I’m so excited and can’t wait to share this news with you all.
My late daughter Livvy has been chosen as one of the 195 girls to be honoured by Team Sparkle in the So Cal Ragnar Relay. 6 amazing women are running 195 miles for 195 girls with Rett Syndrome. “195 miles”that works out about 30- 35 miles each, can i just say OUCH.
Livvy’s mile isnumber 171and is being run by a Rett mama Allison Foley.
As you can imagine I am super excited having Livvy honoured in this way it has certainly blessed my heart. But I’m also so happy to be part of this amazing fund-raising event dedicated to funding the research into curing the devastating condition Rett syndrome.
I am seriously stoked to be part of this event.
So why am I telling you guys all this?
Its simple I need your support.
I am hoping to raise $100 to support this amazing cause.
Also go check out Livvy’s Page over at Girl Power 2 cure, I am slightly bias about this charity as they have been strength to me in times of weakness and have given me comfort in times of sorrow. But more than that they give me opportunity to honour Livvy and to keep her memory alive by fighting alongside them against Rett syndrome. To quote Kelly Butler from GP2C ” once a Rett mama always a Rett mama” I can’t tell you how much I needed those words.
So thats my exciting news for the day, lets support Team Sparkle as they support our girls.
I’ve been thinking recently about who we really know in our lives.
Are we sure we are seeing the real person?
Ask yourself the question
Who do you really know?
I imagine that the number is quite small.
Often you find that the public persona is not really the truth.
How many times have we be surprised by news headlines. Learning that a person we believed to be kind, great and fantastic is in fact a cruel hard abuser.
Pop starts we have worshipped being truly sick individuals.
Who we see is not always who we really are?
The mom at the school playground full of smiles and laughter goes home crying suffering from depression.
The wife who seems so happy and in love is actually a victim of spousal abuse.
We really don’t know what happens behind closed doors.
I asked myself the question.
Who do people see when they see me?
I’m not sure.
I am a person who wears her heart on her sleeve. I am known to tell you my life’s story in the first five minutes of meeting.
But do I really share my all?
Do I confess that at times I feel like a complete failure. Motherhood is harder than I ever imagined and as much as I love it I desperately crave a break now and again.
Do I tell you the man that I married drives me insane with his RC obsession and that I’m tired of hearing lap times or speed controller turns and seriously if he forgets something once more I may go slightly insane.
Do I mention that friendship scares the pants of me. That I am convinced I will screw it up and that generally I’m not very likeable.
The truth is we all have hidden sides parts that lurk in the shadows. Yet those hidden sides effect our lives more than we realise.
Maybe it’s time we brought them
Into the light.
Building relationships that are true.
Letting people see who we really are.
I honestly believe this is the key to happiness. When you surround yourself with people who really know you it allows you to be.
So I’m saying this is me, I am mixed up lady and that is perfectly ok.
I’m tired of living behind closed doors.
Life is such a gift and I want to live it fully.
So join me open those doors swing open those windows and let’s embrace we are truly are.
Throughout our lives we find ourselves becoming parts of communities, part of set groups or to use the sociology term subcultures.
Be it a group of work colleagues , all the technicians together. Be it a parenting group, parents of two year olds please hang here. We come together through shared experiences or passions.
We are never really ever only in one group, different aspects of our lives play into different groups.
Myself I belong to many, parents of teenagers, parents of 12 year olds, foster parents and also the one group I really wish I never had to join parents who have lost a child.
All these groups I am proud to be part of but one thats on my heart right now is parents of children with special needs, especially as I like to call them my Special Kids in the UK family.
This is one amazing group, you find us in all shapes and sizes . We have varying beliefs and certainly different personalities. Our children have different conditions even with the same diagnoses or in some cases no diagnoses.
So what makes this group rather special?
We can bitch and moan as good as it gets but when one of us is hurting we stand along side them.
If you were my friend on Facebook today you would see that my news feed is full of pictures of Minnie mouse. These pictures are our way of showing one of our members that we stand beside her. Most us wish that we could literally be standing beside her tomorrow as she lays to rest her beautiful son. We wish we could swap our virtual hugs for real squeezy ones.
Thinking of you xxx
But we cannot,
Life, children and distance keeps us separated. Yet nothing will stop us thinking and sending our love and wishes in support, compassion and remembrance tomorrow.
This same group right now are also sending prayers and healing to children in hospital. Sending strength to parents who are utterly exhausted. Families that are at breaking point.
At times we cannot offer more than the words “I’m here” but believe me over the years those words have meant a great deal.
I am blessed to be a member of this group. For over the last 8 years they have been my strength. I have made friends whose friendship goes over and beyond the fact that we are special needs parents.
When I lost Livvy one of the crazy worries I had in my head was that I would lose these friends. How wrong was I, our children may have been what introduced us but they aren’t what bind us.
Maybe our binds are forged in exhaustion, endless battles with professionals and way to many late nights. Maybe they were joined in the many melt downs and medical jargon and repetitive forms.
Who knows, who cares, regardless of the why there is simply the just is.
I am so thankful to be part of this unique subculture to know and to share my life with these crazy people. At times I am not sure I would have coped without one or many of the group members.
Together we have faced the worst.
I am so grateful that one day many years ago I stumbled upon a small yahoo group. I have watched in grow over the last 8 years watched the number of members change from the tens into the thousands.
Being a member of this group means that although we may be facing uncertain futures with our children. We are never facing them alone.
With Christmas a day away I have been thinking a lot about family and in particular the joy I get from being a mother.
17 and a half years ago I began the journey of motherhood and not for one second have i regretted it. From the moment my children were planned they were loved. From the moment they were conceived they were cherished.
Being a parent isn’t easy. I have made mistakes and I have struggled but my girls were and are the greatest gifts ever.
I look at my children now and they are nearly grown and it scares me. Next year my eldest will leave for university and my heart is fearful.
How do you let them go?
From the moment I saw that second blue line I have done all that I can to protect my beautiful girls. I feel I failed when Livvy died. I couldn’t protect her from Rett Syndrome.
Now I’m scared I will not be able to protect my girls from the world.
How do you let them go?
How do you find the courage to loosen the ties and give them the freedom they need to grow.
I guess this is where it comes down to trust.
Trust that you have raised them to be wise and keep themselves safe.
Trust in them.
It’s not easy and I think now of Mary and that moment when God asked her to carry Jesus.
How brave she was.
How faithful she was.
Did she know her son was to be persecuted?
Did she know he will become our Saviour?
I cannot imagine her pain.
But I can admire her courage.
She knew that her son was in the hands of God.
I know my girls both here and in heaven are also in his hands.