Sisters playing.....This photo is taken in Edmonton in the fall of 2009, before Nalah had her tummy surgery and received her G-tube/Nissen. Nalah grew by leaps and bounds after her tummy surgery...she is quite small here, but large in personality and spirit. Karis is trying to be in charge of Nalah's medical needs (which was not allowed, but we let her copy along with her dolly). Here, Karis is preparing to give dolly sterile water. We gave Nalah clear fluids through her tube to keep her hydrated, and boiled her water every day. I miss those days. That routine. Those responsibilities. Caring for Nalah was something I truly enjoyed. My greatest joy, however, was seeing my girls together. Playing, interacting, bonding,  loving each other. I will always treasure moments like these. 

One of my favourite photos of my girl. Nalah was simply sweet. Always sweet. A joy to spend my days with. I loved holding her right here, on my left side, close to my heart. Nalah always preferred being held by my heart too. Nalah would fuss if we tried to do things differently, and hold her on my left. Nalah liked being close to my heartbeat. She still is.

Always....

Sunset Butterfly for Nalah

A lovely image created by CarlyMarie Dudley of Project Heal, Perth, Austrailia. 

Nalah is almost Four!

Nalah, we are busy preparing for your birthday. Both for the party, and emotionally. I miss you every second. I wish I could watch you grow up. I want to hold you. I wish we could be together on this special day. Four seems so old, and young, at the same time. I remember when Karis turned four, it was almost one month after the day you passed. The birthday was hard, terrible, with major meltdowns from all of us. We always associated birthday parties with you. We had a party for you every week when you were little, then every month as you grew older. Our last birthday together was 26 months, November 17, 2010. 

I am so grateful for your birthday. We experienced such a miracle with your birth. You made our family complete, you still do. I want to do all sorts of things you would enjoy on your birthday. We have designated Karis the party-planner and she has some great ideas. Karis is busy decorating all sorts of balloons with messages for you. We will meet at your resting place to sing Happy Birthday. 

My heart was torn to bits the other day when I was in the grocery line. A woman in front of me was buying birthday party supplies. So was I, but for a very different kind of party. One where you will celebrate with all your Angel friends, and hopefully visit us for a while. But one where we celebrate, and long for you, all at the same time.

I will always treasure every moment we had. It just seems that time with a loved one is never long enough.

You are an incredible little girl Nalah. I wish I could watch you grow. You were so mature and wise for your years, even as a toddler. I know you have grown into even a lovelier little girl in the spirit world, where you play now. 

I love you Nalah,

Mommy

Bedtime together, legs always intertwined. Fall 2010.

Teething, but still a glimmer of a smile...


Nalah teethed for about 18 months of her 26 month life. The first tooth was the hardest. It took four weeks to emerge, and then disappeared again the next day. A month of work, for what! Nalah was tube fed, so the teeth always seemed an unnecessary source of discomfort, however, Nalah took it all in stride. She cut about 10 teeth in the months before turning two. Nalah teethed continually from about six months to her last days. This photo reminds me of her quiet strength. She rarely, if ever cried. Nalah was more likely to cry if something did not go her way. For instance, the one night we tried to put the girls to bed at different bedtimes....Nalah did NOT appreciate being put to bed before her big sister. If Nalah ever cried, we generally asked Karis to enter the room and then she would stop. If Nalah did not stop crying when Karis was beside her, then we would consider whether Motrin was necessary....since she hardly ever, every cried, and if she did there might be some pain. I can see that Nalah is under the weather in this photo, I can see the tiredness in her eyes. However, I also see her strength. She was a tenacious little soul. Defying the odds, defying death, for far longer than her medical team expected. My little warrior. Nalah taught us about taking life in stride, and remaining calm, despite any storm.

Nalah and her Daddy

In honour of Father's Day, an early photo of Nalah and her Dad. Nalah is very young here, likely less than six months. Always alert, she was very focussed on family members. She knew us, and how to communicate with each of us. Her Daddy would ask her to do certain things, facial expressions, and she would copy. Daddy was wrapped around her finger. I always enjoyed seeing the love/compassion when they gazed at each other. A favourite memory.

