From One Mom of a Chronically Ill Child to Another

Dear mother of a chronically ill child,

First of all, let me tell you how sorry I am for both you and your child. The journey ahead is not easy. I know. I am in the trenches right next to you.

When my daughter was 21, two years ago, she had a serious adverse reaction to Cipro, a fluoroquinolone antibiotic she took just before she graduated from college. This has been the most heartbreaking and heart-sickening two years of my life and also brought us together like never before. There are definitely some gifts that have come out of this journey and I am now able to see a glimmer of light between the clouds and a little color on the horizon. From this vantage point I’d like to offer you some support.

I imagine that, like me, you are feeling a combination of grief, anger, resentment, hopelessness… your world has been upended and things are not the same. Your dreams for yourself as well as your child may have to be put on hold. This is a painful reality that may make you feel like you are stranded on an island while all the other children and parents you know go on about their lives. These negative emotions may all show up on your island like uninvited guests. Yet they will need to be cared for as well as your child’s needs, or they may drown you..

These are the things that have helped me the most:

1. Find something to be grateful for every day. Even if it is just noticing the beautiful color of the sky, it will help lift your spirits. Write down, yes actually write down, five things every day that you are thankful for. I promise you, even in the midst of this there are some things that you have to be grateful for. This gratitude process is for you and also for your child. He or she needs you to be a light in this darkness and there have been many studies done that confirm the healing power of gratitude and beneficial effects it has on physical and emotional well-being.

2. Never miss an opportunity to cry. Set aside a time regularly to let your heart spill over. Every tear deserves respect. This will help you be the strong support your young person needs without making him or her deal with your pain as well as their own.

3. Find something to enjoy with your child in the midst of this illness. We follow a rescue group on Instagram called Black Jaguar White Tiger as well as a Mastiff rescue group. In addition, my daughter actively looks for funny and/or cute videos to share on YouTube. This has become our morning ritual rather than just endlessly dwelling on what is (still) wrong.

4. Get a good therapist and see him or her as often as possible. Again, you need support so you can be supportive.

5. Eat well, exercise, walk, read, write, pray.

Think of four legs at a table — each one needs to be balanced.

The first leg is for your own physical body. Do what it takes to nurture yourself so you can be present for your child. Eat well, rest when you can, exercise and or walk. As Les Brown said, “When things go bad don’t go with them. ”

The second leg is for your mental needs — read something, learn something, open and use your mind daily so you literally don’t lose it.

The third leg is for your spiritual needs. In whatever way works for you, ask for help where you need it the most — pray, go to a church, synagogue, mosque or temple. The spiritual realm of your understanding is available to support you. Ask for help from invisible means.

The final leg is for your own emotional needs. Find a therapist or somebody who can help you hold this terrible burden. The benefit of a therapist is that you won’t feel any guilt for burdening them and they are trained for this kind of work. (By the way, if the first therapist you try doesn’t seem helpful keep trying until you find the right one.)

Finally, imagine yourself five years from now and ask how do I want to look back at this time and see how I dealt with it. What do I want my child to remember about this time? What do I want to be teaching my child about getting through difficult times?

My heart goes out to you. May whatever is going on bring about far greater healing for both you and your child than you could ever imagine.

With lots of love and respect from one mother to another.

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Thinkstock photo by Nomadsoul1