For My T21 Sisters

Yesterday, a mom in our T21 group lost her precious daughter.  Renee was 10 years old, and had Down syndrome and Cystic Fibrosis.  She was a beautiful little girl, and all of us in our "sisterhood" are reeling from the news - saddened in a deep, soulful way, and wishing we could somehow pray it, or hug it, or wish it away.  Why must it be real?

Some of us have commented today on this community of ours - how we are so ingrained in one another by the simple addition of an extra chromosome into one of our children.   How we have extracted so much joy from one another, so much knowledge, so much love.   Yet, we have also handled more than our share of saddnesses, as we have had to say good-bye to many that we loved so dearly.  There have been too many good-byes, and sadly, there will be more.

Just yesterday, I was commenting on another friend's blog about that fear of death, especially in our children with special needs.   I live every day with that fear in the back of my head.   As I said to her, I think it comes from our realization that there truly are no guarantees in this world.  

We have learned that lesson for real, not in the abstract.   We know that statistics, like 1 in 800 babies are born with Down syndrome really doesn't mean all that much until you are that one.  That the termination rate of 7 or 8 per every 10 diagnosed prenatally is just a number, until your heart aches for the real knowledge of what has been lost. 

We are told that when we become mothers, we learn to wear our hearts outside of our bodies.  And all of us would agree that is true.  I could never have even begun to comprehend how deeply I could love, how deeply I could be in love, until Dakotah arrived.  And it is a sustainable love - 17 years later, and I'm missing her terribly today, as she has been off at Leadership Camp for two days.

Two days.   And I can't wait to get her in the house, to find out about every detail of the last two days.  Of course, an hour in to the discussion, I'll forget how quiet it was while she was gone, but I will be happy just the same that she is here.

I feel the same ache of missing Paige when we are apart.  Every day, I am happy and excited to see when her bus arrives.  I can't wait to talk to her, and just be near her.

And perhaps its because Dakotah has begun to spread her arms widely and is ready to fly away a bit that I don't feel quite the same frailty with her as I do with Paige.  Paige needs me for nearly every aspect of her life, and most likely, it will always be that way.   I will be happy and honoured to feel needed by her until my days have come to an end.

Perhaps its because we are aware that there is a very real campaign for eliminating children with T21. Perhaps its because we are aware that sometimes our little ones are born with very real health problems; health problems that make things like developmental delays seem like a walk in the sun.  Perhaps its because so many of us have held vigil for one another's children, as we've prayed, and hoped, and celebrated, and cried.

And, perhaps its because each of us have been thrust, either softly, lovingly, or cruelly and forcefully into a world we knew nothing about.  Each of us carries in our souls that story - that story of when we first found out that T21 would play a significant role in our lives.   Some of us knew prenatally, some of us knew only at birth. Some of us received the news in sweet, wonderful ways, and some of us, not so much.

Regardless, we all carry that "freeze frame" moment.  That exact moment when we realized our lives had changed significantly, drastically, forever.  That moment swept us off our feet, and hit us with the realization that a single moment, a blink of an eye, a nanosecond on a clock, can make our hearts stop beating for a second, can make the whole room feel like one single speck of light.

Since that moment, we have been engrained into one another's hearts, knowing that that single moment empowered us, made us stronger, made us laugh longer and cry harder.   That moment, someone turned the light switch on, and our souls opened a bit wider - just wider enough to fit an extra chromosome into. 

We live with great joy, great celebration, great pride in our children.   We spend most of our days in awe of our luck - the luck of having these amazing people in our lives.

And, we live with a tiny little spot in the back of our minds that won't quite let us forget that real life is just that - fleeting, dashing, flitting about in front of us,  begging us to hold on while we can, because we never quite know when it will change again, in just that blink.

For my T21 friends, and sisters,  who are all wishing we could erase that cyberspace between us right now; who have laughed and cried and celebrated with me, I want you to know you are all very real. 

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"What is REAL?" asked the Rabbit one day, when they were lying side by side near the nursery fender, before Nana came to tidy the room. "Does it mean having things that buzz inside you and a stick-out handle?"


"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real."

"Does it hurt?" asked the Rabbit.

"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."

"Does it happen all at once, like being wound up," he asked, "or bit by bit?"

"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."

