Another thing that Heather shared with me was 15 Tips that her mother, a mother of 4, 2 of which had CF, put together to share with other families dealing with a disability or an illness. I read it and I felt justified in my feelings. I don't like them all, but I feel them all. I don't like that our lives are so different than they were just 4 short months ago, but I wouldn't trade it. Its just taking some getting use to. If it weren't hard enough dealing with this all - the emotions, the stress, the exhaustion, the doctors, etc, etc, etc, - its hard to see how our friends and relatives take it and I wonder and worry what they think and how this all affects them and us and our relationships. Its hard.
Here are the 15 tips:
These tips are based on the experience of Doug and Donna Summerhayes, founders of the Canadian Cystic Fibrosis Foundation and parents of four children, two with Cystic Fibrosis. Their daughter Pam died from CF at age 26. They are still involved in caring for their son Jeff, who at 48 is one of the oldest Cystics in North America. Their well son Gregg is a police officer and married father of four. Their daughter Heather is the author of “Sixtyfive Roses: A Sister’s Memoir,” which tells the story of how this family fought for their children’s lives.
· Share "important" information and understanding regarding care programs with your little family and your extended family and close friends.
· Do not try to satisfy the extended families "standards" or expectations. You must do what is right for your family and not what extended family or friends expect. Remember that you will never "be the same as everyone else," so don't try.
· Remember that you are husband and wife first. How the marriage is nurtured will preserve your union and reflect on the care for both the disabled child and your well children.
· Consciously develop your sense of humour.
· Make sure to get adequate exercise and rest so that you don't develop your own health problems. Try not to over schedule yourself. Organize some care relief if possible, even if it’s just an hour or so a couple of days a week, so you can nap or take a walk.
· Remember that you may not be able to do everything alone. Swallow your pride and ask for help. Make your specific needs known. Graciously accept the help others are willing or able to provide, remembering that everyone has their limitations. When help arrives, don’t spend all your time and energy hovering or directing them – go do what you need to do!
· Encourage your disabled child to do as much as he/she is able, just as you would your well children. Dwell in possibility. Include them in all family functions and outings.
· Set aside special, individual time for your well children – even if it’s just a once a month parent/child date. Make that date sacrosanct, and if it has to be cancelled for a medical emergency, make it up asap. By the way, cleaning the garage together is not a date. Let the housework suffer and create some fun instead.
· Just as you may sometimes suffer resentment and guilt about your disabled child, remember that your well children feel the same. This is natural. Acknowledge and validate those feelings, and work with your well children to find appropriate outlets for them.
· Get family counselling. Think of it this way: if you’ve never gone mountain climbing, you wouldn’t just go to Mount Everest and start up - you would seek instruction. Each stage ofraising a child with a disability is something you’ve never done before. Take some “mountain climbing” lessons. Counselling will also give you a safe place and space to voice your biggest fear, your deepest anger, and your most profound grief.
· When you feel overwhelmed with the demands of treatments, care, housework, cleaning, outside commitments and pressures, STOP (Sit, Think, Observe, Plan) and regroup. This may take several days but it will pay off in clearer thinking and happiness.
· Recognize that you can’t control life by being afraid of it. So often we make our decisions from a place of fear. Fear separates you from your abilities. It does not protect you, nor will it alter an outcome. Instead, focus on your power to choose your response to any given situation – you can choose faith over fear, hope over despair, and allow yourself moments of joy even in the midst of sorrow.
· One of the good things about dealing with illness or disability is that it forces you to prioritize. That being said, don’t burden yourself with a lot of “shoulds” that you will just end up feeling guilty about. Know your limitations, and focus on your strengths. Take it one day, one hour, or one minute at a time.
· Make a plan for your disabled child to be cared for in the event of your own illness, injury or death. Don’t just leave it to the well-siblings.
· Make forgiveness a practice in your home – starting with yourselves.