Last week I attended a conference
held by a pharmaceutical company for leaders in the bleeding disorder
community. Many of the leaders were parents of a child with a bleeding disorder
such as hemophilia or von Willebrand’s. Others had the diseases themselves and
all were learning how to "tell their stories" in order to mentor and
inspire others living with the disease. These folks came from many different
backgrounds including ethnicities, geographical locations, and socio-economic
situations. Yet, we were all bound by two things in common: our resilience in
the face of medical adversity and our passion to help others cope well. It
was an amazing experience.
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| Photo by PhotoStock |
While working toward my masters degree, I was
reading from a Walsh’s text “Strengthening Family Resilience” at the time of the
conference. Everything that I was reading I was witnessing right in front of my eyes.
For example, on page 7 she says: “As researchers have discovered, resilience is
forged through adversity not despite it. Life crises and hardship can bring out
the best in us as we rise to meet the challenges.” She quotes a study on
resilient adults by Higgins (1994) that showed they “became more substantial
because they were sorely tested, endured suffering, and emerged with
strengths they might not have developed otherwise. They experienced things more
deeply and intensely, and placed a heightened value on life. Often this became
a wellspring for social activism, a commitment to helping others overcome their
adversities; in turn they experienced further growth through these
efforts." This was clearly apparent in the eyes and the hearts of the
courageous and amazing people I met within the bleeding disorder community - these are amazing people…
*********
Lisa C. Greene is the mother of two
children with cystic fibrosis, a certified parent coach, parenting educator,
and public speaker. She is also the co-author with Foster Cline, MD of the
award-winning Love and Logic® book “Parenting Children with
Health Issues.” For free audio, articles and other
resources, visit www.ParentingChildrenWithHealthIssues.com.
just got my sons health issues under control and a few days ago found out that my daughter is dying slowly , but they dont know how slowly. i feel like i cant think, eat,breathe, talk. i dont know how to find strength yet.
ReplyDeleteyou don't have to find the strength; it is already there. due to a congenital brain defect, it is highly unlikely that my oldest daughter will make it to adulthood. there will come a time when her brain will no longer be able to sustain her body and, if we're lucky, her systems will slowly start to shut down rather than her going suddenly from an illness.
ReplyDeletei've been well aware of all the ending possibilities for 7 years now. there are still days when the thoughts and worries will not leave me alone. the tears cannot be stopped some days. the pain seems to grow the longer this cruel waiting game drags on.
what keeps me going is knowing that my daughter doesn't have time for me to get lost in the depths of despair. i acknowledge that it's there, but it can NOT be allowed to run my life or my interactions with my child. every day is a minor miracle simply because she is still here, but it can take a while to get to the point of seeing that and knowing that and feeling that.
that gives me some more hope, i am still not sure how to do 2 kids in wheelchairs, need to change my home around so that i can do their physical therapy at home since we are being trained to help them since they lay down all day, i am scared about doing something wrong since i am not a trained professional. about dr appts when it is just me with 2 kids in wheelchairs? how do i do that? thanks for letting me see how someone else deals with a death sentence on their child. i know that i need to get past the tears, i am grieving my kids and myself. and taking lots of photos. i am jealous and upset with ppl who kids are healthy, 1. how did they get so blessed, or lucky?
DeleteIt sounds like you both are facing some very hard times. Life can be so tough. :( There are just no easy answers to all the things that we have to do and handle and juggle when facing such extensive physical challenges.
DeleteThere are, however, a few key areas that might help carry you through. I wrote an article called "Keeping Hope Alive During Tough Times" that might give you some ideas and perhaps a ray of hope. Here is the link: http://www.parentingchildrenwithhealthissues.com/articles/article/4270854/118302.htm
Support of course is critical both for you emotionally as well as for the "external" things you need like helping with drs, wheelchairs, etc. Try a social worker at your clinic to get resources in your community. Your church also might be able to help.
The feelings you are experiencing are so very normal- grief, anger, jealousy. One of my favorite writings about dealing with a child's diagnosis is called "Welcome to Holland." Here is a link: http://www.parentingchildrenwithhealthissues.com/articles/article/4270854/69483.htm
Take good care and thanks for reaching out. Lisa
Hi there,
ReplyDeleteResilience Through Adversity: Gaining strength from life's hardships
All vital points covered! I want to say that this post is awesome and I thank you for taking the time to share it.
That is what you have to do sometimes, just fight through it.
ReplyDelete