Syndrome Day is celebrated on March 21. May you also celebrate those whom you love in your life, and acknowledge and embrace all of our beautiful differences. Happy Valentine’s Day.

Adelle Purdham is the mother of two who lives in Ancaster.