Be strong, show your vulnerability!

Some of my blog posts are more personal than the others, where I just share my journey. This blog post will be very personal. I find it quite hard to show my vulnerability, insecurity, my personal struggles. I feel like I am being naked in front of a judging crowd. I know this feeling exists only in my head. I created this story in my childhood where showing your vulnerability was a sign of weakness. But actually the opposite is the truth. Not to be afraid of showing your vulnerability is a trait of a truly strong, courageous person. This is what makes people relate to you.   

I’ve already shared about my daughter’s health condition that turned my life upside down. 2018 was the biggest wake-up call for me. First – redundancy, although expected, second – my daughter’s devastating diagnosis, a rare genetic disorder. I don’t remember how I pushed through that year. It seems like it wasn’t me. How did I cope? How did I survive that shock? All is blurry now.

I guess, our brain has some kind of protective mechanism that erases the darkest moments from the memory and makes them seem like you’ve observed them from the side or like a movie, but not actually living those moments.

When it all started…

 I knew I had to be strong for my child, I had to stay sane. But imagine, how hard for me as a mother was it to accept that your little baby was happy and healthy just yesterday and now has this untreatable health condition that will only go worse. When my girl was 14 months she started losing her skills. Whatever she could do by that age slowly started to regress; purposeful use of hands, first words, physical abilities. She was diagnosed with epilepsy first. In a few months’ time, a genetic blood test confirmed suspected diagnosis.

I wanted to help Olivia progressing with her development so much. Right from the beginning, we started to attend all sorts of rehabilitation centres, early development groups, private physios, occupational therapists, osteopaths, homeopaths and many other …paths, energy healers, even shaman. I was eager to try every possible way to stop the development regression, keep what was left and hopefully move towards progress. I was devoted to that process, but constantly had the mental state of not doing enough.

I was obsessed with giving Olivia every possible opportunity to help her develop. Unfortunately, I didn’t see any results. My daughter is three now and she is still not walking or crawling, non-verbal and lost the ability to use her hands.

I am telling this not for you to feel sorry for me or my daughter. I wanted to share the other side of the story. You see, when Olivia was diagnosed I thought that my life was over. The doctor told me right away that she would be dependent on someone’s care for the rest of her life 24/7. That was hard to take on.

All sorts of thoughts run through my mind, particularly about the future. How restricted our family life will be and my own life. I felt sorry for myself, thinking that probably from now on my main purpose in life was to be a carer. So many egocentric thoughts filled my mind and didn’t allow me to see the true meaning of Olivia’s gift to us.

I was practising gratitude meditations before Olivia was born, but only thanks to her I really appreciated deep in my heart the miracle that our body is. Ability to walk, talk, hold a spoon, point with a finger… Such small things that come naturally for most of us that we don’t even think about it. However, there are people whose only communication tool is eyes and they are happy with what they’ve got.

my Olivia

If you could only see her eyes!!! Eyes that are able to say so much with no words needed. There is so much unconditional love, inner peace, and wisdom in those pretty green eyes… Like she would say “ You, parents, don’t know much about life. I am going to teach you!”

Every time I am not in the mood and my emotional state goes down the spiral, just a small interaction with Olivia puts me back on Earth, in this present moment, here and now. She truly has been my biggest teacher so far. She made me take and appreciate every day as it comes; cherish every single smile, giggle; stop, take a deep breath in and notice how nature has created everything so perfectly. We take for granted mostly everything that we have and what surrounds us.

Searching for a meaning

Since she was diagnosed I have been desperately trying to find meaning in why has that happened in my life.  Why did she choose me to be her mother, because I believe that children choose their parents to be? The Universe designs so brilliantly every single human’s life path, so there must be no mistake, no coincidence. What is Olivia trying to teach me?  Perhaps, to be more compassionate, to live a life of service to others and to be sure that I am enough…

a special bond

Olivia started nursery this year. Of course, it is a special nursery in a special school. Every time I walk through the wide school corridor I see all this special equipment; standing frames, walkers, beds, tricycles, I see lots of pictures on the walls of students during the events and activities, I can hardly hold my tears. Seeing those kids is a heartbreaking experience, even knowing that they are definitely in good hands, they are looked after by caring and professional staff.

Inner battle

In this kind of moment, I can observe the inner battle where one side of me is telling “this is your world now” and the other is resisting, denying and struggling to accept. I am scared to be judged or rejected by “the normal, healthy world”. It is unbearable to think that people feel sorry for me. Pity is so humiliating.

I know, it is going to be a long journey to let special-needs’ world inside me and make peace with this fact. Making peace with a child’s disability doesn’t mean to give up on her. For me, it means to do what I have to do for her, but with inner peace, without expectation of results or rewards.

Every time I cuddle my little girl all the worries, doubts and fears just dissolve. She gives me strength moving forward, overcoming my own mental barriers and (I know how cheesy it sounds) seeing the future in brighter colours. We know too little about the future to be negative about it. 

Telling my story openly is a big breakthrough for me and a good sign that I am on the way of healing. I hope this post could be of any help to someone who is experiencing life-changing events. Remember the law of life – after the darkness, there is always light.

 There is still a lot of pain, uncertainty and other mixed feelings I have to deal with. But what I can certainly say, it is not the end of my life, it is just the beginning.

P.S. I would like to express my deepest gratitude to people who stayed with me during these tough times and who came into my life since diagnosis. THANK YOU!

with much love

Julia

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