PD Mum and her Musketeers Four!
Good day...fellow PD warriors, and all my amazing supporters Unfortunately, the last fortnight, has been tough for me. I haven’t been feeling too good, and I needed some time to rest, heal and pick myself up. On a positive note, we have an addition to our family. Our dearest Marley, now has a beautiful baby sister,named Kaiya. She’s 9 weeks old, so we’re back to sleepless nights. Not feeling too good, has given me time to, once again,look at those who really bring love and sunshine to my life; and be grateful for having them. Especially my children….
I do hope that this sheds some light on how PD affects an entire family. My kids have gone through so much,just like I have; and it’s a constant work in progress. So,this post is dedicated to my children (my biggest fans… love you to the moon and back) A little over 10 years ago, due to life’s circumstances, I went from being a mum of 1 child, then 2, and 3 months later a mum of 4. My dearest sister had met with a car accident, and she and her 2 children moved in with us during her rehabilitation. They lived with us for several months. The 4 cousins formed a bond that made them siblings for life. The bond that I formed with my niece and nephew will always be strong. They will always be my children also, and I their backup mum. I hope they know that I amthere for them and I love them, unconditionally. They can talk to me about anything without judgement. And just as I love each one of them, I also know just how much all 4 of them love me too. My beautiful children are Tas (20), Sash (16), Shri (14) & Sunny (10). I have seen the fear and pain in their eyes when they first discovered my uninvited guest. I continue to see the feeling of helplessness, sadness, and hurt wheneverthey see me. This is especially evident with the three older ones since they live in a different province. I see it,each time my eldest, walks through the door for the first time, when she returns home for university break. From, the time I revealed my diagnosis, I am always open to them (the kids) asking questions, and answering honestly. I try to reinforce, that I am okay, but it isn’t always possible. I think trying to stay as positive as possible, to them, gives me the fighting spirit. I want them to know that I will fight till the end, so that, they will be as proud of me, as I am of them.
I asked each of them to write down approximately 10 adjectives that best describes me and how they feel about me having YOPD. Sunny, is the light of my life and my little philosopher. My miracle baby girl, has had a tough time, because she was forced to grow up so quickly. She is so responsible, especially when I choke or I need my medication whenthat awful dystonia rears its’ ugly head, and I can’t get out of bed. My Sunny is such a strong. amazing, witty and resilient girl. She has had so much to cope with and she does this with such a positive spirit.
For those warriors with young children,(https://www.parkinsons.org.uk/information-and-support/childrens-books is an excellent, free book todownload. It helps children understand PD) we have found that play therapy and animal friends have helpedher handle every aspect this journey. It is scary for children because they don’t know what to expect. With time we also realised that giving her the name Parkinson’s Disease made it a little easier for her to cope with the anxiety of the unknown.
Sunny is also my biggest fan and supporter of my blog. She constantly reads my posts, and sends me the sweetest comments. I love you, my baby girl, you will always be my inspiration, driving force and strength (to carry on fighting). Her words: amazing, strong, kind, funny, weird, strange, anxious, sad, terrified, upset, scared.
(In our home, we encourage weird, because being weird is awesome, weird people live amazing lives and achieve great things.) I am so grateful to have you with me, baby girl. Youmake my life interesting and I do enjoy our weird dances and lip syncing. My journey is so much easier and happier knowing that you walk with me.
Shri, is my critic. After every post, she is able to give me her review... an honest one which I truly appreciate. She is very positive and very much like me. We both like stuff done well or not at all, so I trust her judgement and I think that she trusts mine. She was a few months short of 4 when she became my baby girl. She always encourages me to look forward and stay focused on fighting. She has taken what the universe handed to her(she has her own challenges), and she has spread her wings and soared. I hope, that I can help her see that she must stay positive, always stand up tall and never allow her disability to define who she is. What saddens me is that while she stays positive, I don’t really know, exactly, how she feels about, our uninvited guest. Her words: determined, confident, optimistic, brave, caring, loving, kind, thoughtful, selfless, empathetic, humble The universe has blessed me with this awesome young lady. Her strength and courage shines through, and her ability to stay focused on what she wants to achieve is amazing. Shri, continue living life the way you have. Don’t allow anyone hold you back from achieving and living an extraordinary life. Remember that I will always cheer you on, and you will always be my mini-me.
