Watch “Samoan mother with brittle bone disease struggles to look after her baby” on YouTube


This video touched me so deeply at every level.

I was petrified of holding Vic as a baby.  I was even more petrified of anyone else holding my baby.   I had a strict “Look but don’t touch” policy.

“Don’t worry,” people said. “She won’t break.”

Vic’s first known fracture was at the age of 3 weeks.  She sucked her little thumb and fractured it…  By her 3rd birthday Vic had had 41 fractures.

Vic with her right leg in plaster-of-paris

As she grew older she became more careful.  Physiotherapy strengthened her muscle and the stronger muscles protected the bone… By the time she celebrated her 18th birthday, Vic believed that she was invincible.

At the tender age of 21 Vic got married.  When Colin proposed I cried and asked him whether he was aware what life with my OI child would mean…  Of course he did and despite my pleading and sermons about the danger of pregnancy, Vic fell pregnant 6 weeks after the wedding…

Vic embraced her pregnancy as she embraced life.  She survived the pregnancy and the birth.

Jared was six weeks old when Vic started battling to pick him up.  Her little wrists deteriorated to such an extent that she needed surgery to both wrists when he was 7 months old.

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Baby Jared stayed with us for a couple of week whilst Vic recovered.

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It was the first time in my life that I felt useless, hopeless and helpless.  I could do nothing for my child.  I had been relegated from being “the Mother” to being “the mother-in-law”.  My position in the family had changed forever.

When I watched this video I was catapulted back into Vic’s desperate attempt at living a full and normal life.

I remember my blind anger at Vic for falling pregnant…. Unknown number of fractures…Untold pain.

I remember Vicky believed that she was invincible…

I remember KNOWING that “Babies break bones…”

 

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Time to say goodbye


Time to say Goodbye is a beautiful song and I especially enjoy the André Bochelli and Sarah Brightman version. It was the boys and my theme song on this holiday. A Time to Say Goodbye and heal….

As we toured Europe we lived Vic’s dream. It was her dream to go to Italy, stand in the Cistern Chapel, drink cuppachino’s on the streets of Rome, wander through the Christmas Mart stalls savouring the smell of Gluhwein and melted cheese….

I am filled with profound sadness every time I think of my child. Even if she lived Vic would never have been able to make the trip. The flight would have been too long, the cobblestone streets impossible for her wheelchair, the bus trips too long…

I cried when I saw the Pietà in the Cistern Chapel. This beautiful piece of art in a convoluted way symbolised Vic and my lives…

Both Mary and I were child brides. She was much younger than I was when she gave birth to Jesus – it is written that Mary was 12 years old at the time of her Son’s birth. Her child filled with wisdom and teaching as was mine… I once again realised, on this trip, how infinitely wise Vic was. She knew that I would have to remove myself from everyday life to heal.

She made me promise to do this trip with the boys.

Looking at the Pietà I saw a mother holding the body of her lifeless child. Tears filled my soul when I remembered holding the body of my lifeless child. For a fleeting moment I felt the heat that radiated from her fever wracked little body. I could hear the thundering silence from her breathing that had stopped…

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I saw the lonely sadness of a mother isolated from the world in her grief. I recognised that isolation that I experienced at the second of Vicky’s death.

I stood there and realised that it will never change. I will always be isolated in my grief and longing for the child that I lived for. No one in the world could possibly love her the way I did. She was blood of my blood.

She loved her boys the way I loved her. She loved her boys with every fibre in her body. Her thoughts, fears and sorrow centred on her sons until she breathed her last breath. The blood of her blood. Her future…

Standing in front of the Pietà I realised that the closest bond is the bond between a mother and a child. Not a child and a mother…. Children move on and live for their children

Walking the streets of Europe I was filled with an all-consuming anger. Anger at God, anger at careless doctors; angry at a horrific disease called Osteogenesis Imperfecta. I was angry at the fact that my child was robbed. Robbed of a life with her boys. That I was robbed of a lifetime with my child.

As the old Year is edging towards the New I am filled with trepidation and horrific sadness. Not only for my Vic but for the many who crossed my path this year and who are enfolded in their own grief.

So much pain, longing and sadness as we look to starting another year without our loved ones.

I have survived my birthday, Christmas Eve, Christmas Day and Jared’s birthday. I have cried on my own, in the shower, in shops. I have been filled with rage and despair when I saw all the Christmas cards “For my Daughter”… I will never buy another card for my precious child. I will never be able to open gifts with her under the Christmas tree. Nothing will ever be the same again.

In three weeks’ time it will be Vic’s 2 year anniversary. Two long years without my child, my best friend…

I read that it gets worse as time goes by. It does get worse. The raw sadness has dissolved into a steady all-consuming pain. The longing to hold her one more time overwhelming.

