The Simple Things I Miss

I love how Nalah is playing footsie with the paper here. She was always exploring the world, somehow. Often with her feet. Also, Nalah would focus on whatever we were reading and seemed to enjoy the visual stimulation. We had no doubt that her eyesight was good. She startled at a young age to changes in light, and would track us with her eyes and show awareness of her surroundings. As she grew older she enjoyed her Tropical Mobile (went through about four of them, as toys would 'seize up' after about six months of constant motion) and dozen balloons tied to her crib. We both look tired here, and given how little sleep we often had that was sometimes our normal. Still, I do not regret a second and I miss these simple things....doing any daily activity with Nalah was a blessing. I miss having her physically near my heart. Nalah is a little over a year old in these photos.

Nalah's Favorite Toy - the "Bug"

Once Nalah was able to sit more independently in her custom high chair (from the Glenrose Rehabilitation Hospital in Edmonton), she was able to fully enjoy her toys on the tray in front of her. Before getting this GRIP chair, Nalah depended on us to 'present' her with toys, hold them for her, or keep them  in reach. Having this supportive seating with the tray attached was a wonderful change for her. We could all hang out in the same room and she could learn new skills playing with stuff within her reach. Nalah had a special spot in the kitchen, and would play while I puttered, cooked, or cleaned up. With the proper supports, Nalah was able to learn to play more independently. Not that we ever left her alone, playing together was so much fun. But we tried to give her space to learn new things with or without our help. This Lamaze Bug was one of her favourites. One of mine too. You attached it to the tray with a suction cup, it had colours, sounds, shapes, lots of things to hang on to. Nalah learned to grab it, give it a good shake, and make it rattle. Again, a wonderful milestone for a trisomy child. I love this photograph as it shows Nalah exercising her new skill of reaching, grabbing, and you can tell on her face that she is having fun. 

Nice to Meet You....

Nalah getting acquainted with a new teddy, one of the Champion Bears honouring a child from the Stollery Children's Hospital in Edmonton. This bear was personally delivered by the little boy it was named after, during Nalah's PICU stay in December 2009.  This is also one of our few shots of Nalah without clothing. I always frowned on posting photos of my girls with less than full covering and seldom took such photos. However, I am growing more fond to the photos which show Nalah's scars from her open heart surgery (October 2008) and her feeding button (g-Tube) as both were so necessary for her to thrive. It took Nalah a while to warm to new toys. This is her 'observation stage' with this bear. Once the toy passed this phase, she would be more friendly. As an aside, I regret not taking more photos of Nalah without coverings, as I want to remember absolutely everything about her. 

Love does not count Chromosones

This is a bit of a ramble. Came here to upload a photo, and ended up blogging about the value of human life. Started with memories of teething, and it always seems to lead to larger issues.   Here is the ramble :

Nalah loved her little Sophie teething toy. Nalah teethed from six months of age till two years. A good chew toy was essential. We had about four Sophies at any given time, keeping them sterile as possible for her immune system. This photo brings back such good memories of cuddles. I love how Nalah snuggled with her Momma, always touching me gently and resting close to my heart. This little dress is one of the many she had matching her sister. Just this morning Karis asked to wear one of the dresses that remind her of Nalah. Having family time together was such a blessing for us. Nalah is a sweet sweet child and it makes me incredibly sad that society, in general, considers lives of those who are genetically different to be less worthy of living. I wish we lived in a world where difference was accepted and people were valued for who they are, regardless of labels. As any parent knows,  loving a child is an incredibly rewarding experience. And as a dear trisomy mommy friend (Katie Weaver) so aptly says "Love does not count Chromosomes".

As an aside, there are wonderful trisomy awareness logos on various items for sale at cafepress.ca or cafepress.com. A 30% off sale is on this weekend. My family is wearing trisomy awareness t-shirts lately. A way to bring awareness to a condition that is often mis-represented and misunderstood. 

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.