Nalah's Smile

I was taking photos of Nalah one morning, and as Nalah heard the familiar sounds of the camera on my iPhone, she looked at me and broke out in this grin. I believe she was posing for the next photo. This smile melted my heart that morning, and still does. My lovely girl. Nalah gave and received so much love. Moments like this were breathtaking, especially after being told (by medical community) that she would not engage in a meaningful way with her world. Well, this is how she engaged with us. Love you my girl. For the record, Nalah smiled her first week. It brought me hope, to know she could express happiness, when she fell into heart failure at eight days of age. It helped me have hope there was a quality of life to be saved. Nalah is about 22 months old in this photograph. This photo also has an uncanny resemblance to my childhood photos. I am grateful to have experienced this moment with her. 

Talking to Karis

As soon as Nalah learned to roll, she was 'rolling over' to her big sister, and chatting away. If Karis was sleeping Nalah would roll over and try to bop her on the head, or kick her, to get her attention. We thought that this involved wonderful motor skills, and given that Karis is such a sound sleeper, we let Nalah exercise her new abilities whenever she liked. I am particularly fond of this photo, as this was one of the first times that Nalah was able to roll over to her sister without assistance. The two were so sweet together. I am grateful for all these memories. Our life is so much better because of our little girls. 

Talking to Momma

Nalah talking to her Momma at the Stollery, Winter 2009. Nalah was always very engaging. She interacted with those around her, and paid close attention to those she cared about. Nalah was sociable, just like her big sister. Her eyes lit up when people entered the room. One of my funniest memories is taking her to ER for something or other, and she starting 'flirting' with a male nurse. Not that she knew what flirting was. She was just fond of him because he was so friendly. Nalah did such a good job of 'socializing' that day, that the ER staff largely ignored us because she appeared so 'well'. Notably, my instincts were right. She was admitted for an RT "deep suction" and ended up in the respiratory unit for two weeks. I always loved talking to my girl. The first time Nalah 'conversed' with me she was only four days old. That first conversation brought me hope when she fell into heart failure a few days days later. Nalah's spirit and personality always inspired me. Still do.

If only....

If I could do things all over again, I would take far more than 15,000 photographs of my girls in two years, and would record my children by videotape every single day, at least for a minute or two. Scanning through my images, there are surprises now and then, but I miss capturing something new. This photograph depicts the only day we ever tried pony tails. Nalah was not fond of accessories. Perhaps she had enough, with the occasional oxygen, the g-tube, the continuous feed with her Kangaroo Joey. Nalah despised wearing shoes, or socks, or hair accessories. She tolerated hats and boots  during Canadian winters.  Nalah humoured me this afternoon, but I can tell by her 'squishy brow' that this was not her preference. Nalah had dozens of facial expressions to communicate what she liked, and what she did not. Overall, my daughter was very easy going. This is her "little bit grumpy" face. That said, I still think Nalah looks adorable in this shot.

Nalah, her Toys, and Living in the Moment.

Like any little 'girlie', Nalah loved her toys. We introduced Nalah to her homemade rag dolls ("Dolla") when she was one year old. We had two identical ones from the Old Strathcona Farmer's Market in Edmonton. The same artisan made most of Nalah's "go bags", so this was special to us. They were machine washable, which is important for munchkins with difficult airways and immune systems like our Nalah. Karis was the only other child to handle her toys. Nalah was fond of her dolly. You can just see the sparkle in her eye. Sophie the giraffe (we had four of those) was also a favourite. On this particular date we did a photo-shoot at home with Sophie and Dolla. Some of my sweetest memories are of Nalah turning to give her dolly a hug. A significant feat for a girl we were told ".... would not interact meaningfully with her environment". As another trisomy Mom aptly says on her blog, a photo tells a thousand words. This photo tells me Nalah knows, likes, and interacts with her dolly. Watching Nalah grow was such a blessing. As an aside, this photo also reminds me of how Nalah taught me to live in the moment. When younger, early adulthood, I always struggled to stay in the present. I would concern myself with the past, or worry about the future. Being with Nalah taught me to value the here and now. To see the moments for their intrinsic value. Now that our moments together are past, I value the moments I have to reflect and simply connect with Nalah on a more spiritual level. I cannot express in words what my dear girl has taught me. She certainly changed my life. I walk with a grief I will always carry, but also a contentment that comes from knowing what is truly important, and an ability to shut out all the distractions that keep us from fully living our live. Well, it is interesting where reflecting on a photograph can take me. Every memory of Nalah leads to a life lesson of some sort. Her life was simply that profound. Yes, I admit, proud Momma talking here. I will always be proud of my girl and her legacy in the hearts and minds of those that know and love her.

Morning Coffee with my Girl

Nalah with her Daddy

Nalah with her Daddy at the Stollery Children's Hospital in Edmonton, Alberta. This is where Nalah had her open heart surgery at six weeks of age. In this photo, Nalah is just a little munchkin in the cardiac unit. I love how she looks at her father. She certainly knew her family, and we are glad to know her.

My girls enjoying mealtime together...

Nalah was always entertaining at the dinner table. Before she obtained her custom high chair, Mommy would hold her through every meal. Nalah would follow my fork with her eyes, rolling her head back and forth depending on where I would reach. I do believe she loved food, although all she could 'eat' was Neocate (a pre-digested formula). Nalah always joined in the conversation somehow. When she was older Nalah would swing her whole upper body toward whoever she wanted to be with for a cuddle. At first I was puzzled, since she was sitting so well. Why was she falling over? We learned by asking her questions that she was using her upper body to 'point' to the answer. She was smart, but not in any conventional ways. This photograph always makes me smile. Karis is three here, and was well past using her high chair. Karis insisted to use her high chair this mealtime to be just like Nalah, and sit side by side. The two had such fun being home together. I miss Nalah banging on her GRIP chair when she was excited about something and playing footsie with everyone under the table. Nalah enjoyed mealtime. She was very sociable and we enjoyed mealtimes with her. I would give anything to have my whole family around a dinner table again. As Karis says, those were the 'good old days'.

The medical community will tell you trisomy siblings suffer. A picture tells a thousand words.  I cherish the memories I have of my girls. Ordinary daily things took on a whole new significance when we could do them together. 

Nalah talking to her Momma....

This video is special to me, as the morning we recorded I had just lost 2000 or more videos/photographs when my iPhone got wet. I had begged my husband to upload them, as I was not 'technologically literate' at the time (still learning). He did not get it done.  I was so sad to lose these images. I had a little playtime with Nalah and she was particularly vocal with me that morning. This is not really shown in the video, but what I see is her determination to let me record. Somehow, she sensed how important it was for me I think. She drew me in to her world, and away from my sadness and disappointment. We lost our records of the three months where she was learning at such a rapid pace (for her) and while she was the healthiest ever (in respiratory terms). The photos and videos I began collecting after that loss will always be special to me. I cannot emphasize enough the importance of documenting our children's lives. Each moment we have recorded is absolutely priceless. I love to hear her voice now. We used to play a little game. I would hide my iPhone and set it on record. Nalah always knew, somehow, when it was turned out. She would stop chattering right away. It was a difficult challenge to record her communication, but there were rare times that she cooperated and let us record without going to great lengths. Nalah was always aware of her surroundings. Always engaged. She was far from the girl the medical community led us to believe she would be. We were told she would not interact in a meaningful way. Rather, she communicated constantly and we adored speaking to her in any way we could. There are many ways to speak that are non verbal. Love you Nalah.