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.