We still hold you close, my child. 

Your big sister is eleven years old now, and has started grade six. 

I was touched to see that on her "About Me" project for school she described herself as, among other things, a Sister. 

So many think of Karis as an only child, but she is truly a surviving/ living child. A sibling.

Although she was little when you were here, she still remembers you and holds space in her heart for you.

We all do.

I love this photo of my daughter Nalah. Doctors advised, prior to birth, that Nalah would likely not interact with her family. Well, she interacted ALL the time. She communicated volumes without saying a spoken word. Body language, hundreds of facial expressions, and the sweetest noises that could be made. Sounded like singing to me. On this day, I was fiddling with my iPhone, something I regret doing so much in her presence, and Nalah turned to me and put on a big smile for the camera. This smile is exactly like my smile on my first day of grade one photo. She looks exactly like me in this picture, my child. I treasure the smile, and I treasure the connection. 

Love you baby girl.

Remembering my Love on her Tenth Birthday

I have candles burning, and lights dimmed. I am spending a morning remembering the most precious little girl. I am eternally grateful for the opportunity to be your Mom, Nalah. You and your sister are my greatest loves, and greatest teachers. 

I miss you my girl. I have searched through old photos this morning and cherish all the memories we captured, and those which are more fleeting. Some things are ingrained in my mind. I remember your smile. I remember you closing your eyes, tilting your head back, when you were experiencing bliss. I remember the other times too, the times you struggled, the times we tried to manage your pain. I always saw you as much bigger than that. So much more than your medically complex physical being. An old soul. A companion. My beloved.

I have many new plants in your honour today, and the trees I have planted for you are growing big and strong. I have harvested herbs today and strung them throughout the house. The fragrance is lovely. You always appreciated a sensory garden.

I found a scrapbook of art today that your sister created for you while you were in hospital. She was two, but such a colourful artist. You always loved the bright colours adorning your walls.

We honour you today Nalah. We will have the traditional party. Pizza, a vanilla cake, and chocolate cupcakes with strawberry buttercream. Your signature. We will light birthday candles and sing to you. My sister will release balloons at your birth time, 5:18 pm. 

I am quite pleased that the Emmy's fall on your 10th Birthday evening. You know I have loved hollywood red carpets since I was a tiny girl. I /we are SO cheering on a fellow Canadian, Sandra Oh. 

I don't know where you are in the spirit world, this universe or the next. I know you are free to travel and explore wherever your spirit leads you. I don't want to hold you down. I don't want to hold you back. 

We will hold you close in our hearts as we always do, but please know our love reaches you wherever you are. Our love is bigger than this world, and bigger than a physical life. 

You are my precious baby girl, growing up in the spirit world.

I love you and I honour you.

Thank you for the precious gift of sharing some time on this earth.

Love, 

Momma

Family of four...

The four of us together. Shortly before Nalah was born.

Family of four, embodied in three. That is how I see us. Always.

Five Years On...

It has been five years since that horrible fateful day. I am five years into my grief, and as others have said, ready to take some responsibility for it.

That said, I will never stop being your mother. You are part of me, and I am part of you. I remember you, I cherish you, I imagine you, with each breath I take.

It is different, trying to 'carry on' (i.e. carrying you in my heart) from day to day, week to week, month to month, year to year. Time slows, quickens, live goes on regardless of what I feel, thing, long for, remember.

I hear that many trisomy babies and children have passed recently. Eight families, at least, now facing that immense challenge of their child no longer physically present. My heart goes out to them.

I do not think I could ever face this grief journey again. I do not know how parents who have lost multiple children continue to live, breath, function.

For me, I will hold you, cherish you, remember you. I know you are always going to be a part of me. An integral part.

I miss you my dear daughter.

You have taught me so much about love. I treasure your lessons to. I love you right back, bigger than the world can see, bigger than we could ever imagine.

My heart Nalah, I offer you my heart.

Love, Momma

It's been too long

It has been far too long since I visited this page. Visit, such a strange word, for an outpouring of one's heart about one's own child. I found it too painful for a long while, to even be near here.

I used to feel Nalah's absence with each breath I took. Now, I feel her presence.

Still, there is no heartbreak like the physical separation from a well loved child.

That said, I am grateful. I know that is a cliche word these days. But, with Nalah, I actually feel it. I am grateful for my little teacher (Nalah). I am grateful for each moment we were together. I am grateful that we could know each other, to the extent we did/do. I am grateful for the opportunity to love her unconditionally, and to learn to love myself  ( a little more) in the process.

My life changed forever when I lost her. In some ways, that is when life started.  Nalah opened my mind, opened my heart, and I will never be the same.

Thank you Nalah, for changing my world irrevocably.

Momma

Join my 'skip a latter honour a child' campaign..... please give to Memorial Gravestone for Nalah Mari http://t.co/PHCWps7Ylm via @gofundme
— Marianne Friesen (@loveyourkids2) June 27, 2014

NALAH MARI FRIESEN SMITH - A TRISOMY 18 JOURNEY: How I remember Nalah, always attentive to her fami...

NALAH MARI FRIESEN SMITH - A TRISOMY 18 JOURNEY: How I remember Nalah, always attentive to her fami...: How I remember Nalah, always attentive to her family, always a shining light, always making the best of any situation.  This smile melts ...

How I remember Nalah, always attentive to her family, always a shining light, always making the best of any situation.  This smile melts my heart.

A trisomy friend, Abigail's Mom Amber Almeida, posted this quote today and I find it very fitting for our experience of parenting a trisomy child. I see this as a positive. All that is non-essential washes away, only what has true value remains.  Priorities are shifted as life is tumbled upside down. You are left creating a life that has meaning, true meaning. You are left facing, and learning to love, your true self. 

"Adversity is like a strong wind. It tears away from us all but the things that cannot be torn, so that we see ourselves as we truly are"   

Arthur Golden

For any trisomy parents, especially those carrying a child yet to be born, I want to say please have courage.  Enjoy every precious moment you have together.  Know that the experience will change you in positive ways, even though it feels as though you are being ripped apart in the arms of a storm. What remains will be worthwhile. Your experience with your child is a true gift.  Nothing can take away the love you share, not death, not anything.  A loving family is something worth the adversity. I pray you will have strength and hope.