Life Beyond:

It has been a long while since I sat to write here, Nalah's space. The loneliness for my girl is so profound. Life carries on and seems to carry me along with it, broken yet strong. There are so many enduring life lessons that Nalah has taught me. What is important. What is not.  How to truly care, how to truly love. Also, to be loved. Nalah taught me to receive love despite my own imperfections. Being a trisomy parent is a challenge. There is at the constant triage, the medical decisions often without medical training, and too often without a supportive, fair, compassionate medical team. There are sleepless nights, months of them. If lucky, years of them. It is marathon parenting. Now, that I am on the other side all I see is gratefulness, loneliness and love. I am sure other words could be offered and they are not in any particular order. The largest legacy, in life beyond our time together, is love. Love for one's children, one's family, friends, and also, love for oneself. That has been the hardest lesson. Nalah encourages me every day, despite the physical distance. There are always messages of love flowing between us. Today for no apparent reason as I was running my bath, one spot would not take any water, and created a little crater shaped exactly like a heart. The water just kept running around it. No explanation, but that sort of thing continues to happen. Little messages, little signs, and lots of love.

Life beyond is lonely. However, Life beyond is much fuller than it ever could have been before. Nalah opened my eyes to what truly counts in this world, our inner (spiritual) world and how to truly give and receive love (from self and others).

Still, I miss those days. The together days. It has been 18 months now. Too long to be apart from a precious child. It is hard to even recount the stories, I spend most of my day treading water emotionally, trying to hold back tears while I go about my daily tasks, work, parenting, responsibility for a household, and all the rest.

Agape. Eternal love. This is what we are left with now.  Does it make sense to be sad and grateful all at once? Does grieving ever make sense?

Nalah, I am watching Karis play with her little girlfriend here in the house today. It breaks my heart that you can no longer play together. Today I filled out a school application for Kindergarten. Of course, the question "Any preschool siblings?" I answered with your full name and your dates: September 17, 2008 to December 9, 2010. There is NO POSSIBLE way I will ever exclude you from anything we do. Yes, Karis has a sibling. Her residence is Heaven. She is the little sister. Our little sweetheart, always.

I miss you munchkin.

One Extra Chromosome - A Powerful Video created by Katie Weaver, in Honour of Maisie Grace

We Are The World Of Trisomy 13 & 18 -- 2012 Awareness Video

The Lion King -Can you feel the love tonight Elton John - For Nalah

Showered With Love

Sisterly Love. A strong bond which transcends Heaven and Earth. My girls.

Good Night, Sweet Pea

Good Night Nalah. Your family loves you. Always.

Peek - a - Boo

Peek - a - Boo! Nalah's Daddy spent a fair bit of time attempting to teach Nalah this game. Looks like she caught on. This photo shows Nalah in her first year of life...sometime prior to July 2009. Nalah was on high-flow oxygen for a number of months after 'coding' at four months of age. Nalah had what is termed a 'critical' or 'difficult' airway. Despite all her medical complexity, she found energy to play games with us, and simply love and be loved. Our dear little girl.

Smithsonian Folkways - You Are My Little Bird - Elizabeth Mitchell

This is one of our favourite  musical artists. Nalah and I spent many lovely days listening to this music.

Smithsonian Folkways - You Are My Little Bird - Elizabeth Mitchell

It's All Right - Nalah's Very, Very Favorite Song

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. 

Pocketful of Sunshine - Natasha Bedingfield - A Favorite Song of Nalah & Karis

I Miss You

Nalah, you blessed us in countless ways. 
As Karis says "Don't you wish you could go back to the good old days Mommy? The days when Nalah was here with us?"
I do miss those days. 
You brought such joy and taught us to love so deeply.
No one will ever replace you.
There will never be another You.
Your personality always shone bright through whatever life threw your way.
Nalah Mari....
Beloved, wished for child.


Mommy misses You.

We Are The World Of Trisomy 13 & 18 -- 2012 Awareness Video .m4v

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.

