Bravery ???

I have been thinking a lot about how we view bravery, how often the word is used and how sometimes it can be detrimental rather than encouraging. How people mean to encourage yet in truth can do the opposite. 

I can only write from experience but there are times in my life when I have felt the complete opposite to brave yet have found myself surrounded by people telling me I am.

When Livvy’s was diagnoses and I found myself facing life with a child with a complex disability so many said,  “you are so brave” “ I don’t know how you cope” all statements were being said to encourage and celebrate me. Yet I was far from brave, I so wanted to run out of my life, to pick up Livvy and live in a world where disability could not enter. A world where Rett Syndrome was banished. I wasn’t brave, I was surviving the only way I knew how, encouraged by the bravery of my beautiful girl.

“I don’t know how you have gone on” this was a statement that haunted me when Livvy died. I was caught in a whirlwind of emotions. It felt like a two pronged comment, my mind actually spiralled for such a long time due to this statement. I mean how have I gone on? Do I not love my daughter enough that I haven’t just given up on life without her, what kind of mother am I? Did I fail her by not giving up? 

Nearly ten years on and I still have no answer on to the question “how I have gone on?” Seriously it has been through God’s grace and the love I have for her sisters and also the innate knowledge that she expected nothing less of me but to live this life fully and that she would certainly kick my butt if I didn’t. I was not brave, I was surviving. 

I still wish people would think before admiring another’s bravery because those words offered in love often becomes a noose around someone’s neck, pulling tighter holding those who so need to admit to being scared, to being vulnerable no safe place to unload. 

Instead please, ask them how they are doing? 

Tell them its ok to be afraid? 

Tell them them they are doing well but don’t ask them how they have got through it, because truly if you are waiting for me to get through my grief for Olivia you may be waiting a long time. 

Be a safe place for people to unload, cast no judgement about where they are at. Just listen, really listen and if you cannot find the words to support just hug them tight. I know there is no answers to the pain, no reason’s to the why but sometimes its just nice to be held. It’s not ok and it may never will be, but I am not alone. That means more than words. 

“Allowing others the space to be vulnerable may be the bravest thing we can do.”

 

 

 

Every moment is a gift.

Dear Kate 

For a long time now I have followed your journey on Facebook the heartbreaking diagnoses of Tay-Sachs Disease for your beautiful daughter Brook has made my heart ache for you all.

You have walked this pathway with such strength I can only admire.

You desire to share every moment with Brook creating memories and making sure she knows she is loved is simply inspirational.

The photos of Brook have both blessed and broken my heart at the same time.

You are a amazing lady and I know you will not accept this but you are truly inspiring.

Your handsome son Jake has shown such courage and grace and I know you are so very proud of him. He is certainly an amazing big brother to Brook and a credit to you and the way you have raised him.

I cannot imagine what you are going through right now. I think back to the time when the hospital told us we would lose Olivia unless her seizures came under control. Even in that darkness we had hope and for a few more years we had that hope. But sometimes hope fades and for this my heart breaks.

Seeing Brook reach her third birthday was so wonderful and I actually screamed out loud when she was here for Christmas Day. My family all though I was crazy until I shared your story.

It was the sharing of this story then that made me decide to share It again here on my blog.

My husbands words of “every moment is a gift” struck straight at my heart.

You have struggled these last months but in a grace filled way that I have  respected greatly and if by sharing your story here I can help you to be able to cherish every moment you can with Brook then I’m happy to do so. I know I so wish I could do more.

 

SO…… 

Dear blog readers

I share with you the story of a beautiful little girl who has the terrible disease Tay-Sachs, who is now living on borrowed time. A little girl who is so very loved by her mommy and big brother and many many more.  Kate, is an amazing mom who wants nothing more than to spend as much time as she has with Brook.     To help Kate do this her friend has set up a giving page to raise funds to allow her take unpaid leave from work and to be by Brook’s side.

Every moment with Brook is priceless so please, please make a donation to this worthy cause. Nothing is too small honestly.

Please help me to help make every moment count for this beautiful family.

 

Dear Brook

Your are a beautiful young lady who has blessed the hearts of so many. You have shown such strength and courage. You have reminded us all of the gift of life.

I will forever hold you in my heart. xxxx

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Dear Kate 

The next days, months, years, forever are going to be hard but please know that although many miles separate us I am here for you always.

xxxxxxx

 

 

 

Ten years

Today couldn’t go past without mentioning the awful events of this day ten years ago.

September 11th 2001 a date that was torn into our minds and hearts. The devastation, destruction, the face of evil was apparent to the world that day.

Too many innocent lives were taken. Too many have lost there lives since due to the events of that horrific day.

How do you move forward?

The truth is we have no choice. I remember sitting at home on that fateful day holding my 6 month old daughter in my arms watching the devastation unfold on the television screen before me. I sat there in a daze wondering what kind of world my four girls had been born in to.

Of course i was shocked by the evil of this event, yet the truth is evil has been about for eternity the holocaust, genocide and many more atrocities committed in the name of faith, in the guise of sovereignty.

No evil is something we see all to often.

What struck me was the good in this world. The bravery of the firemen as they battled the blazes. The police officers, the ambulance staff. Each one a hero in their own right. They didn’t walk away they walked forward together.

People all over the world uniting in prayer, uniting in grief pulling together, holding each other. Refusing to be beaten by terror.

The world isn’t evil just some of the people in it.

It’s this hope I give to my child, this faith that there is good in the world.

I join the world as we remember the lost today. I pray for the grieving families and for the leaders of the world to work together so nothing like this happens again.

I stay strong in my hope and my prayers for peace.