Motor skills. Another challenge, another opportunity to learn something new. Nalah was very fond of her dollies. Actually it took her a few hours to get used to new toys. She noted they were unfamiliar and would have a transition time where she decided whether she liked them or not. The only toy she rejected was a beautiful peacock puppet which was my personal favourite. Nalah never warmed to the peacock. However, this handmade rag dollies from the OSFA (Old Strathcona Farmer's Market) in Edmonton were a definate favourite. Nalah had two rag dollies, and Karis had two larger ones. In this photo Nalah has grabbed the dolly and placed it in her mouth for a kiss. We used the dollies for play therapy often, as Nalah was motivated to hold them, grab them, place them close to her. I was so proud of Nalah in this moment. It is a big deal for a trisomy child to take an object and place it in their mouth. Nalah was always learning. Yes, she was 'delayed', but she learned in her own time. That is all we ever expected of her, and we rejoiced together whenever Nalah became capable of something new. I also remember the look of determination on her face when she was attempting such feats. She was a stubborn little girl, just like her Momma. I am glad we had time to get to know her, her personality, all the ways she was like her family, and the ways she was unique. A precious, precious child. I miss you Nalah.

Nalah at Birth

Nalah was born September 17, 2008 in Saskatoon, Saskatchewan, Canada. Her medical team was not very optimistic, and although I was hopeful, we were terrified she would not be born alive. Nalah surprised by being born alive with Apgars of 6 and 8 (if memory serves correct) and breathing well on her own. Nalah was admitted to NICU as we choose medical intervention to give her a fighting chance at life. This photograph was taken in the Saskatoon NICU days after she was born. Nalah weighted about four pounds at birth, but lost significantly in her early weeks due to her complicated heart and early heart failure. Nalah fell into heart failure at about one week of age. We were crushed. We will always be grateful that her heart was surgically corrected in October 2008 at six weeks of age. Nalah was born with Double Outlet Right Ventricle (DORV), a large VSD, ASD and coarctation of the aorta. A PDA Ligation was performed earlier, but did not improve her cardiac function sufficiently. A complete surgical repair was done at the Stollery Children's Hospital in Edmonton, Alberta. We flew there by air-ambulance Thanksgiving Day, October 13th. I will never forget the sense of relief when Nalah was in good hands, and had an excellent medical team willing to tackle her complex heart. I will always, always be grateful for her good fortune in that way. There were 'Angels' along the way who helped us arrive safely in Edmonton. We faced many challenges in terms of her care, but thank goodness there were people willing to give her the 'fighting chance' we wanted for our child. Nalah grew to a little toddler, who could share clothes with her older sister, and who almost caught up in size. The two are about 20 months apart in age. This early image is typical Nalah. Regardless of her circumstances, she always found a way to kick her feet up and relax. She had the most beautiful temperament. A lovely child.

Two peas in a pod...Karis & Nalah

Two peas in a pod. My girls enjoyed being together. To this day, sibling conflict really bothers Karis. She is upset if her friends argue or fight with their little brothers or sisters. Karis and Nalah just seemed like the kind of sisters that would be best of friends. They learned to communicate with each other, and play together, despite their different abilities.  The world may have viewed them as opposite sides of the spectrum, but to me, their Mom, they had so very much in common. The joy they found in each other is something I will always treasure.

Sisterly Love. Karis was always very protective and nurturing towards Nalah. Karis continues to show these traits with younger children. Karis gravitates to the smaller ones and is very gentle and compassionate with them. She learned this by having a special needs sister. A little sister who taught us so much. 

My sweetheart...enjoying cuddles with Momma and her dolly...about two years old. This photo reminds me of Nalah's calm, affectionate, easy-going disposition. Nalah loved being with her family, she delighted in play time, cuddle time, any together time. So did we. Nalah was very fond of her dolly's and would put her arm around them while she slept. I always found that very sweet. I miss those days of having Nalah on my lap, close to my heart. Nalah would always prefer being held on my left side. Even when very small she would fuss if I tried to hold her the other direction, with her head to my right. Nalah was always clear about her preferences, and she likes to be held by her Momma's heart. I am grateful for every cuddle, and my arms long to hold her still.

A blessing, not a burden ...

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.

A favorite toy...anything Lamaze was great for tactile and sensory stimulation. When Nalah was about a year old she started grinding her teeth. Another trisomy Mom suggested she might be doing it for stimulation and to try more intensive play. We gathered a bunch of great toys, like this Lamaze 'bug' that attached to her custom high chair, and she was so happy playing. Notice she reaches out to grab the toy. Nalah could give this toy a good tug and shake. It had rattles and bright colours....all the stuff a little toddler needs. Nalah was always learning. At her own pace, but always learning something. This photo makes me proud because Nalah had learned motor skills of reaching and grabbing. Again, something we were led to believe she would not/could not do. I miss those days of playing. Play therapy. 

My girlies together

I love how Nalah interacts with her big Sister Karis. Nalah was always so patient and loving with her sister. The two have a special bond. Notice also that Nalah is kicking her legs continually, she loved motion and activity. If she were able to walk, I am sure she would be running around like nobody's business. Nalah thrived on social interaction and stimulation. She is/was very much like her big sister that way. I am so grateful that we were able to get to know Nalah, her personality and to simply spend time with her. Family time is irreplaceable. 


I should mention about the arm splints...they were a temporary thing. Before we knew Nalah had allergies and itchy eyes as a result, she scratched her cornea and caused an abrasion. Nalah wore these splints while her eye was healing. We later used about three different eye drops to keep her eyes comfy. Over the counter stuff and some allergy stuff. Her eyes never gave her trouble after that.

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.

Thanksgiving Weekend, 2010. Karis was teaching Nalah how to enjoy pumpkin pie. The two got very silly together....Nalah always closed her eyes and savoured the moment whenever something made her very happy. Typically she would do this outside, in the sun, wind, or if she enjoyed the sights or smells around her. Nalah was a foodie at heart I think, even though she was tube fed. Nalah was blissful this moment playing with whip cream, and she also was very content making chocolate chip cookies with her Momma. Even though our children do not speak verbally, they can communicate preferences, likes and dislikes. Pumpkin pie with whip cream was a 'like'. I also love seeing my girls play together, those were the most precious moments and the love they share is beautiful. Nalah eye's would light up whenever Karis entered the room. She followed Karis with her eyes, and Karis would tirelessly entertain her little sister. They played together beautifully, despite very different abilities. I will always be proud of Karis for being such a good big Sister to her little Sis with special needs.