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. 

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.

Cuddles

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.

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.

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. 

My Princess

Goodnight...

Night, night, sweet pea. 

Karis' Bad Dream & Nalah's Favorite Song

Oh Nalah, your Big Sister misses you so much. I think she has so many conflicting emotions right now, as she grows into her grief. Karis woke early this morning from a bad dream. Karis says she was playing with you, outside in the pouring rain. You were both listening to Katy Perry on my iPhone. Notably, the bad part of the dream, according to Karis, was not that you were both outside in the rain (apparently without adult supervision). The 'bad part' was losing photos of you together and the music video of Katy Perry! Karis has a bit of a thing for Katy Perry and Hannah Montana. She pretends they come to visit us at our house. Not the best choice of role models, or friends, but then she is  lonely so I allow her this indulgence. I know how you loved your sisters iPod. You would wiggle yourself over to wherever she was playing with it, and practically sit on top of it. You could not get close enough. I can just see you two huddling together watching music videos.

We all know, though, that your favourite artist is SEAL. If it were up to you, he would have had his comeback.

Nalah's all time favourite song is "It's Alright", a cover by Seal on his SOUL album. Nalah always had a blissful/ contented look on her face when she listened to this song. This was the only pop/adult album I downloaded for Nalah. She had a huge music collection of children's music. However, she responded most strongly to Seal. We will get you the new album  Nalah. I promise. 

Why so positive?

I have deliberately chosen to be positive in this blog. To have no complaints, even about those who stood in our way, disrespected my girl, or failed her in some way. The reason is this.... Nalah taught me to be positive. This blog is a tribute to her. Nalah, herself, was always tenacious, patient and tolerant. No pun intended, re 'patient'. So, in honour of my lovely little girl, I will not share here about all the negativity that swirled around her in terms of others attitudes towards her as a trisomy child, a disabled child, a profoundly delayed child, or a paraplegic, or whatever other label you want to throw at her. This blog is about what she taught me, not the challenges others put in her way, or how society mistreated her and those like her.

So, why this explanation? I do not want to mislead others and suggest there are no challenges involved in parenting a trisomy child. Life became a roller-coaster of uncertainty. We had to fight (advocate) for things that are routine for a child without trisomy. We had a huge/massive learning curve as parents of a medically complex child. We faced our child's mortality on a daily basis, while trying to meet needs of our other child and give her a proper childhood.  Life became something we experienced, intensely, moment to moment never knowing what the next days, hours, moments might bring. However that became bearable. Courage created courage. Strength led to more strength. In fact, this life became joyful as we opened our hearts and minds to the miracle in our arms. What seemed overwhelming was, in short, an incredible love story.

The biggest challenge, the ugliest battles, the greatest pain, in my experience, were found in the society surrounding Nalah. The battles she had to face because of her label. A diagnosis that has been historically considered 'incompatible with life'. Nalah was a joy and we embraced her challenges together with courage and strength. I only wish that society as a whole had seen the value and worth in her very human life, and that she did not face the discrimination that so often surrounded her. I also wish that discrimination had not had such a tangible impact on her life.

So, I am not trying to sugar coat things. If anyone wants to hear the 'war stories' they are told many places, by many families, and we have ours as well. I am grateful for the families who have shared their experiences this way. These stories are invaluable. However, I have simply made a choice that I will not tell those stories here.  I want to focus on who Nalah was to her family, not how others defined her. The little girl, not the controversy around promoting her life or her care.

The stories about societal discrimination towards trisomy I will leave for another place and time.

This space is for Nalah. For us to remember, treasure, and document the little moments that were so 'ordinary' and 'extraordinary' at the same time.

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. 

Goodnight Sweetheart

"... Now sleep child of mine as the stars shine above, I love you as much as a Mommy can love".  From "I Love You as Much", the first children's book I read to Nalah. A book carefully chosen while pregnant.

