At first, I thought the best way to write this post would be to share my perspective as a caregiver. One who is the core of the support system for a childhood cancer survivor, but then it hit me to save that for another time. Instead, I need to focus on the elements that matter the most according to my conversations with Joey. It keeps resonating with me how I always return to my precious boy. My muse in life and this journey I continue on. So, short, sweet and to the point is what this latest installment will be. Here are ingredients for a mixture to a solid, substantial, and tangible support system.
• Start each day listening to what your child has to say – let them be the barometer. No one truly knows how they feel but them.
• Make everyday a fun day – filled with laughter. Even if it is just one thing or moment, make the most of it.
• Get out and about whenever they are up to it. Return to their favorite places until they say stop.
• Travel.
• Take loads of pictures.
• Include others, friends, family, classmates, neighbors, strangers, doctors, nurses, counselors – you see where this is going. The very nature of an effective support system requires ‘the village’ to engage in life. Let it emanate from the core out in an explosive rainbow that hovers over everything.
• Encourage hobbies and activities they have an inkling of interest in. Whether it is just for a day or more, at least they would have a chance to know if it is for them or not.
• Let them make decisions on as much in their daily routine as possible – what they want to eat, when they want to nap or go to sleep, what they want to wear. Cultivate the ‘be in the moment’ so they know life is important and they have some control of it.
• Let there always be peace and calm.
• Let them try new things – Of course, it has to be safe and they need to know their limits.
• Indulge them – even when others say you are spoiling them. Remember, you don’t know how long they will be with you. This is the living life to the fullest. From the outside it may appear to be spoiling, but it is not.
• Be honest with your emotions. However, be careful in the weak moments, because you are their strength. Although, they don’t realize how much of a strength they are to you. It is the ultimate symbiotic relationship outside the womb.
• Respect their wishes.
• Celebrate them – everything they do.
• Encourage them.
• Trust them.
• Advocate for them.
• Love them unconditionally. Really, LOVE THEM UNCONDITIONALLY.
I miss you Joey…