Getting On With Your Life...and Other Myths

Whether your child (or adult child) is disabled from birth or becomes disabled as the result of a life altering event, there is never a shortage of well-intentioned advice givers. Every parent instinctively makes a lifetime commitment to their son or daughter's care because it is simply the right thing to do. Obviously, this takes an enormous physical and emotional toll. Friends and family are often at the forefront in offering suggestions on ways to cope.

Most often repeated advice: "You need more help..."; "You need to get on with your life ..."; You need to get closure..."; and "You need to plan for a place of care when you are no longer able to do it yourself...." Everyone is often long on advice and short on direct help or substantive relief.

Yes, we do need more help (hired, of course), but in whose hands would you trust your child? Yes, we need to get on with our lives, but our child IS OUR LIFE and we choose to embrace that life with passion (it just doesn't look like every other person's life). Yes, we are told we need closure surrounding trauma which we witnessed and live with daily, but closure is an impossibility and we choose to embrace what IS; you don't just get over it. And yes, when caregivers get old, you need a plan for your child's care, but "not being home with mom and dad" is neither a passionate nor a compassionate plan for the future.

So, we have each other as a family and we will endure. We are happy with a warm cup of coffee and kind words and your presence. "Love is simply being there when you don't have to......."

Near-Drowning....Then and Now

A few mornings ago, while watching the news and getting Adam ready for his day...ABR, ABR and ABR...and a walk, reading and the movies, there was an interview with a Colorado family. Their two year old son was involved in a near-drowning in July. He was underwater for twenty minutes, given CPR and flown to a hospital where his body was kept cool using ice while in a medically induced coma. Except for the age of the child, this story was similar to Adam's. However,when Adam was life-flighted to a trauma center (twelve years earlier), they warmed his body and the outcome was that Adam was severely brain injured. Listening to the story with a lump in our throats, we are happy for the fully recovered little boy and sad for our young man. Doctors could give the family little assurance that the cooling of the body would work. Obviously, this procedure should be standard in cases of near-drowning. Wishing that "now" was "then", only takes us away from the present.

People have many misconceptions about the word "near-drowning." The severity of the injury depends upon the amount of time that the brain was deprived of oxygen, the age of the victim and his/her physical condition, temperature of the water, etc. Near-drowning does not mean that the person did not drown and that they are fine. Since Adam's accident, we have seen few near-drowning survivors, though we have seen many brain-injured children and young adults. People often ask if Adam has cerebral palsy because he has contractures at his elbows, wrists, ankles and knees. Basically, it comes down to a lack of oxygen to the brain and the part of the brain that is effected ( in Adam's case, the basal ganglia), This lack of oxygen often results in a collapse of the musculoskeletal system. We have discovered that the therapy ABR (Advanced Biomechanical Rehabilitation) addresses this specific issue. The inventor, Leonid Blyum, refers to ABR as the back door to addressing the structural effects of a brain injury...volume, mobility and then function.

For The Long Haul

One day we were a highly functioning, tightly knit family - two professional parents with two beautiful and active children. Then, a significant life-altering event occurs, the near-drowning of our youngest child, Adam Dzialo. We found ourselves regrouping around a severely brain-injured child. We have been involved in this dance for more than twelve years now. We know about the highs and the lows, the light and the darkness, the confusion and the wisdom. We also know that there are other families who have experienced similar challenges. Our old life, based on family, work and community connections has vanished and we have found it necessary to create a new life and community for Adam and ourselves.

By initiating this blog, we reach out to others who have experienced similar realities and challenges. We choose to keep Adam at home with us, providing a rich and enlightening life for all of us. We are willing to share our story, our strategies and our good and bad days.

Some of our future blogs will include:

• understanding the reality of near-drowning events, possible and probable outcomes
• the concept of "extreme care giving"
• the financial realities of caring for the severely disabled in the home
• the world of therapeutic options, alternatives to western medical ideology
• confronting service systems "intended" to provide help and assistance
• perspective and balance in one's inner and outer life