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's Ancestry

Nalah has ancestral roots in various parts of the world. Nalah was born and lived in Western Canada. However, her father's family came to Canada from Jamaica in the 1960s.  There are two families there, the Smiths and the Irvins', near Mandeville.   Nalah's maternal roots are in the Mennonite communities of Russia (her maternal great-grandparents fled after the Russian Revolution) and Prussia (now Poland). There are many strong people in her lineage, particularly her grandparents and great-grandparents. One small comfort now, is knowing that Nalah is in the company of these wise and loving souls. 


As an aside, Karis tells me that Nalah now travels the world. Karis says Nalah travels for a couple of days, they comes to visit her (dreams, or in her spirit form). Karis will say things about the world that puzzle me, such as describing the Eiffel Tower in Paris in detail, or mentioning "the ocean in England is brown". When questioned, Karis says "Nalah told me so". I am glad my girls have a connection in their imagination, dreams, and/or spiritually. I do not discourage it and let Karis express her bond to Nalah any way that she should wish. 


If you are travelling Nalah, I would suggest Jamaica. I am sure the sights, sounds, colours and music would intrigue you my girl. You always loved music, and had the cutest "happy dance". Somehow I felt inspired to mention your Jamaican ancestry today. You have strong roots my girl. Very strong. 


To be honest, if bothers me not knowing exactly where you are, but I am sure all these puzzles will one day be solved when we join you "where you are". 

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.

Mommy's Favorite Photograph

You are beyond sweet, Nalah. Simply adorable my girl.

PRECIOUS CHILD

As Nelson Mandela has said, “there can be no keener revelation of a society’s soul than the way in which it treats its children.”

My Promise

In early days, when all was so uncertain and life swayed in the balance, I came up with a little chant to repeat to Nalah. To encourage each other, i guess. I repeated this often, through tears, in the PICU or NICU, and finally at her grave. Here it is... Unsophisticated but heartfelt:

"I brought you into this world, and I am going to see you through it,
Beginning, middle and end, somehow.
You will never be alone, we will always be together
Our spirits are connected somehow,
You are a part of me, and I am a part of you
We are a family.
Mommy, Daddy, Karis and Nalah.
You have brought such sunshine to our lives,
You are our precious Baby Angel
I brought you into this world, and I am going to see you through it...
With lots and lots and lots of LOVE"

NALAH, YOU ARE LOVED!

I admit, a poet I am not.
A loving Mommy, I will always be,

Happy Birthday Darling Nalah. You will always be my Miracle on earth.

Reflections on the 17th

Nalah, I always struggle on your birthdays. When you were here it was so simple. We had the celebration thing organized every month. We always looked forward to celebrating with you. Now that you have passed it is so much more complicated. We each may be at different "places" in our grief when your birthday comes around. Life continues to swirl sound us. I have spent most of today crying, fretting, worrying, grieving over my Dad's heart failure.

I have returned to one of our special places to mark your birth time. A place i sat with you to think while pregnant. You know where. The 17th will always be special to me. September 17,2008: You were such a little lightning bolt that day. Labour for 1.5 hours and a ten minute delivery. I swear you did all the work as I was feeble and terrified. Not bad for a breech delivery my girl. You sure shocked everyone in the room. Thank goodness a resident was keeping track of us, as we did not even make it to the birthing suite. I will never forget the intense joy and elation when you were placed in my arms, breathing, living, a perfect little child. Daddy and I were lost in the clouds for hours after that. We were overjoyed to meet you. Our love story started the moment we knew of you, and I will always be grateful for the opportunity to say I love you, face to face.

I do not know how to celebrate today. I hold my vigil to honor your birth time. At 5:18 p.m. you entered the " outside world". I do not know how to celebrate your birth in the midst of so much sadness and uncertainty with my father, and his frail health. I am comforted to know that when he arrives in Heaven you will shower him with love, and entertain him endlessly just as your sister does down here. Still, I am selfish and not ready to let him go. Dad has always been my rock. The one person I can turn to. The person I can count on to love me no matter what. I cannot imagine life without him near. This birthday, I suppose I should celebrate life despite it's frailty. Perhaps that is my lesson for today.

