WE STRUGGLE BUT WE DON'T QUIT - GUEST POST 5

Tanya, me and Roxanne 2014

 This is the fifth instalment in the series " We struggle but we don't quit". In this post I am handing over the reigns to a Mum called Tanya. Tanya does not have Cowden's syndrome but her daughter does. She inherited the condition from her father.

I first met Tanya in an online Cowden's support group soon after I was diagnosed. It somehow helped to find a fellow Aussie in that international group and I was very touched by her words of wisdom and caring manner. Later Tanya, another friend Roxanne and I would start Cowden Syndrome - Australia, the first support group for those with CS in Australia.

Welcome to Tanya's story which begins with HOPE.

-----------------------------------------------------------------------------------------

I’m going to write a bit about my experience caring for a child with a rare condition whilst battling my own physical and emotional health challenges.14 years ago I was blessed with a beautiful little girl whom I named Hope because she was my little miracle and my vision for a new and better life. Yes, my life up until this point had been extremely difficult and full of much sadness and pain so when I had my daughter I called her Hope. I never had any idea what the future held for her nor did I know how much her name would end up meaning.

The next 14 years for us were extremely difficult filled with much physical and emotional health challenges as well as many close family traumas. During these years I battled for answers to Hope's various health and physiological anomalies. Then when Hope was 8 years old after a great deal of searching she was diagnosed with PTEN HAMARTOMA TUMOUR syndrome or COWDEN'S SYNDROME (depending on which specialist you talk to).

I won't go into this condition as I’m sure you have read quite a bit about CS on this blog. What I will tell you is how it feels when you receive a diagnosis like this and how you can climb your way back to your new level of normality.

How would I explain rare disease?

Imagine you are taken and suddenly thrown into a foreign country alone. You don't know this country and you don’t speak the language. Everything you have known is gone and your life is altered dramatically .You feel lost, confused, scared,misunderstood, sad, alone and angry that this has happened. You try to talk to people and explain what has happened but no one understands you and you can’t find anyone like you. Even the people in charge 
who should be able to speak your language are unable to help you and really don’t 
understand.

From my perspective this was exactly how I felt when Hope was diagnosed and for many years after. Today I still have days where I feel alone and misunderstood, especially where doctors are concerned, but not to the degree I did in the beginning.

How did we find our way back and how do we cope???

Firstly, I searched for SUPPORT and eventually after much looking met some amazing people who understood what we were going through, helped us stay strong and understood our new life. I worked really hard to STRENGTHEN my health and Hope's. I overhauled our life by changing our diet and exercise. I also searched for ways to deal with the anxiety and depression we both deal with. Some were helpful, some not and yes these things made us very poor but it was all worth it.

We learned to use HUMOUR to deal with some challenging aspects of our lives. One particular way Hope would cope with all of her doctors and specialists was to give them 
nicknames. We have had the Dark Lord (yes Voldemort from Harry Potter) . That nickname 
was definitely well earned! We also have Mr Boring History Lesson guy and many more. Hope even jokes that she will call her first autobiography "101 ways to moon Dr Salmon" (the owner of the Dark Lord nickname). My motto is never to underestimate the power of HUMOUR but just remember at some really sad times, the humour won't be helpful. So know when to use it and when not too.

 EXERCISE is a big one for us both and we have learned that a strong body means a stronger mind and for us it helps many symptoms of anxiety and depression. Hope has come so far in this regard. For a child who walked late and always fell over and had all kinds of coordination and joint and health issues, she is doing much better in this regard due to hard work and persistence. We go to a gym together now and I must say kick some fierce butt in body combat class. We love the empowerment it gives us even on our bad days. In past years we did some fundraisers and runs like the mother’s day classic. These

Mother's Day Classic

weren’t easy physically but we did it and NEVER GAVE UP!! Hope also last year found a huge love for dance and she now does tap, hip-hop and jazz. Does this hurt her body at times? Absolutely it does but the benefits far out weigh the negatives and it makes her feel happy and alive. She has found her passion and the effect of that is very powerful!

Hope's favourite dance quote

One more thing I’ve learned is that it's very important to learn to accept the bad days. Things in our life are certainly not easy and some days it's ok to feel sad or angry or just over it all. The important thing is to be able to get up the next day and keep going and try to move forward. If you have noticed I often refer to things we do as "us" not "I"or Hope. It’s because we are a TEAM. It may be small just being the two of us but we are very powerful if we work together. Our relationship is very important. Yes, we struggle terribly at times, we argue, bicker, yell, get angry and cry. But we are incredibly close, we have a very special relationship forged out of much heartache, persistence and hard work.

How do I see this new world now?

This new world I live in has become my new reality. I have learned to navigate my way around. I am increasing in confidence and I have become a great advocate for my daughter. Whilst I may not accept the suffering my daughter goes through at times, I am learning to cope with it and learning how to help Hope to cope also. The world of special needs and complicated medical needs is extremely tough at times but I’m learning the lingo. I’m understanding the language better and I’m learning where to go for help.

And most of all compared to my first years in this new world, I’m seeing flowers instead of weeds and sun instead of rain. Of course this is not a world I would have chosen. The pain of what we have been through and go through daily is still raw and difficult and seeing your child suffer is something no parent would choose, but I try to see the positive and if I look hard there is much positive to be found, even if some days the positive is the ability to enjoy 
a nice strong cup of coffee

Being forced to become a single parent carer for a child with a rare condition and many other battles has completely changed my life. It forced me to face head the serious depression and anxiety that I’ve battled my whole life, as well as all my past demons. I had to fight hard to get myself well so I could fight even harder to get my child well and help her grow and cope with the problems she faces. I’m damn proud of how far I’ve come and it’s not often that I give myself credit. I’m certainly not perfect, I still struggle and still have bad and really sad days or days I want to hide away. But I don’t. I get up every day and keep fighting.

                                             
People say, you’ve done so well with Hope or Hope is lucky to have you. Well I can honestly say that I am extremely lucky to have Hope. She has taught me so much. I am incredibly proud and humbled that this kind, brave, funny, smart and truly beautiful soul is my daughter. This is the beauty of special needs parenting of any kind. We work as parents and carers to help our kids in every way possible, but in the process they help us. And in my case she saved my life and showed me the true beauty of life, what’s really important and I learned the healing power of unconditional love!!!!

______________________________________________________________

Not much more I can add except,
Till next time...xxx
ST