It’s a parent’s responsibility to love and protect their children and keep them from harm’s way, allowing them to grow up strong and healthy.  That’s the normal way most people look at parenting.  But, what happens when their child is diagnosed with a chronic illness like MPS?  Aside from worry and gathering all the information and resources they can find to help their child, parents often deal with overwhelming stress, anxiety, depression, and even guilt.  Sometimes a parent withdraws from their partner instead of leaning on them for support.  Stress is also significant in a single-parent household.  The combination of caring for a chronically ill child, dealing with the expense of medical treatments, taking needed time taken off from work, and caring for other members of the household is all overwhelming.

What is MPS?

Mucopolysaccharidosis or MPS is a category of metabolic disorders which are caused by a specific malfunctioning enzyme’s inability to break down specific molecules.  These unbroken molecules collect in blood, cells, and tissues causing permanent cell damage.  System functions, mobility, cognitive development, physicality, and appearance are all impacted. Severity in disability and symptoms depend on which category of MPS the child has.  In some cases, life expectancy is shortened.  Currently, there is no cure for these disorders.

The Need For Self Care.

Parents with a child who has MPS finds their life revolves around the care of the child.  Some parents need to give up their jobs to provide full-time care.  They experience isolation since so much time is spent at home, and they lack a social life.  Self-care is needed, There are several ways to deal with the stress and anxiety that are healthy.

  1. Get in touch with the local MPS Society and learn about parent support groups activities.  These parents share tips, compassion, and support. Strong and lasting bonds form through these groups.
  2. Group therapy — Another form of support is group therapy. Sharing feelings of frustration, guilt, and desperation with people going through the same situation under the guidance of a therapist is cathartic and helps get through tough times.
  3. Individual Cognitive Behavioral Therapy. This therapy is successful in helping parents cope with their child’s illness.  In studies, CBT was shown to greatly help parents of children going through treatment. It helps ease stress, behavior, and family function issues.

Self-Medication or Self-Care

The diagnosis is a tough one for parents to take. Feelings of guilt and self-blame are common.  Although in pain, a parent may be reluctant to focus on their self-care when the needs of their child are so great. The temptation may arise to attempt to self-medicate with alcohol and keep going. Before long, the parent isn’t only dealing with stress related to their child’s disability.  The parent discovers they need help for drinking problems, too. Sometimes people dealing with this level of stress and anxiety turn to alcohol to cope with their pain.  What might appear a solution in the long term makes the situation even worse. When this happens, it’s important to get professional help.

Meditation and Yoga

Learning to relieve stress and anxiety through meditation and Yoga is another healthy approach for parents of chronically ill children.  The fight or flight element affect brought on by excessive stress can lead to parents adopting undesirable behaviors to cope like substance abuse. Along with getting professional help for their drinking, learning to relax through yoga, meditation, and visualization stimulate the parasympathetic nervous system and allow The Relaxation Response to shut down dangerous reactions to stress. There are other healthy ways to unwind and relax. Some of these techniques include:

Mindful Stress-Relief and Relaxation Techniques — Studies on the parents of chronically ill children engaging in mindful exercises showed positive results. Less stress to changes brought on by the child’s illness to family life and a reduction in stress-related worry. These results came from a study using Mindful Meditation and Hatha Yoga.  Positive results occurred even in people without experience in meditation.  Mindful meditation and yoga enable parents to relax, clear their thoughts, and release stress and anxiety.


Exercise is a healthy way of reducing stress.  Parents who are the primary caregivers to their child with MPS may believe they don’t have the time to dedicate to an exercise program.  But, exercise is great for relieving stress and anxiety so a regular routine is desirable. Stress attacks the nerve centers of the brain.  Exercise releases healthy endorphins in the brain to relieve pain. Regular exercise helps the parent relax and handle stress better. Family members, friends, and in some cases Respite Care may provide relief for the parent to follow an exercise regime to lower high-stress levels.  Respite care is a wonderful service for caregivers who need time to take care of their personal needs.

Make Time to Do the Things You Enjoy

While caring for someone with this diagnosis, you must also find time to do things you love to do. It will help you to unwind and relax while refreshing yourself at the same time. It is a challenging experience to care for a child with MPS so you must find ways to recharge so you can be your best you for your child.

Respite Care Service Options

In most cities there are opportunities for respite care services. This means you can find someone who will care for your child just as you would while you take some downtime. It could be for a couple of hours or for an entire day that you head out. The respite care services provide your loved one with the specific care they need while you’re running errands, enjoying lunch out or just window shopping to rejuvenate.

Talk to a Therapist

Caring for a loved one with this type of diagnosis can truly weigh on you mentally, physically, and emotionally. For your own sake, it is best if you find someone such as a therapist or counselor who specializes in this type of work. They can assist you with ideas to help in your child’s care, to make sure you’re doing the best you can, and to make sure you stay well.

Author Bio: Patrick Bailey is a professional writer mainly in the fields of mental health, addiction, and living in recovery. He attempts to stay on top of the latest news in the addiction and the mental health world and enjoy writing about these topics to break the stigma associated with them.

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