When does the story change?

This story of mine, of ours started 13 and a half years ago. It has been as much my story as anyones.
I had my life changed, my views challenged, my heart broken and yet filled with love by a tiny little baby girl with CMN.
I had never heard of CMN. I had a lot to learn. I didn't know what to expect for her, for myself, for our family.
It was hard and it changed me. It became my story. I wasn't the one with CMN and yet, in a way I was. It filled every crevice of my life. I absorbed it's existence like a sponge.
It became a part of our family story, it had an effect on every single one of those who loved this tiny little baby girl.
That tiny girl was and is a fighter. She is an inspiration. Only those closest know the battles she fights and how hard she works to be an ordinary teen. She is, of course an ordinary teen, very much so and yet these things don't always come so easily. Her life includes things her friends could never understand nor should they have to, no teen should have to. It does make her different and yet she is the same.
Herein lies my quandary. This has been so much my story, my life, our families life and yet, now, this tiny baby girl is a teen. So when does this cease to be my story, our story?
Is there a time that this becomes HER story and hers alone? Is there a time when I no longer am immersed in this part of the story?
I am becoming more aware when I post about her or talk about her that this is not my right to do so anymore. I am careful what I share. I always ask her for permission. This has become far more her story than mine.
It feels as though my big part in the story is diminishing and that she is taking over that part. I like it. I like that she is confident to own her story, that she is comfortable with who she is.
I like that she knows what she needs to do to take care of herself and that she is, very slowly, learning to speak up for herself ( although that is still a work in progress).  
I love that she is willing to work hard to achieve the things that matter to her. I am quite honestly in awe of her.
It doesn't take away what has been but I feel it is shaping what is to come. That it is soon time for me to back away from owning any more of the story and to hand the future to her.
It is tricky to know when, how quickly and how much to back away.
This shift in the sands is gradual and confusing but it is happening.
The story is changing.    

Choosing love -

I knew it was time to post a new Blog but was not sure what to write about. This is not because there is nothing to share but because I was struggling to decide just which thing I wanted to share next.
Then I saw this Blog post and shared it to the Nevus Support Facebook page -

http://www.scribblesandcrumbs.com/2015/04/20/choosing-to-love-a-child-you-could-lose-love-in-spite-of-diagnosis/ 

It was called ' Choosing to love a child you could lose in spite of diagnosis'. It really struck home for me. I am sure it struck home for a few of you as well.

Thankfully, unlike the mother in the article, my baby was not taken away to another hospital entirely. I can only begin to imagine how hard that would be.
My baby was whisked away from me initially but within a few hours I had her well and truly by my side.
I was not allowed to bath her because they didn't know how her skin would react but I had her with me. The nurses kept coming in and taking swabs of her head where it was falling apart.

I didn't feel that I had the choice to either love or not love this tiny, precious girl, covered in we didn't know what. There was no choice. I had loved her before she was born and what I felt was an overwhelming protectiveness. I was prepared to do anything for her. Mumma bear kicked in quickly and aggressively.

It was a long time ago. Before the internet was really becoming big and certainly before Facebook.
We had no idea in the early days of what her condition or prognosis was.
I think I believed that if I just loved her enough then everything would be ok. Now I realise that is called bargaining and boy did I bargain!

All I knew was that my baby was covered in black marks, that her head bled, cracked and wept continuously, that she was a source of concern and curiosity for the hospital staff. Mostly I knew that I did not want the mums of the other babies anywhere near her. I was terrified, overwhelmed and over protective all at the same time.

Over the next couple of days it became clear that this could well be a very big deal. That it wasn't going to go away and that we had some big challenges to face together as a family.

Thank goodness we lived where we had reasonably quick access to a great dermatologist, who is her dermatologist to this day and who she shares a special bond with.

When she was a few days old we were sent to a consultation with a Plastic Surgeon who had come home from a holiday in New Zealand to see her. We saw him on the Friday afternoon. We were told to go home and enjoy the weekend as a family and to bring her to the major paediatric hospital in our city by 7am Monday Morning.

It was Christmas time. We took our girl home. I recall feeling an overwhelming desire to ensure she experienced, that we made memories and that she would be able to palpably feel the love. That she would know she was so loved it hurt.

