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.

Saturday, March 31, 2012

Nalah, my sweet and strong little girl.

I used to love taking photos of Nalah on her favourite blankies. This blanket was a gift from Child Life at the Stollery Children's Hospital. One of many! There seemed to be a vast number of quilter's that were donating to the kids there. This blanket came with a matching one for her sister, which was nice. Nalah is wearing a hand me down from her sister here. The "Me and my peeps" onesie was given to Karis for her first Easter. Anyone who has had a child with a life-limiting condition will understand what a big deal it is to wear a hand me down. Getting to the point of wearing a siblings clothes is a miracle all in itself. 

Nalah had a number of 'GI' issues. In this photo she still has her NJ tube for feeding. Nalah's quality of life, and comfort, increased significantly after her corrective tummy surgery at 14 months. Nalah had bowel malrotation repair, fundoplication, g-tube inserted, and a few surprises repaired.  Nalah's surgeon found about three things of 'great concern' to him during the surgery, in addition to the bowel malrotation that we were aware of. This included Mekkel's diverticum. Sometimes when I look at these photos I am sad about all the tummy aches and discomfort we tried to manage with meds all those months. We were hesitant to put Nalah through a second surgery after the open heart surgery at six weeks of age. We waited until the tummy issues were 'emergent'. In hindsight, I wish she would have had her tummy repair earlier in life. 

I see a tummy ache in this photo, and that makes me sad. I also see one 'hell of a' strong little girl. Nalah went through life without a complaint. Despite any discomfort she hardly ever cried. Typically, we were left taking clues from slight changes in facial expression as to her comfort level. Nalah was what my favourite auntie would call a 'tough cookie'. She lived her life with tenacity and grace. Caring for her involved moments of mystery, but was ultimately rewarding in ways that I benefit from to this day. I love her so. 

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