Saturday 25 April 2015

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 - 

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.    

Monday 6 April 2015

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)