Fighting the Disease
“We’re all finding it hard to stay strong given the obstacles we’re facing and the way all of our lives have changed since our child’s illness was diagnosed.”
The fight of your life is now in front of you. The enemy or obstacle is a medical illness that has changed the fabric of your life and your child’s life. Now the challenge is how to gather all of your forces: personal, physical, spiritual, financial, emotional, social and creative. Try to focus them on conquering and overcoming this condition and on surviving despite what you face right now.
Your deepest hopes and desires are to eliminate the illness completely and absolutely from your child’s body and soul and your lives. This is no easy task. You must thoughtfully and intentionally gather all your resources to make the very best plan and the most informed decisions. You must pursue the best medical team available to you so that your child has the best chance for recovery and restoring as much as humanly possible of their former life.
No matter what, the outcome will leave you changed. The territory is unknown and indeed frightening. You each will find yourselves in situations you never dreamed of. But you will do it. Though you would never choose this, you can lean on parts of your self that you never knew existed to get you can get through it. You need to believe with all your heart that you can and will do the very best for your child.
This is a time to try to consciously surround your family with people, resources and materials that are hopeful, but realistic, that will energize and push you forward. Find people who can add to and be a catalyst for your strength, which can rejuvenate you when you need it and restore your hope when it wears thin. Seek out others who are an inspiration, a source of personal and spiritual strength that you can add to your success team. It is possible to fight the disease in a way that does not result in the unnecessary loss of friends, family, medical advisors, alienation from your vital supports and mentors.
Depending on your child’s condition, there may be several treatment options available. You and your medical team will discuss which treatment priorities and options will make the most impact on your child’s illness right now, given the expected outcome of the treatments or therapies. There may be some that are appropriate now and others for sometime down the road if needed. Staying informed about the benefits and burden or physical implications certain treatments will have on your child will enable you to be more at peace with your decisions. The response or results anticipated in your child’s unique situation will influence your options. There may be good rationale to initiate a certain treatment or therapy, but it will need to be evaluated depending on how your child responds, the severity of side effects, and how how much it impacts their overall wellbeing overall. You can decide together what the balance needs to be.
Supporting each other as a family
Fighting the good fight can also have devastating effects on a marriage, on other children in the family, on work efficiency, financial situations, etc. Seek and accept the help and guidance of the counseling professionals on your child’s care team to support all of you as you adapt to the new demands in your lives. No matter what the outlook is for your child at this point, you will experience grief in letting go of what was just normal life until now, and having to make such huge decisions in the midst of new emotions, sadness, fear and worry. It is important to understand how normal your response to this jolt to your reality is so that you can see it for what it is and get the comfort and support you need to get through it day by day. All of your lives have changed and parts of your previous lives have been lost. You may search desperately to reclaim what you had and grieve for the normal life you had before your child’s illness. Sometimes understanding what you’re feeling and naming it can make it less scary and overwhelming.
Consideration and planning at this phase of the illness can make a long term impact on how your family will survives it and how each of you can find ways to thrive and continue.
Here are some ideas for supporting each other:
- Be flexible with each other.
- Strive for attitudes of patience and forgiveness.
- Family conversations at this stage and throughout the illness experience will help you all adapt through a changing landscape of ups and downs.
- Check in regularly with each other.
- Plan a survival strategy for each of you; honor and respect the way in which each of you cope.
- There is suffering enough dealing with all the worries and sickness. Do everything you can to minimize the individual suffering along the way to preserve your family.
- The “Fragile Universe of Family” can be maintained and well preserved with thoughtful attention to the needs of children, parents, spouses, grandparents, etc.
- Rest, escape, humor and tending to your own physical, emotional and spiritual needs over time will build strength into your family, bringing consolation in tough times and joy in good times.
Family is a living thing, changing daily but at the same time providing a source of steadiness and solid ground in stormy times, and a place of refuge, comfort and love, no matter where you are. Together or apart, you will need each other. Each of you brings a special gift to the circumstances and can be powerful medicine for someone else at the right time. There is no family like yours and it is worth protecting, fighting for and preserving.
Hope is a powerful and necessary ingredient in fighting your child’s illness. Hope comes in many forms: information on test results, a message from a friend who cares, a prayer that speaks to your heart, the sun shining after a difficult day, a good night’s sleep, a touch or caress, and a smile from your child or family member.
Everyone needs hope, but when your child has a serious condition, the need is intensely magnified. Some parents describe hope as a physical energy that helps them to keep putting one foot in front of the other, day after day, forging through the difficult and tiring times. It mobilizes something deep inside us that things can be okay.
You have more within you to help you do this than you may possibly believe today. Believe in yourself and your child and keep hope alive.
Article contributed by Liz Sumner RN, BSN
Palliative Care Coordinator, The Elizabeth Hospice