Having two disabled children who have miraculously reached their late-30’s and having kept myself out of the snake pit and the abyss up until now, I’ve been asked to share my caregiving secrets for not only surviving, but growing into my fuller spiritual potential.
Dealing with disabilities in children is one of the most harrowing, difficult, heart-breaking challenges on the planet – if you dare to care. Yet it is juxtaposed by the most illuminating, gracious and heart-felt experiences you could ever know. If you simply look deep into the eyes of the disabled or their parents you can feel God.
The truly great on earth are those who accept their less than perfect lot with simple elegance and grace. And those dedicated to serving them are the queens and kings among us. Having spent chunks of time in the realm of life and death and knowing other brave disabled children and their heroic parents and caretakers, has truly been a gift that always makes me resist getting back to the “real world” of glitz, glam and gossip.
Its always been at the most difficult, white knuckle time that gems of how to cope, let go, advocate or live in the moment reveal themselves. So let me share the top 10 tips that I’ve learned and continue to cultivate.
1. Always take care of yourself first – for all the obvious and intelligent reasons. Your disabled child or grandchild needs you to be strong and happy, not weak and resentful.
2. Don’t engage in never ending pity parties, but do embrace your pain, fear, anger, concern and talk it out – or better still write it out of you onto paper or a computer. They say a life worth living is worth recording and the strokes of brilliance that will come to you with the practice are incalculable.
3. Find a faith that speaks to you and then you speak to it.
4. All there is is NOW – every morning smile, afternoon nap, movie outing, playtime, story time, conversation, goodnight kiss is golden – embrace and be in the moments of life.
5. Its useless to ask “why me?” Its brilliant to ask “how can I?” Our success or failure is linked to the kinds of questions we ask – so why not make them empowering ones?
6. Wonder Woman and Superman are fictitious. Well-organized, askers of help are the real life heroes. Take mental vacations as often as necessary. Make sure everything is taken care of by others and then check out to your favourite activities, head space, places of solitude or rejuvenation practices – simple or complex – it doesn’t matter to anyone but you.
7. Organize, streamline, simplify – I’ll say it again – organize, streamline, simplify. And one more time – organize, streamline, simplify.
8. Gather as many like-experienced as you can and cultivate friendships you can truly be yourself with. Share with each person only a little bit so as not to cause friendship burn-out. Then rotate, rotate, rotate and journal, journal, journal or better known as the dance of restoration.
9. Be true to yourself and your child(ren), grandchildren, parent or spouse. Don’t under nourish your able-bodied kids or family members expecting them to help carry the burden. But they can certainly help and share in the load – their personal growth and reward will be great with loving planning.
10. When you have to prepare for both living or dying at the same time, know its the doorway to all the Gods, in all the realms, in the most simplified way imaginable if you let go. Embrace, dig deep and ask “what is the gem in this situation?” Its the most healing, real and authentic action you can take.
Whether you have disabled children (of any age), spouse or aged parents, these tips can help in any situation where someone else is counting on you for so much.
I would like to thank the angels that have drifted in and quietly left my life; the parents whose incredible elegance has left me awe struck for eternity at their heroism, grace and endless capacity for love; and the children with disabilities of the body but abilities of the soul who share their humility, strength and courage in the most amazing ways. I remain truly grateful and humbled for having known you.
– Sharon Danley
Mama Bear to Andrea & Matthew
Note: Since the writing of this article, my Darling Andrea succumbed to her epilepsy and has left this realm. She taught me so much about real love and acceptance. Her legacy’s precious mantra “Peace, Love, Hope & Joy” will always be with me and her spirit as my guide.
This article was first published here.