We took her to the Magic Cave to have her photo taken with Father Christmas and her brothers. He said he thought she was the youngest child he had ever had his photo taken with. I don't know why but getting that photo meant a lot to me. She had experienced the magic of Christmas somehow in my mind.

During that weekend I took her outside to watch the sunrise and the sunset. It rained, so we went and stood in it. I let her feel wet leaves. I don't think she was put down the whole time. She was loved so much that weekend. We didn't know what would happen after Monday and I wanted her to experience life and love, even if it was only for a short while.

It is terrifying and confronting loving a child that you think you could lose. I did not experience the calm that some people talk about. It was more a desperation to make sure that what life she had would be filled with love and life.

The path we walked over the next 18 months was a frightening and difficult one. We could not take one day for granted.

Now that tiny, sick baby is a 13 year old girl. She is incredible. My baby is brave, kind and beautiful. She dances, plays sport, does well in school, has beautiful friends and is becoming a wonderful support and mentor for younger ones with CMN.

It has been a heck of ride and I am forever grateful we are on it together.

Loving her, even with an uncertain diagnosis, was never a question.    

This is when you know you are making headway ......

Sometimes, when you sit alone at the computer writing emails, reading grant applications, keeping up with Facebook, researching, connecting, planning, lobbying, trying to keep on top of all the regulations, fundraising etc ........ you can feel as though all that you do goes very much unnoticed. In fact there have been times when I have wondered if the time and effort makes any difference at all. Perhaps if I walked away not even a dent will have been made. It is not just my effort. My family spend countless hours as well helping out in their areas of expertise.

Then there comes the moment when you are contacted by a new member, perhaps a parent of a new baby, who is going through that horrible scary steep learning curve that we all know so well. Those moments when you fear for your child's future, when you don't know which way to turn, when you are learning about this condition that you have never heard of before. Perhaps it is a parent of an older child or even adult, who has not had the opportunity to connect with others who understand their journey with CMN or who have for one reason or another a need to talk and connect now. Perhaps it is a Youth or Adult with CMN themselves who want to find out more or connect with others.

It is those moments that make it all suddenly worthwhile. It is those moments that remind me of why I do this.

Of course I love being able to share good news on the research front and useful resources with everybody as well but it is this personal contact and knowing that we have provided a safe place to land for these people that keeps me going.

Last week I had one of those great moments. It was one of those moments that REALLY made me feel as though the long slog was worth it.

I was chatting with one of our new Mums about her precious baby and what she should be worrying about, what she should be doing etc - I think I have had similar conversations with most of you so you know the one!

This Mum sent me a copy of the management plan given to her by her Consultant Paediatrician.
Under the heading of Management was written -
Clinical Photographs
Education for Parents - 
Advised to link with the Australian Nevus Support Group .....

Granted our name was not quite right but WOW!!!!!!!!!
I am so excited and pumped by this. We are getting there. We have the respect and support of the Medical community. That is a BIG DEAL! This respect has been hard won. They are a sceptical bunch our Doctors in Australia. You have to prove your worth before they will even consider embracing what you have to offer.
This has been a slow work over a decade.

One of my biggest concerns is that there are families floating around out there who need the support of others but who don't know we are here.  It sure makes the holes in the net smaller when Doctors are directing their patients in our direction.

So thank you to all of the wonderful Doctors who embrace and support us in our endeavours for their patients. Who have the wisdom to know that a patient needs more than just medical care.

- and to the Mum who sent me this management plan- thank you - you made my day :)
( it was a great plan as well, which also shows things are looking up for CMN patients in Australia)  

Another Naevus Global Board Meeting just finished.
I am currently doing a term as President of Naevus Global.
I am always left in wonder at just how small our world really is. It was still well in the dark side of Thursday Morning for me and so far into Wednesday night that it was almost Thursday for others and still afternoon Wednesday for others. We are scattered all over the globe and yet we are able to meet, face to face, and talk in real time. We all face the same challenges and have the same hopes for our own families and the CMN communities we look after.
I recall how very alone I felt in the early days after Danielle was born and yet now we have this amazing worldwide network of people who not only understand us but who, like us want to make a difference for those who follow.
These people have become a special kind of family.
What a wonderful way to start the day! ( now can I go back to bed?).
 

On Friday night I again found myself explaining to people, who find it hard to understand why we find it so difficult to fundraise for our support services and research, why this is the case.
It is a hard concept to grasp, especially when there are some charities who seem to have more money than they need, when we cannot access government support or funding, when some have paid employees doing what we do as volunteers, when what we are doing has such a high impact not just for our families but for the broader community.

