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.

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.

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.

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.

Nalah at about one year of age, a wonderful milestone for a trisomy child. Nalah had such a beautiful personality and temperament. I would often smile thinking of how she displayed family traits like stubbornness. Lately I have realized she had a good dose of patience and compassion, which she shares with her Opa (grandfather). I love this photo of Nalah. I am so glad for the memories we have.

Another time, another place. Still Love.

My desire to blog never took root while Nalah was alive. I could not bear to spend any time writing when all I wanted to do was hold her, play with her, care for her, watch Karis entertain her, and simply BE. Be together. So, here I am. Months after Nalah passed. Fatefully.  I try to focus on what was positive, who she truly is. Not what others have done, or not done, regarding her.

Nalah. I miss you more than words can ever express. There is an emptiness with your physical absence. However, there is a gratefulness that I have not experienced before. The most significant experiences and lessons of my life were with you. You created a space and time for the greatest love. A love that we shared (still do) as a family. A love that grows, even though you are not physically here.

I sense your presence spiritually, however for a Momma that just never seems to be enough. I want to hold you. I long to hold you, care for you, have any of our regular everyday moments back. Anything. I want to re-live those years, months, days. Every moment with you was special. Precious. You taught us that live is not be to be taken for granted. Family is an exceptional bond, or can be. Love can be unconditional, and is most rewarding when it is so.

You are my greatest love and my greatest teacher. A small little person with a very large footprint. I miss you.