Better Than French Fries

I will never forget when I met Janie. I had just flown in to New Olreans and joined some friends for dinner. It was a group of 10 and I knew about half of the people. I was enjoying the best french fries of my life when I heard Janie talking to somebody else and noticed her accent, then somebody mentioned that she had twins and immediately I was star struck. I had been following her blog, watching the video’s of sweet Olive eating the apple and thinking what an amazing duo this mother and daughter were and now I’m sitting next to her. We took a long walk after dinner and the rest is history. I am so thankful for Janie and what she has brought to Rettland.

IMG_7609I love November, Autumn is my favourite season of all, something about Autumn is so therapeutic. All the de-cluttering, packing away of summer clothes, seeing the leaves drop, getting ready for Christmas, thinking about goals & new starts for the year ahead. Maybe its because I am an organizational freak & I love new beginnings & making plans for the year ahead…..…..

My daughter was diagnosed with Rett syndrome 2 years ago.  It’s been a tough & painful two years. The grief has been huge & still lives somewhere inside me everyday. However my attitude has always been, what can we do ?, how can we best support Olive?…… maybe I am optimistic at times, but I really do love life & feel extremely blessed to have my beautiful family to share life with.

We are lucky actually that we have hope, hope for treatment that Olive & all the girls & women around the world may have access to treatment or even a cure one day in the near future. However as much as we are so grateful that we have that hope, & we want to hold onto that, I still want to make the most of every day, we still want to build memories as a family that we can cherish & look back on. We still want to ensure that Olive lives life to its fullest & enjoys every day as much as she can.  I have never felt the reality of how much life is a blessing until my beautiful daughter had the simplest of things taken away from her, like the ability to speak, walk, feed herself, play with her friends & share her secrets with her sister. This is the reality of  living with Rett Syndrome.

As much as that pains me every day, I know how lucky we are to have so much love in our life every day. Having twin girls was a dream of mine that I really never thought would come true & it did.  For that I will always feel extremely blessed.

So I look back over the last year, there is something special that I look back on that has a very special place in our hearts.  I am so grateful that we get to create such special memories & meet such wonderful people, all because of Rett Syndrome. I am certainly not grateful that Rett Syndrome entered our life, but I am grateful for some of the gifts it has bought to me & our family. Friendship being one of those very special gifts.

We were extremely lucky earlier this year, we visited Santa Barbara, a stunning coastal town in southern California. We visited with our friends the Kolendrianos family, who organized an event ‘paddle for Sorel’ in honor of their beautiful daughter who also suffers from Rett Syndrome.  In out time there we felt a little more at ease, a lot of  love & understanding.

It was truly beautiful to see the amount of support that was gathered on that day. Approximately 60 people paddled 9 miles along the coast line to raise awareness & funds for Rett Syndrome Research.

Many families with daughters with Rett Syndrome were there to support each other, the siblings pretty much took care of them selves, playing on the beach making new friends.  When you are with other families, there is something transparent, you really do not need to explain anything, as there seems to be a mutual understanding that everyone just knows & understands each other.  Everyone is in the same boat & understands the difficulties of bringing our girls to the beach in the heat of the sun, with other siblings that want to play & have fun.
However that day we all did it, together somehow it was ok, here are some moments I managed to capture while Paul was paddling 9 miles down the coast, Tilda was playing with new friends & Colleen kindly let Olive sleep on her lap, & of course a few more shots captured of our beautiful stay in Santa Barbara.

Something magical happened when we met these families a couple of years ago in New Orleans, we were no longer alone. They may be on the other side of the pond, but they are always in our hearts.

3 thoughts on “Better Than French Fries

  1. maren says:

    Oh I miss my California friends so much! Hope to meet Janie sometime soon. Can I still be part of your sunny group even if I live in the snow now?

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