A butterfly lights beside us like a sunbeam.

For a brief moment it's glory and beauty belong to our world.

But then it flies on again, and though we wish it could have stayed, we feel so lucky just to have seen it.

Tuesday, January 31, 2012

Nalah at about one year of age, a wonderful milestone for a trisomy child. Nalah had such a beautiful personality and temperament. I would often smile thinking of how she displayed family traits like stubbornness. Lately I have realized she had a good dose of patience and compassion, which she shares with her Opa (grandfather). I love this photo of Nalah. I am so glad for the memories we have.

Nalah, Spring 2010, 18 months old.

A blessing

This post is to explain my intentions with this blog, created a year after Nalah passed. I regret not documenting every day of Nalah's life. While she was here, I wanted to spend each waking moment (which were many) with her and her big Sister. I regret now that I did not document our life more fully at the time. However, those years, months, days, weeks are all so precious to me. My intention now, is simply to show those of you who are interested in learning about Trisomy 18 the joy, love and blessings these children can bring. Further, I want to show that a life lived with Trisomy 18 is not 'incompatible with life' as the medical community constantly states, but rather there is a quality of life that transcends our expectations. Nalah was a peaceful, loving, joyful girl. Nalah faced her challenges with such patience and tenacity. Nalah often surprised us in a good way, and when things got hard she was the strongest of the bunch. Our decision when Nalah was diagnosed was to give her a fighting chance at life. A fair chance. That included medical intervention, which is something Trisomy 18 kids often have to fight hard for. Nalah had her complex heart corrected at six weeks of age. She enjoyed good cardiac function after surgery. We were blessed with two years, two months, and twenty two days before her fateful passing. This time together is an immense blessing and I have absolutely no regrets for any sacrifices we made or challenges we faced. Knowing Nalah made all the difference. As a dear friend has said, "Our lives are better because of our child with Trisomy". I wish society could see the beauty and worth of our children. My hope is that by seeing glimpses into Nalah's life that other's might find some hope and open their minds to children who are complex and /or different.

Monday, January 30, 2012

Nalah at play, at home. Nalah loved her Lamaze toys, anything bright, colourful, and noisy. It was an absolute pleasure to have Nalah with us. I miss these days of playing, learning, loving.

Nalah's gorgeous smile. Right before this photo, I was sitting by Nalah uploading photos on my iPhone. Nalah recognized the sounds of the camera, and gave me this gorgeous smile. Nalah posed for me. A conscious act, from a child who I was told (wrongfully) would not interact in a meaningful way. Nalah interacted constantly. We spoke with everything but words.

One of my favourite memories. Taking Nalah to Hawreluk Park in Edmonton on my Birthday, August 2010. Nalah loved the sights, sounds, sun and wind. It was a glorious summer day and Nalah and I experienced what many take for granted. An afternoon in the Park. I, we, loved it. Nalah spent a fair bit of time talking to the sky that day. Not the only time I felt she was speaking to Angels.

One of our funnier moments. I purchased this spring outfit in May 2010. Nalah's nurse and I tried on the outfit, just for fun, to take some photos. Nalah HATED the hat. Could not get over this strange object on her head. Especially with ladybugs! We were chuckling so hard we forgot, momentarily, to hook up her feeding tube for a few moments. Nalah let us know her preferences, that is for sure. And this hat was not one of them.

Thursday, January 26, 2012

Another time, another place. Still Love.

My desire to blog never took root while Nalah was alive. I could not bear to spend any time writing when all I wanted to do was hold her, play with her, care for her, watch Karis entertain her, and simply BE. Be together. So, here I am. Months after Nalah passed. Fatefully.  I try to focus on what was positive, who she truly is. Not what others have done, or not done, regarding her.

Nalah. I miss you more than words can ever express. There is an emptiness with your physical absence. However, there is a gratefulness that I have not experienced before. The most significant experiences and lessons of my life were with you. You created a space and time for the greatest love. A love that we shared (still do) as a family. A love that grows, even though you are not physically here.

I sense your presence spiritually, however for a Momma that just never seems to be enough. I want to hold you. I long to hold you, care for you, have any of our regular everyday moments back. Anything. I want to re-live those years, months, days. Every moment with you was special. Precious. You taught us that live is not be to be taken for granted. Family is an exceptional bond, or can be. Love can be unconditional, and is most rewarding when it is so.

You are my greatest love and my greatest teacher. A small little person with a very large footprint. I miss you.