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

Smiling at her Daddy

Nalah's face would light up when a family member entered the room. In this photo she is being held by Mommy and smiling at her Daddy. Nalah's smile always makes me smile, even now when I miss her so. Nalah simply was/and IS an adorable daughter. I am disappointed that society in general does not understand or appreciate the value of our 'special kids'. Nalah is an integral, beloved, member of our family. She always will be.

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. 

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.

Thursday, March 29, 2012

Nalah & Karis

One of my greatest joys in life was watching my two girls play together. Love grew so strongly between them. To this day, Karis often opens the window and yells "I love you Nalah" to the heavens. Nalah is in our hearts, and minds, always. This photo speaks volumes about how triosmy siblings know and love their family. Karis often choose to sit with Nalah and play with her, rather than doing something more 'active' which Karis would be capable of. We had many ballet recitals, music concerts, art shows, all presented by Karis for Nalah. I stumbled across this photo today and Nalah's love for her big sister always makes me smile. I am sad these two cannot be together, for now. Just the other day Karis, aged five, asked to be buried beside her sister. We all want to be close, as close as we can be. Nalah, save a place for us. We will all join you someday. 

Wednesday, March 14, 2012

The Presence of Love - Coleridge

And in Life's noisiest hour,
There whispers still the ceaseless Love of Thee,
The heart's Self-solace and soliloquy.

You mould my Hopes, you fashion me within;
And to the leading Love-throb in the Heart
Thro' all my Being, thro' my pulse's beat;
You lie in all my many Thoughts, like Light,
Like the fair light of Dawn, or summer Eve
On rippling Stream, or cloud-reflecting Lake.

And looking to the Heaven, that bends above you,
How oft! I bless the Lot that made me love you.

 - Samuel Taylor Coleridge

My Sweet Girl

My Sweet Girl, 

You inspire me every day.

You are in my thoughts....always.

You have a home in my heart.

Saturday, March 10, 2012


My favourite thing in the world, cuddling both my girls.

time to grieve

Yesterday was a monthly anniversary of Nalah's death. Fifteen months.  I still long for her every day. Miss her every moment. We try to live life to the fullest, to give Karis (Nalah's big sister) the best childhood she can have, and also to be attentive and supportive during her grief. We are all grieving. Always will be. But there are days it it just hard to keep up that facade of managing and of going about life without the sadness. The sadness is always present. It is hard to lose any loved one, let alone a child that is so very precious and so very, very loved. Sometimes I feel like all my 'personal time' gets absorbed in daily life, parenting, career, managing a household. That leaves little time to grieve the way I would like, to spend time with my Angel child. Not a very informative blog, I am afraid. But real. I miss my Nalah. I want to have the world just stop, and let me 'be with her' again.

I guess my point is grieving takes time. And it is time I embrace. I want to have my moments to think of Nalah, to miss her, to focus on her and not all the business around me. I want to be able to sift through photographs, recall memories, chuckle at the funny things she did, remember her personal trait. Her personality. I still want my time with her, and I have learned how to have time with her when she is not physically here. I just need to learn to balance all aspects of my life so that the 'sad days' or hours, or minutes, can blend in with all my other responsibilities, parenting (which I love) and commitments. 

So, already by being able to articulate this. That I can have time with Nalah when she is in the spirit world, I am a little less sad. I just want my moments with her. Hopefully, today when everyone is asleep, we can have some quiet time. Nalah and I.

Tuesday, March 6, 2012

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.

Nalah's Space at the Stollery Children's Hospital

Nalah's space at the Stollery was filled with crafts, art by her sister Karis, balloons, music and lots and lots of love. Nalah spent a fair bit of time in the Children's hospital, mostly because of airway issues. A trache may have benefitted her greatly, but it was not provided (long story). We tried to make her room as cheerful as possible. Her Dad would make huge banners every month for her 'monthly' birthday. Karis (her big sister) made crafts every single day for her little Sis. Mommy contributed some art as well (and endless balloons). Nalah adored the balloons at the foot of her bed. We played with them and she always loved the colours, movement, and designs. Needless to say I miss those days, and I miss my girl. We still keep balloons floating around the house, to remind us of her (not that we ever forget). I treasure all the artwork Karis made for Nalah. It has a special place in her keepsakes. A few staff members have said Nalah had the most cheerful room in the hospital. A bit cluttered, yes (drove our wonderful housekeeper nuts), but comfortable. This was Nalah's room in the cardiac unit. She spent most of her first year here, because after she coded at four months, it was a long slow climb back to 'relative' health and independence. This was our little bubble, and we treasure every moment we shared in this space.