My dear Sash, is the second of the four musketeers. His energy, mischievousness, wacky sense of humour and general boisterous character keeps us on our toes.
He is was my baby since he was a few months old, but our bond was sealed just before he turned 6. He hasloved me, unconditionally since then, as I do him.
I think, that he took my diagnosis the hardest. When I heard that, it truly broke my heart. I wish that I could take away the pain and heartache that he feels. Being, a 16 year old, is difficult enough, but also having to carry this added heartache makes him one amazing kid.
Unfortunately, my anxiety and depression aresometimes so overbearing that I am not always available to be there for him. I do feel terrible for not calling him often or being a part of his life, like I used to be. I am also unable to deal with crowds, and I do feel overwhelmed, when I visit him and family. As a result, I spend less time than anticipated with him.
Well, hopefully I will be able to change this in the future, give you more attention and play a larger role in your life like I used to. You will always be my son, the one who tries to make me laugh and makes me feel needed. From now on, I will try to always be there to give you a hug when you need one, or to listen to you when you need to talk.
So, break free from whatever restrains you, and show this world just how brightly you can shine, my son, When I saw his words, I felt his pain: scared, angry, anxious, frightened, worried, sad, unhappy, terrified, livid, hate The universe blessed us with you, my darling miracle boy. You came along and soothed my aching heart, I hope that I will be able to do the same for you. Now, last but not least, one person who I absolutely love, adore and will not be able to do without. We have walked together for 20 years... It began with me carrying her, then holding her hand, then supporting and cheering her on, driving her to where she needed to be, being friends and her confidant. And now.... she drivesme around, supports me and has been my caregiver for the last year.
Helping me with everything, I cannot do. Hugging me on the bad days, and feeling my pain and crying with me when I have the dystonia episodes. I really didn’t want this for you, honey. She is my eldest, beautiful daughter, Tas. She has such a pure, magnificent soul.
Tas, you see beauty and goodness in everyone, and a glass half full, always. You inspire me to be a better person. I am so honoured, and proud to be called your mum.
You have so much to offer to this world... I want you to go out there and achieve everything you have dreamed of. I want you to be bold, travel and experience the magnificence of this world. Live the happiest life, you possibly can. Laugh, because you can, and it is the best medicine. Smile, your exquisite smile brightens up our day and it makes others want to smile also. You make this world a kinder, better place to live in... and you inspire others to want to be kind. When I look at you, I am in awe of you. Even though you have experienced, so many of life’s lesson, you don’t allow this to define you and you still aspire to constantly spread positive energy and goodness. Tas’s words: strong, fiery, independent, humorous, stubborn, devoted, fragile, fighter, survivor, fatigued,altruistic
I love my children, and it is heartsore watch them, go through the grief process. At the end, I do feel that it makes us stronger as a unit. This opens doors to communicate more with them. I encourage them to communicate, if they are able to verbalise how they feel, we can teach them tools to handle all situations. They, have to watch me go through all these symptoms that is so scary for me, and it is most definitely terrifying for them.
I want my children to remember me, as always being there for them, for playing an active role in their lives, and for the little stuff that adds value and happiness to their lives.
I do hope that, my experiences are able to help you or comfort you in some way. So today, let us:
• show your gratitude to God and loved ones, for walking our journey with us
• smile, for we know not what others are going through and our smile may bring solace to someone’s aching heart
• Finally, be kind to at least one person today, one act of kindness has the potential and power to begin a ripple effect
Let’s make today an extraordinary one!
Wishing you much love, light and happiness