My Poor Blog

My poor blog has fallen victim to evil Facebook! I so often feel like I have a post to make, and then get distracted, and don't make it. Its as if I'm overwhelmed by all the different things I want to post that I end up posting nothing!

At any rate, Fall is arriving here at our house, the mornings are cool and everyone has their official back-to-school cough and cold. Dakotah has entered her Senior year at high school, and has hit the ground running. She is heading off to Leadership Camp in a few weeks, and is busy helping organize that. She is on student council, and student council is very active in her school. This morning, she left the house with lots of "spirit" clothes for spirit day, and is part of her school's improv group that is meeting at *yikes* 7 a.m. some mornings. That means her leaving the house at 6:15, and getting up at 5:30. What a big change from her lazy days of summer where I would finally get exasperated at her at 2 p.m. and tell her "enough already!" - get out of bed!!!

Paige is in Grade 7 this year, and has switched schools, as well as school boards. This means a whole lot of new people to meet, a whole new building, new routines, and lots of new things to get used to, for both of us. So far, it has been an incredibly good choice. The school has been so very welcoming to her, geniunely wanting to learn about her, and to meet her needs. Her classroom teacher seems amazing so far, and is so good at inclusion for her. He has a son with autism, who is quite a bit younger than Paige, so perhaps he is seeing his future in her eyes in a way, and wanting to make her classroom experience positive.

It seems everywhere we go, we are always meeting new people who's lives have somehow been touched in a positive way by someone with developmental delays, or physical disabilities. What a blessing this journey has continued to be for our family.

I took the summer off from my job, to spend with my kids. It was glorious, and in the fashion of Seinfeld's "Summer of George", I lavished in it. It was so nice to be near them every day, literally spending every moment of the summer with Paige, and as many as Dakotah's busy social schedule would allow. We swam and soaked in the sun, and cooked on the barbeque, and went on little road trips, and did all of those things that we wouldn't have been able to do if I had worked. We even watched Big Brother, lol.

So. now I am job hunting, and sort of excited to see what the next adventure in life will bring to me. Always the optimist, I continue to feel as if I have a real purpose here on this great big planet, and know that the opportunity to explore that still lays before me in some form.

I guess that is really the essence of life - to look forward to what is to come, happy to know it will be as awesome as we allow it to be, and sure that we can handle to stumble stones along the way.

Happy New Year!

Wow - 2010 is here! And so....here we come 2010!

Its a quiet day in my house, the snow is falling steady and lightly outside, Dakotah is still sleeping, Paige is watching her Sesame Street New Year video for the 200th time, and I'm trying to be all reflective and contemplative.

I'm contemplating resolutions, and wondering which ones I should make, which ones I should ignore, and which ones I might actually keep! I'm not feeling ready to gear up for a brand new year just yet, so I think I'm going to wallow in this semi-holiday weekend, and commit only on Monday.

One thing I have thought a lot about for the new year is where my blog is going. Since joining facebook, I have sorely neglected blogging. I have always maintained that I wanted my blog to be a sort of gift to my children - a chronicle of their daily lives, my thoughts as a Mom as I raised them, and a place where they would know the real me - free of the everyday stuff like laundry that never ends, lol.

As Dakotah gets older, I'm more cautious about what I post about her, as she has the right to pick and choose what stories I share, no matter how cute or funny I think they are. :) She is so quickly becoming a young woman, and not only my oldest daughter, but a wonderful friend as well.

I think, especially as Moms, we hold so much history for our children - stories that are never remembered or repeated except by us. Family histories, and just funny moments we hold on to of our kids that only we share.

Its something I've always thought about - how so much of that goes with us, and unless we get it down, it gets forgotten.

A couple of months ago, I stumbled about a great idea, called "Journal In A Jar" which is basically a series of questions that are posed to help you get started on writing down the important stuff. I think this would be such a wonderful gift to give to someone - and then, in return, a wonderful gift to receive when it was all done - the chronicles of someone's life.

So, because my blog means so much to me, and because I've slacked off on the every day musings of our life, I will be relying on some of these questions to keep my posts going. Randomly, I'll post a question and then journal about it, in no particular order other than what catches my eye on that day.

I hope some of my friends and readers will find some inspiration and lead me to their blogs where they answer some of these same questions. And who knows, some of you may find yourselves the subject of my day's post! :)