I’m a day late on my Dup15q awareness post for this month, but I’m excited to share with you a beautiful guest post from another Dup15q mama, JiYoung. On her blog, My Special Life, JiYoung shares her thoughts and experiences as a parent to her young son Lucas, born with Duplication 15q Syndrome – the same chromosome anomaly that my son Henry was born with.
As I have shared in a previous post, I first “met” JiYoung and Lucas on Instagram. Seeing glimpses into Lucas’ life, his growth and development, is so special to me because it is just so nice to see another kid like Henry and another family with similar experiences.
This guest post was originally published on My Special Life in March this year. In it, JiYoung gives her perspective on special needs parenting through the lens of a Hero’s Journey as explained by author Elizabeth Gilbert.
For the original post, click here: My Special Life – The Hero’s Journey
I am a huge fan of Oprah Winfrey’s Super Soul Sunday on her OWN network and although I don’t have much time to watch television, this show is a treasured indulgence I try not to miss every Sunday. On one particular episode, Oprah had Elizabeth Gilbert, author of Eat Pray Love to speak about her interpretation of the Hero’s Journey as defined by Joseph Campbell. What is the Hero’s Journey? Elizabeth enlightens us in her interview:
Some may argue that being a SN parent is not heroic at all. Some even take offense to being called special themselves and it irks them when told ,”God gives special children to special parents”. I think parents of special needs children are heroic because they answer to the challenge by accepting their children and loving them regardless. I have heard of many abandoned babies in the NICU whose parents are unwilling to care for them driven by the fear of what heartbreak lies in the future. Here is one story of a former nurse who adopts abandoned babies in the NICU due to their disability and illness (click here). There are also parents who put their children up for adoption or release them into the foster care system or relinquish them to state institutions. This act may also be deemed heroic if the decision is based on the best welfare of a child and comes from a place of love. There was a case of one parent who upon learning that one of the triplets in the womb would have neurological complications wanted to abort the fetus and when the surrogate mother refused, abandoned the newborn child. And as disturbing as it may be, there are parents who do the unthinkable and “mercy” kill their own disabled children (click here) . Yes, it isa choice to keep a special needs child and we may accept our lot kicking and screaming until the end but for those of us who never give up on our children, our choice is heroic, indeed!
Last year, Steve Bundy, vice president of Joni and Friends and author of Another Kind of Courage, spoke to our small group of special needs parents at church and reassured us that having self pity parties is OK, we just shouldn’t dwell in that space for too long. Somehow, we need to transform our suffering into grace and turn it into something good. Otherwise, it is all just wasted suffering. Elizabeth Gilbert talks about the dark night of the soul and what it is like.
EG states, “Here is what is so very important to recognize: failure, disaster, shame, suffering and pain do not necessarily make you a better person unless you participate in turning it into something good. Never waste your suffering suffering without catharsis is wasted pain. So this I learned from a friend of mine who is a paraplegic….an incredibly brilliant and graceful man named Jim MacLaren and he told me that. … People always come up to him and say,’oh, you must have become so wise because of your suffering.’ And he says, “there are a lot of people who suffered who are as stupid as ever.” I chose to take that and use my power my thinking my force to turn my suffering into grace. Otherwise, it’s just wasted pain. You’re just suffering for nothing, If you don’t transform from your pain, then it was for nothing. And that is your job. You just suffered for no reason whatsoever…So I try not to waste my suffering. When bad things happen I am like what can we grow from this.”
I am certainly not going to waste the opportunity for personal, spiritual, emotional growth L’s disability affords. Somehow, I will need to learn how to transform the pain I have into something beautiful. I pray God shows me how. Of course, there is always much to be learned from joy and I intend to make our lives as joyous as possible.
After going through the hero’s trials, EG emphasizes that it is very important to share the wisdom learned from suffering with others:
“….that is the real final chapter of the hero’s journey. The climax is the battle, …but the end of the story is you come back home and you share what you learned. And, if you don’t do that, then you don’t really get the entire journey. So, that is your obligation, too…This is what I tell people, going on the hero’s journey is not something you do for you it is a public service because what you bring back from that to your community to your family will change and uplift them and they need that. So, they need you to go over there and be a hero so that you can come back and show them everything you have learned.”
Thank you so much, JiYoung for allowing me to share your writing.
This is my favorite line:
Because the journey is daunting and there are hard parts and sad parts, but there is also joy! And we can learn from all of it, and from each other.
Check out JiYoung’s blog My Special Life, and for more about Dup15q Syndrome, please check out Dup15q.org.