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.

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.