So the first question is what do you do.
We support new parents to find the correct information and to connect them to others if possible nearby, so they don't feel alone and have the opportunity to create a support network.
We support youth with CMN so that we can improve particularly the social and mental health outcomes for them, with the aim of creating strong, happy confident adults, who see the world as a challenge and not their challenge as the world. 
We support parents and children on various parts of their journey with CMN and the many questions and challenges that arise with it along the way.
We support adults with CMN to connect with others and to provide mentorship should they wish.
We connect and bring together families affected by CMN.
We have a school/childcare pack ( currently under review and hopefully to become available in a booklet form soon).
We work to educate the broader medical community by attending meetings, conferences etc.
We do what we can to raise public awareness of the condition and to educate the broader community.
We have a website.
We have several need specific facebook groups.
We have our public facebook page.
We attend markets etc with our mobile display.
We hold our Youth Camp.
We hold our Conferences.
We hold regional get togethers.
We lobby for regulatory changes on issues that affect our community.
We support and encourage research into CMN and related issues, with the most recent being a study on mental health outcomes of mothers who have a child born with visible difference.

I wont start on the list of what we COULD do if we had the funding!

We do all of this on a shoestring budget at best.

So how is our work broader than just CMN - well ......
We focus on CMN of course but we also educate, support and encourage research into related things such as Bullying, Melanoma, Hydrocephalus, coping with a visible difference, Maternal and Paternal mental health, Wellbeing of children and Youth, Self esteem ...... it is a pretty broad list!

So if we are achieving all of this on very little and proving such valuable outcomes, then why is it so hard to get cash flow support -
Because we ARE NOT POPULAR. It is not that no one cares about us, they just can't see themselves as ever being affected by this. We are RARE.

You talk breast cancer - half the population are scared they will get this, the other half are scared someone they love will get this. In fact the same goes with most cancer support and research. People can relate to it and can imaging it affecting them or a loved one.
Talk drunken violence - same thing. It is popular, people can imagine being affected by it, so they support it.
Autism - well everybody knows someone who is dealing with it on a daily basis, so they can relate.

Now lets talk CMN and the room goes silent. If someone is not affected by it then they cannot see the possibility that they will be. Then is the question of how do you explain this very complex condition and possible complications in a quick chat over a glass of wine? It is too complicated. It needs more time.

So all of our cash flow support comes from those affected by CMN directly in some way. They may be a friend of the family but they still connect back to us in some way.
How wonderful it would be to be the recipient of some grants to help us. Unfortunately because of our numbers and rarity ( or lack of popularity) we are rejected more often than not. This is often because of our geographical diversity. Most grants are for local communities and we are not local to anywhere.

Do we have ideas and projects that we could run with at short notice if we had the funding - YES!!!
Oh how we dream of that day.

So when I meet someone and am introduced as the director of Nevus Support, and I am asked what Nevus is, usually the best I can do is a quick ' it's a birthmark condition' and then get their card so I can send them the website link.

No one wants to hear our long story over a glass of wine.

So we continue to rely on grass roots fundraising and direct support from our community and we sincerely thank those of you who are supporting us to achieve our goals. Without you we would be no more than a Facebook group.

If you have any connections that could help us with this please let us know.       
  

So this 'Blogging' is something new for me

So this 'Blogging' is something new for me.

I am not sure of the rules of blogging or just what I am supposed to write but I guess I will figure it out along the way.
I am not sure how regularly I will get to contribute but I will aim for once every couple of weeks if I can, so I can keep all who are interested, up to date with what is going on here at Nevus Support.

I wonder how many of you noticed our new website?

We did get a couple of emails and messages from people who did notice, thank you.

There is still some work and fine tuning to be done on it but at least the framework is up. If you pick up any editing errors please send us an email so we can fix it. Tired eyes don't always pick up everything!

I want to thank Alan, who has spent countless hours (and many late nights) around his work, family and community commitments to put it all together for us.

I would like to share with you all what is happening in New Zealand and Southern Asia in regards to patient advocacy groups for CMN but that will be another post I think. Suffice to say some very exciting things are happening for these regions and Nevus Support will be there to help them in any way we can.

 
 

Rare Disease Day 2015