I hope you know that I honor your birth time. Your birth was the most terrifying, magical, delightful and overwhelming moment of my life. I hoped for so many months to hold you, kiss you, tell you how much I loved you. You allowed all my dreams to come true. This day will always be special, whether we celebrate in conventional ways or not. As I have said before, your birth is sacred to me. I will always be grateful that you chose me as your Mom.

I love you.

Nalah, I miss you.

Happy 41st Month Birthday Nalah!

Today marks 41 months since Nalah was born. During her life, we celebrated each month. Nalah grew bored of the parties, and began rolling her eyes when the balloons, hats, whistles came out. She never complained, however, about a good cake or cupcakes. We ordered a special cake every month from Fuss Cupcakes in Edmonton. Chocolate with strawberry buttercream frosting. This cake was made for Nalah as a gift by Fuss Cupcakes on her first Heavenly birthday, at 27 months. We received this cake 8 days after Nalah passed away. When I asked who created it, they said "we all did". They all knew of Nalah and her story, because not many kids in Edmonton were ordering cakes each and every month. I will always appreciate their kindness, and I will always treasure those birthday memories, even when Nalah thought we were being silly at the time. Today at 5:18 pm marks the time when Nalah was born. This time will always be sacred to me.

Teething with the Jiggler

I was so proud of Nalah when she learned to put objects in her mouth. Nalah teethed (patiently) from about six months till she passed at two years. This OT toy was great for learning motor skills, and an addition to the impressive teether collection. I miss those days of caring for Nalah. 

Morning Coffee with my Girl

My Valentine

 Nalah, you have taught me how to truly love and be loved. I did not understand unconditional love until my journey with you.  You taught me that I was capable of such love, and receiving the same.You gave so much to your family, more than we could ever give you. I will always be grateful. Each year I will proudly say that you, Nalah (with your sister of course) are My Valentine.

I love you more than I could ever express. My love for you is bigger than the universe, and I hope you can feel my love around you today, especially.

In this photo you are the spitting image of my first grade photo, my first day of school. I think it is quite sweet that we have a photo which shows the resemblance between us. I was fiddling with photos on my iPhone when you gave me this smile. I know you were posing. You never were shy for the camera, and I am glad we have 15,000 photos of you.  I am off to see Opa this morning. I know you are a special Valentine for him too. We all love and miss you today my girl. XXXXXXXXX

Talking to the Sky

 Nalah often had these little conversations with the ceiling, or when outside, with the Sky. I was always amused by these conversations, and more often intrigued. I got the impression Nalah could see and sense more than we, as adults, were aware of around us. I do believe children may be more receptive to the spirit world that way. This is one of my many favourite memories. Sitting on our second floor deck with Nalah in the summertime. At home.  The play therapy toys spread out around us. Having time to talk, explore, play and simply be together. 

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.

Nalah, my Teacher.

Nalah, I had another talk with Opa today about you in his ICU room. We talked of how I learned to open my heart and mind to spirituality, because of my journey with you. Opa remarked "Maybe Nalah was sent here to teach all of us". We spoke of how you are such a blessing, and have taught me so many incredible life lessons. I reassured Dad again of how both you, and he, are not burdens to us, as that is one of his big fears. My Dad loves you so much sweetheart. We also talked of feeling you near, and Opa remarked "I think you feel her presence most of all". I suggested to Opa that if he was open to it, he could likely feel you near too. Opa said he does feel you near. I know you are watching over your family and loving us from where you are. I can assure you that our love for you reaches wherever in the Universe you are too (whether it is Heaven, or you are on a field trip of some sort). Karis keeps reporting about parts of the world you have visited, and telling us details about places we have never been. Karis is calling me, she has me 'skipping rope' with her this morning.

