A butterfly lights beside us like a sunbeam.

For a brief moment it's glory and beauty belong to our world.

But then it flies on again, and though we wish it could have stayed, we feel so lucky just to have seen it.

Tuesday, January 19, 2016

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

Sunday, January 10, 2016

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.


Friday, June 27, 2014

Tuesday, June 17, 2014

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. 
Nalah, for your 'Birthday'

"Nothing can dim the light 

that shines from within"

Maya Angelou

Yes, I do. Always will. With love.