And, although I know that it is Time to Say Goodbye I know I will never move on.

486 days…


486 days; 1 year, 4 months; 69 weeks….

Oh dear God, will this pain never stop? Will my heart ever heal? Will I ever be able to look at a photograph without tears welling up in my eyes? No matter where I am or who I am with – I miss my precious Angel Child.

I know your pain is over. Remember the night you crawled into bed with me and I told you that I looked forward to your pain being over? Did you know that night how many tears I would shed for you? Did you know that my life would change forever?

Yes, I know you did. Your words echo through my mind…”Mommy, I am so worried about you. How will you cope when I am gone?”

My stock standard reply was “I will cope baby. I will remember your pain and be glad that it is over”. How stupid of me.

As time goes by I forget how sick you were my precious little one.

Then I look through my photos. I see your pain. I see death in your beautiful eyes.

You knew how hard it would be. In your infinite wisdom you tried to prepare me. You tried to prepare the boys… Sweetie, nobody or nothing in the world could have prepared me for the pain, the loneliness, the void…

Sometimes I wonder how many days it will be until we meet again. I pray it is soon. This is just too hard.

One year today


My precious child

Somehow 31,536,000 seconds or even 525,600 minutes makes far more sense than 8760 hours; 365 days; 52 weeks and one day or 1 year…

If feels as if a lifetime of sorrow has passed since you stopped breathing.  If feels as if it has been a lifetime since I held you in my arms.  It feels as if I have cried an ocean of tears.

In the past year I have aged.  I have gained weight. I have existed. A year ago my life ended.  The boys and I still burn candles for you.

I am still filled with rage.  I know you were born with Osteogenesis Imperfecta but doctor arrogance caused you so much pain, suffering and indignity.  I know that you would more than likely have died before me but perhaps with less suffering?

I will always miss you.  I will always remember your smile, your laugh, your bravery. I will never forget how you fought to live.

Today I want to thank you for my beautiful grandsons.  Thank you for remaining my little girl through-out your life.  Thank you for fighting for so long.  You were such a warrior!

I thank God that you came home to die.  I thank God that I had the privilege of caring for you.  I thank God that He entrusted me with something as pure and precious as you.

I am grateful that you are no longer fracturing vertebrae from vomiting.  As much as I miss your laugh I do not miss your pain filled tears.  I am grateful precious baby that your suffering is over.

I miss your company.  I miss our late night chats, drinking untold cups of tea/coffee.  I miss your text messages, your telephone calls, your shuffling footsteps down the passage…  the smell of smoke alerting me that you are awake and sitting on your step…

I miss the boys laughter.  I miss the joy that you brought into our lives.

We will continue to honour your memory – every day of our lives.  Your legacy will live on in each and every person that is allowed to live until they die with dignity.

I love you Angel Child with every fiber in my body.

Your Silent Dreams by April D. Parker
I held you as you were sleeping…
All the while I sat weeping….
Gazing at your beautiful features…
For you were one of God’s Creatures…

I loved you from the minute you existed to be…
Living inside me, Dreaming silently…
You were always a part of my life…
Even before you saw day-light…

Looking down at you, I kissed your warm little hand…
Knowing you had passed on to the Promised Land…
You, my sweet baby, are forever my Child…
The fact you were in my life makes it worth while…

Undeniably I have hope…
The thought of seeing you again allows my spirit to lift…
I thank God to have had what time I had with you…
Love and cherish you I shall always do…

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A Mother’s Tears


I have filled an ocean with tears.
Salty and bitter, they flow from my soul.
All the grief, all the pain
All the sadness, all the fears.

All the hurt, all the whys.
All the could haves, all the loss.
All the regrets, all the lost chances.
All the wants, all the goodbyes.

I have filled an ocean with tears.
Sweet and soft, they flow from my soul.
All the joy, all the laughter
All the love, all of the years.

All the rewards, all the smiles.
All the triumphs, all the hellos.
All that was right and all that was good.
All the kisses and hugs from my child.

I have filled an ocean with tears.
Salty and bitter, sweet and soft.
For love, for sadness, for joy, for pain.
I have filled an ocean with tears.
Karen McCombs)

A mother’s love….. Day 5 of 48


A mother’s love is like God’s love;                                                                                                    He loves us not because we are loveable,                                                                                      but because it is in His nature to love,                                                                                          and because we are his children.  
Earl Riney
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You taught me love.  You taught me honesty.  You taught me to love unconditionally.  You taught me how to forgive and how to be strong.  You are the strongest person I have ever known.  You gave me strength when I was weak.  When times were sad and tough you reminded me to be grateful for the small things in life.  You taught me how to be myself.  Most of all you taught me about life and how to live.