Through the process of writing my book Leaving Life Legacies, I sat down and worked out what got me through my experiences, and there was a clear set of coping mechanisms that I ‘put in place’ with each event. So working on this I have developed 12 important strategies that I believe, if you take the time to read can be implemented within any situation.
I have also now developed a keynote about my journey with Spinal Muscular Atrophy and how these strategies, helped me be the person I am today.
If you are interested in a speaker for your event, I would be more than happy to discuss what I can bring to your event. I will leave you with my top 3 strategies:
Don’t Feel Guilty
When making the massive decisions and issues that arose dealing with SMA, it became apparent that we had to make decisions (and life altering ones at that) that affected someone’s life. When you are in a situation like this, you need to make sure that you do what is right for your family, not what anyone else wants you to do, because at the end of the day you have to live with your decision. I say this to newly diagnosed families to this day – make sure you do what is right for you so you don’t feel guilty at the end of the day. You shift yourself because you are forced. It’s never airy-fairy. It’s always going to be hard but you are forced to choose. You have to look at what is in your gut because it comes back to how you made that decision in the long run. For example, I drew the line at intubating children. It was something I just did not want to do because I would feel guilty that I was just keeping them alive. Follow your heart and be true to what your gut instinct tells you.
In this world we sometimes forget the little things that make such a difference and particularly in relation to our family. We often take our closest family members for granted and forget to tell them that we love them. Those little things include telling your closest family that you love them, or a friend how important they are to you. In my eyes, we don’t do it enough. When was the last time you told someone you love them? When was the last time you gave your child a hug? I remember when I was little, my Mum used to come into my room each night to tuck me in and give me a kiss and a hug. She told me she loved me every day. I remember this and now that the girls aren’t here I am saddened that I won’t ever get to do this for them. So today I ask that you go and tell someone you love them, for tomorrow they just might not be there for you to say it and for them to hear it. Staying connected to the people you love gives you the stability you need the most – at the time of going through the heartbreak. In those moments when you feel that you are the only one feeling these emotions, you can remember that there are others who are riding the emotional wave with you.
Live for today
Do things ‘in the present moment’ and although this was extremely important when the girls were alive, it should also be important on a daily basis. As Ross was a recovering alcoholic, he always used to tell me ‘I take it one day at a time,’ and we lived by this philosophy for many years. Each day we planned for what we had to do, and got it done. This was more important when the girls were alive. We had no choice but to take it one day at a time, as we didn’t know what may have happened in the next. With Zarlee especially I made every day count, we made sure we did something – an activity a story, a game to make her laugh, and I can honestly say she had an amazing life. If you are constantly stuck in the past, you miss out on the things you have in your life in the present. Also dredging up the past incites blame “she should have done” “he should have done” “you’re the person who carries the gene X, it’s your fault!” No! It doesn’t get you anywhere. It can make you angrier. If you live in the moment, you don’t need to be angry. Being angry detracts from the love and respect for each other as you go through such a bad experience.