Thru Grief, Hope, Dreams, Love and the blessings of God.. I am moving ahead after Twin to Twin Transfusion Syndrome changed me forever.
Thursday, November 28, 2019
Where Does Your Joy Come From
A few days ago some online friends and I were chatting as we tried to work through a problem in a group we're in. The topic of joy came up and it lead to a conversation online and then with my husband about how joy is connected to the trials of life and how our mindset can determine if we become selfless or selfish in the aftermath of a crisis.
We've all been there at some point or another...down a path of life that isn't what we expected, definitely isn't what we wanted and where retreating, rerouting or jumping off seems to be a far preferred path to take than the one in front of us. But we trudge through it and make our way to the other side. We sigh a deep sigh of relief to be through it and then we look around us and things look different. We look in the mirror and sometimes we don't recognize the person staring back at us. Many people feel unsure of how to go forward and emotionally they are struggling, emotionally there's a whole new path to take and it's not one they navigate well.
For those who came out of the crisis in what people would identify as having won, having beat the odds against them, the default emotion is most often erring on the side of positivity. They feel successful, proud, victorious, hopeful and filled with joy. Sometimes those emotions are wrapped in an awareness of gratitude and of graciousness, with a humble respect for those who took the same journey but didn't have the same positive outcome.
And sometimes that graciousness and humble attitude is missing.
And that's where my friends and I met in our chat group...at the point of realizing that sometimes people are so filled with joy at their own success that they develop a mentality that pushes the attitude, in the words of one of my friends (who does have a ‘success’ story), "Because I did it, you can too!" or "Everyone needs to be happy for me and my outcome because I am." It's a form of unaware selfishness. They do not look outside themselves, outside their bubble of success. They associate most with those who had a similar journey and similar outcome and are often highly offended by those who challenge the words they chose to use or the motives behind their presence or participation.
They can’t see that their attitude is so hurtful to those who long for this to be their story. They can’t see that posting photos of their surviving twins in a group where every outcome imaginable exists triggers a sadness in those who wish that their story had ended differently. And when this is pointed out to them, when they are asked to edit their post, always with an explanation of our desire to keep our group welcoming and comfortable for everyone, they will remove their post or even use words like ‘you are stealing my joy’, ‘you’ve made me feel guilty and uncomfortable’. To a loss mom who feels uncomfortable so much of the time this is pretty offensive.
It’s made me think of the reasons I have continued to be part of groups where so many triggers can be present. Triggers like photos but also success stories...stories of doctors who monitored their patients every 2 weeks and caught TTTS in time, stories of more serious situations at the time of diagnosis that still resulted in 2 survivors and sometimes even just stories from the mono di twin group that I help run that involve 2 babies being born healthy at full term. Why am I there? How much of my ‘joy’ is stolen from me by seeing these things?
And the answer is….NONE! None of my joy is stolen from me by these experiences because I have chosen to take my journey and use it to help others which in turn fills me with joy. Something I've always wanted to be with my presence in all the twin groups I am connected to is a 'proof that you can find hope in all situations', that you can find joy no matter what your outcome is. I’ve always wanted those newly diagnosed to see that no matter what happens, you will make it through this and you will find people who can relate to you and your journey, that you aren’t alone. I’ve always wanted those who don’t have the outcome they longed for to know that there are people out there who understand the heartbreak and have made it throught the darkest of times. Doing this, providing hope for others, gives me joy. Sharing Cole and Cam’s story with others gives me joy. Fundraising in Cole’s memory gives me great joy. Spreading awareness and helping others to understand the risks, empowering them through this awareness to seek the best care they can for their unborn babies gives me joy. Knowing that Cole’s journey, ultimately the outcome of our TTTS journey and essentially Cole’s loss of life was not in vain.
Last week I spoke to one of my favourite parents at my work and shared the line ‘either it makes you bitter or it makes you better….and I’ve chosen to have it make me better’. This can apply to so many situations in life but most especially to unexpected loss. I could have chosen, like others I’ve sadly encountered over the years, to live in sadness, regret, anger and hopelessness. Or I could choose to do what I’ve done and find a way to make the best, the most hopeful, the most joyful outcomes come out of our situation and in that, to find peace.
Something else that I really feel I must share is that, in my opinion, being part of a support group after the 'crisis' has passed and you aren't in 'need' of support has to include a mindset like what I mentioned above, or what is the point of you being there. I don’t mean to say that everyone who isn’t in the throws of a diagnosis or the early stages of coping after delivery or loss should not be present in a support group. By no means. There is no linear format to trauma or loss and let’s face it, no matter what your outcome is, a crisis like this is trauma and loss producing in some way. But a support group should not be there to build you up AFTER you’ve successfully overcome the crisis. To me that is a form of selfishness...perhaps unaware selfishness, but selfishness all the same.
So my message to anyone still reading this is to make life better, not bitter. To take all that life offers you and find a way, somehow, to find your hope again. Make your joy come from all you can do to help another person walk a path you once took. And in that the journey becomes so very worth it!
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