Care Takers need Care
Emily Perl Kingsley once wrote about having a child with a disability:
It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans.
The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay…
Being a parent is a hard enough job, but being a parent of a special needs child can be exhausting, heart-breaking and challenging. Because these children’s requirements can be so energy / emotionally / financially consuming, family members – especially parents – often find their own needs unmet. Too often marriages shatter under the weight of these challenges.
What if you dreamed of having a baby, and then found out this precious child had some sort of disability? Unless you’ve experienced this, it’s hard to imagine the difficult emotional and physical journey you and your family would endure. Can you imagine how many doctors you would go to looking for a 2nd, 3rd or 4th opinion? Can you imagine the financial stress as you searched for answers? How would you deal with family members and friends who don’t always know how to help? How helpless would you feel?
How would you deal with the loss of what “should have been?” How would you handle the worry about trying to plan for the future, for who will care for your child when you are gone? Could you afford physical modifications to your home if your child needed wheelchair access? Could you give injections or clean feeding tubes or change a teen-ager’s diapers? How would you juggle therapy, doctor and social work appointments around the rest of the family’s needs? Could you handle the pain and rejection of a child that didn’t respond to you emotionally, that seemed to just look through you?
When would you have time to deal with your own emotional process? Could you make the time to mourn the loss of the child that “should have been” while dealing with the very real challenges of the disability? Where would you go with the grief, the pain, the depression, the anger and rage, the loss of faith, the guilt, the shame, the pleading with God, the numbness and exhaustion, the wanting to give up…the knowing that you cannot?
How would you move through your process so you could be the best parent possible and find a way to see your child as special and unique instead of broken and lacking?
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. [Holland is] just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's …less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
At Pathways, we have witnessed parents make the journey from grief and despair to celebrating the beauty of their special needs child. We have been honored to be a part of a parent’s freedom from limiting beliefs and into the real JOY they can have with their child…regardless of the child’s abilities or disabilities. That’s why we created the Kayden Joy Fund for Families of Special Needs Children. This fund helps parents and siblings of special needs children attend any Pathways training. We believe these caregivers not only deserve to care for themselves, they and their families deserve to live fully and passionately.
Guidelines for Eligibility:
Process for Application:
Pathways Core Training, Inc. is a 501(c)3 non-profit organization whose mission is to create lives of passions, purpose, and success for adults, teens, and families by empowering people to overcome, heal, and transcend internal barriers. By doing this, we create a life by design, not be default.