Opa (Grandpa)

Nalah I had a little talk with Opa today about you. He hurts so much since you have been gone. Opa is concerned he is a burden to us now that his heart is so very weak. I told him about how I considered you a blessing each and every moment, regardless of your situation medically. I explained to him that he was a blessing each day he is with us, regardless of his situation now. It helped him to hear this I think. He is so concerned about creating a hardship for his family. Opa had tears in his eyes when I explained to him, again, what you mean to me and that I will always consider you central to my life whether you are here in person or in spirit, that we still speak, and that I have absolutely no regrets about any hardship we went through since our love for you is bigger than anything. It seemed to bring comfort to Dad to know that both you, and him, are blessings no matter what our days may bring. I know Opa will be so very glad to see you in Heaven. I am just not ready to say goodbye to him just yet. I doubt I ever will be. Nalah, your Opa loves you so very, very much. My only comfort will be knowing you are together someday.  When Opa comes, please give him the biggest, longest, most loving hug imaginable. 

The Presence of Love

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.

The Presence of Love
Samuel Taylor Coleridge

Opa (Grandpa)

Dear Nalah ...please watch over your Opa tonight. He is in the same ER where you passed fourteen months ago today. How can this be? I will be keeping vigil tonight until your time of death, 1:28 am, as I do every month on the 8/9th. Opa needs some help from the Angels tonight sweetheart. We need his heart to be strong.  Opa has a special place in his heart for you. We all do.

Angelversary Message for Nalah

Sweet Nalah. I miss you so. We love you bigger than this earth, and our love reaches to wherever you are. Please give Cathal Cartmill an extra hug today, as it is his special day too. I miss you more than I can ever express. I love you as much as a Mommy can love, which is very, very, very, very much. Karis and I look forward to seeing you again. So does Daddy. We are all coming to live with you someday. I am sad not to watch you grow up, but please know I will always be your Momma and I will always love you. Fourteen months today dear girl. Our world was shattered when we said goodbye. We love you. Loving you is worth every tear. I will keep my vigil for you tonight. 1:28 am. Our quiet time. Love you.

GoodNight Nalah...

The first story I ever read to Nalah was very carefully chosen. I selected the book while pregnant, with all the uncertainty her birth would bring. I choose a book that I could read whether she was living, or not, and which conveyed my love to her regardless of what transpired at birth. The last pages of this book, entitled 'I Love You As Much" says the following:

" Now sleep child of mine while the stars shine above, I love you as much as a Mommy can love".

Imagine my joy when I was able to read this passage to Nalah in the NICU when she was a day old, alive, breathing on her own, exceeding everyone's expectations (which were dismal, it seemed I was the only person with any hope). We read this story often, and I highly recommend it. Now that Nalah sleeps with the stars, I still say our little bedtime words, ....sleep child of mine while the stars shine above, I love you as much as a Mommy can love. I am grateful every day for the opportunity to be Nalah's Mom. She has enriched my life in ways that I cannot even express. The photo I have attached was on my desktop so perhaps just a convenient choice, however it shows typical Nalah. Relaxed, comfy, with her 'taking on the world' pose. This photo was taken about two years ago, near Nalah's second Valentines Day. Note the "I love you" pillow at the head of the bed. Love you sweetheart.

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. 

Carrying on with Nalah in my Heart

Just admiring my little girl. She is on my mind constantly. I 'carry on' with her firmly in my heart. I do not like that talk of 'moving on'. I think anyone who speaks of 'moving on' does not understand grief or the reality of losing a child. I much prefer the idea of 'carrying on' with the child a central part of my life, whether they are physically present or not. Nalah is part of the spirit world now. Heaven, or whatever you may call it depending on your beliefs. Nalah still is....I do not talk of her in the past tense. I refuse to. To me, Nalah is as precious as a spirit as she was as a child. I know her earthly life is past, but I will not speak of her as someone who no longer exists. She exists in a realm where I cannot see her, cannot raise her, cannot watch her grow up. But she exists, somewhere. I believe it is Heaven, given her innocent lovely soul. I consider myself a Mommy to a child on earth and a child in Heaven. We cross both realms. We are a family of four, embodied in three. Nalah is still integral to our family and I will not have it any other way. We treasure her. Perhaps I am sensitive on this topic as there are so many others who devalue the life of a developmentally delayed child. Especially those with a trisomy diagnosis. I promised my girl before she was born that I would never complain about any of the challenges we would face together because of her condition, Trisomy 18. I have kept that promise, I think. I would not complain about Nalah, nor would I ever complain about her sister. Children are a precious gift. It took me a long while to learn this. I became a parent later in life, and Nalah forced me to confront the degree of sacrifice I was willing to make. I can honestly say, that any sacrifice we have made pales in comparison to the joy of being my girl's Mom. I am proud to be Nalah's Mom, and I feel fortunate to have this opportunity to parent my girls, even though I miss the one in Heaven every second of every minute of every day. The blessings outweigh the hardships. Learning to love unconditionally and to let go of what does not matter is quite liberating. Thank you Nalah for teaching me what is important, and what is not. You continue to inspire me my girl.

