MOM TO A MEDICAL MYSTERY

LOVE

In the past two posts I have focused on the nitty gritty details , yes we are still on this journey of medical discovery, yes we still don’t know how, when or even if it will end, and yes we are still madly in love with our child.

It is funny having talked about finding balance and acceptance on our journey of parenthood in the last two posts. I find myself constantly balancing contradicting thoughts and feelings like I am constantly walking a tight-rope. Most of the time I forget that we are on an atypical journey because for us it is normal, it has become our norm, it has always and as far as we can see will always be the norm for us.

Every now and then though, I remember that our story is a little different, our outcomes harder to see and achieve, yet I must admit despite it all I am happy, and in a way grateful for our journey as it is ours, and fits with us. No mother would ever wish a more difficult journey for their child, I do believe that my daughter has everything she needs inside her to achieve her full potential and in the same sense her father and I both already have the skills necessary to provide her with the same level of safe haven to learn and discover life in that all children deserve. Hers may look a little different but no one child or human experiences life in the same way as another so why do we look at difference as a threat or something to be scared of?

I have always been encouraged to live a life of accepting differences, I grew up within many different education systems, home environments, and oh so many different career shifts as a young adult. I believe those are elements of what Scarlett needs and where I can draw the many versatile skills it requires to be her mother.

I do have to however make a point of making sure that people get exposed to her atypical needs in the correct way. For example, through love most of her family and our extended social group are extremely easy and comfortable around her, handling her and holding space for her special requirements, as it has been this way from the beginning.

I have recently had experiences where fewer people knew what those special requirements were and have realised that for a lot of people the atypical experience is in a way a bit scary. As with anything in life the unknown can cause fear and then hesitation, maybe even distance between people. Love is a special thing that has encouraged and made an otherwise fearful experience a safe one for so many of our friends and family. I encourage people in extended social groups to be around and interact with scarlett. Sharing our experience will make it a fast integration for organisations and schools who are co typical and atypical facilities into the new economy.

Love has also been the driving force for so many of Scarletts early interventions and equipment that we have for her. Without love nobody would go through the suffering one has to endure through empathy when treating atypical children, or donating costly items such as standing frames for example. In my experience all of those people started their process from love. I am grateful that we as a species can feel love and let it be our driving force, without it children with atypical needs and tendencies would not survive as well.

Through our journey, love has most certainly been the driving force of stability as well as motivation. Scarletts father and I are supporting each other through this different parental experience because we love each other, we do not waiver or run because of our love for Scarlett.

This brings me to the point, is it not love that drives and supports even causes all our decisions and actions in life?

Some would even argue that just loving someone is enough. Now I think that as people, partners, husbands, wives, children, friends and families we are all under the illusion that we should be looking for love all the time. Yet everything we are and do is for love already.

I hope that this small insert into my life can assist you in realising what I have recently. I already have it, everything I ever wanted and more, in my husband, child, family, animals, garden.

The important thing to mention is to stop, take a moment and look at what you do have, focus on what is already right and the problems get so much smaller, instantly.

I love that I love myself, that I am a good partner, a good sister, daughter, lover, and most importantly a dam good mother. I love that I love what I do and that what I do allows me to be with my child most of the time. I love my garden and that I have green fingers and I love to dance, and dancing feeds my soul.

Scarlett shares many of these loves and so I love that too.

There are so many kinds of love in the world, a single person living alone can have so much love in their lives.

Just stop, and observe. Take a look around your life. There is surely love to be found.

With love, and till next time

Indigo