"Talking to the Moon" by Bruno Mars was the song playing on my playlist, from the soundtrack for a movie. As I sat listening to it with my daughter Sunny, she began to explain the film's plot, about a little girl. Her mum was ill and so ill that she eventually passed on.
As she choked back tears and snuggled up beside me. A profound feeling came over me; the moment that I longed for, for months, finally happened. Like a flip of the switch, I could feel calmness and
warmth encapsulate me. As I hugged my baby girl, I could feel a tiny little spark of myself coming back.
That was the night I took my first dose of the new medication. Of course, it wasn't the pills. They’re not miracle drugs, but the calmness that I now felt, undoubtedly helped me deal with the side effects over the next few weeks. I was able to watch my husband and girls quite closely that weekend; it’s crazy how one uninvited guest can change the dynamics of an entire family.
I tried not to let this disease get the better of me, but too much was happening over
the past few months.
I stopped believing in myself.
I forgot my mantra,
I forgot my advice,
I forgot my reason for being a warrior.
PD is my uninvited guest, and I was in my battle within, but I lost track of the fact that it also has a relationship with my family. Whenever I grow weaker and begin losing hope, this directly affects my beautiful girls. You see, my strength to stand up and fight and my drive to stand up, dust
myself off and keep on going – are my girls. I am proud to be called their mum.
Tas is my pillar of strength; my coach says, keep going, mum, you have to, even when I feel too tired. When I look at her, I remember all the sacrifices that she makes for me.
She is a 20-year-old who will return home shortly after exams to make life easier for us. She chooses to be my caregiver over fun with her friends (this isn't the life that I wanted her to live).
Unfortunately, Covid nudged her into this, nevertheless she does this with such love and care. She is also so driven, and she tries to juggle so much that we often worry about her.
She is no longer the scared little girl that left home for university. She is now a confident young woman, who is still my big softy (but also matron when she wants to), my driver, and my person. She has developed intuition to know when an episode is coming on and how to take control and sort it all out calmly. She not only does this for me but also helps out with Sunny when I can’t.
We often chat about the fact that she also needs to go back to Johannesburg because I can see when this becomes too much for her to handle.
My Sunny is my head cheerleader and greatest fan, but most importantly, she gives me my drive to get stronger and be a warrior. She walks closest to me and holds my hand the tightest.
Her gripe with PD is that she is the only one who couldn't experience life with me without the guest. She feels robbed of that, and it upsets her when the others talk about stuff that I used to do with them.
I am amazed at how this little girl of mine has grown into a petite young lady. She spends the most time with me, so she witnesses most of the symptoms I go through. I wish I could spare her this pain and hurt; unfortunately, PD doesn't allow that. I really can't imagine life without her because she can say or do something to make me smile and most often laugh even on the worst day.
What hurts me most is that she doesn’t get to be just a ten-year-old who has school and play. She is also mums part-time carer, whether it’s at home in the kitchen, or trying her best to help me through symptoms or to hold my hand when we’re out.
She shuts down when she’s away from home. She becomes more withdrawn. Her anxiety often gets the better of her because she feels as though she has to carry the weight of the world on those small shoulders to make us proud.
Sunny, you are unique, strong, beautiful, intelligent, funny, witty and kind. Always, remember that I love you and I am so honoured to have you as my daughter. No one else could walk this journey
with me and make me want to live each day to the fullest the way you do.
I am so glad that I found my way back.
Thank you for loving me and being a massive part of my life and my journey to my family and friends. Thank you for reading, cheering me on, and being a part of my story to all of you, my loyal
readers and fellow PD warriors.
Thank you all for being so patient; I had to walk this part of my journey alone. I know that I have a long way to go, but knowing that you’re cheering me on – is a huge help.
To my fellow warriors, the lessons that I learned are:
I am only human
I need to be kind to myself
Move forward one day at a time,
Stand firm and keep my mind and body strong
Don’t stop fighting.
It is okay to have bad days, don't give up.
Focus on the positive
It is okay to fall, cry, pick myself up and continue moving forward
Spread love and kindness
And the final and most difficult, still working on this one ; Stop concentrating on the rearview mirror; if I dwell on this, I will not move forward, I am no longer that person; I have a new normal. I accept this because I want my future with my family and the uninvited guest to be
AN AWESOME AND EXTRAORDINARY ONE!
Sending you love and light