Bedtime Hugs...

Sweet dreams Princess. I treasure all those bedtimes where we could cuddle, read stories, tickle, giggle, share some love. This is one of my favourite photos of my girls. Nalah was catching up with Karis in size, and wearing recent hand me downs. Peas in a pod. The two embraced often. I think they were both happiest in each others arms. The little legs were usually intertwined, like here, and Nalah was often playing footsie. They were drawn to each other. I am so grateful we got to know each other, and that my girls are so close. 

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. 

Easter at the Stollery, May 2009

Nalah in the pretty dress her Daddy bought her for Easter, when Nalah was about 8 months old. This was Nalah's first little dress and we adored putting it on her. I gave Nalah the fuzzy blankie which we thought was like spring grass at the park. Nalah could have sensory play on the blankie, while confined to her hospital bed.  We hid Easter baskets under Nalah's crib that year. Karis was particularly into 'ducks' that spring. I put the cutest little stuffed duck I could find in Karis' Easter basket. The first thing Karis did when she found her basket, was grab that duck, climb onto Nalah's crib and say she wanted to give this gift to her  baby sister. One of many acts of kindness I witnessed between them. Nalah was so tiny in these photos, she reached eleven pounds at one year. Tiny and sweet. Our Princess. 

Coffee Buddies - Summer 2010

Nalah hanging out with her Momma in our kitchen at home, summer of 2010. We loved the GRIP (custom) supported sitting chair Nalah received from the Glenrose Hospital in Edmonton. Nalah could now sit at the dinner table with the rest of us, rather than being held during meals. She gained independence to some degree, and could play with toys on the tray in front of her. We had some great times hanging out with Nalah in her GRIP chair. On this particular morning, Momma was enjoying a coffee and Nalah's excellent company.

Sisters & Best Friends

Nalah and Karis at home in Edmonton, Fall 2009. 

Trisomy Siblings at play...

Karis and Nalah always found a way to play together, despite Nalah's different abilities. Nalah like many trisomy kids was not able to walk, crawl. Some do have better mobility, but Nalah was a paraplegic. Needless to say, there are ways to be active without actually walking. Nalah had the sweetest happy dance. She would kick her feet happily, or swing them both side to side quickly if she was excited. Nalah was very capable with her toes, and constantly removing things, opening things, playing with things with her feet. Karis was brilliant at adapting her play to include Nalah. I will always be proud of Karis for how she entertained and included her little sister. I once asked Karis if anything about Nalah ever made her sad, as Karis often had to sit by as we attended to a medical need or routine. Karis replied "the only time Nalah made me sad is when she died, Mommy". On this date, Karis was attending to her babies, including Nalah and a little dollie. Nalah, for her part, had endless patience for all of Karis' ideas and activities. Nalah's face lit up when Karis entered the room. The two were best of buds. Still are, although now Karis must carry on with a sister in Heaven. My most precious memories are of my girls together. They played beautifully. Nalah has enriched Karis' life and I can see her legacy in her big sister. Karis is so nurturing and compassionate with others, those who are smaller, and those more vulnerable. We are all better people because of our trisomy child. And about the hair, I do admit that we spent more time on other things, and less on Karis' hair while the four of us lived together on Home Care in Edmonton. Karis now has a lovely short hairdo and we attend to it every day. I miss those messy hair days when we just stayed at home and played.