Parenting Tips for PD Mom’s- who have chronically ill children. By Maria De Leon

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“Blessed are those who mourn for they shall be comforted.” Matthew 5:2

As we begin this week’s celebrations on behalf of the most important person in the world to every child their mom, I want to dedicate this blog not only to all the wonderful moms around the world especially to those who despite having PD also have to raise children with chronic illnesses.

 The truth is that motherhood as wonderfully amazing as it is it never ends even when our kids are grown with their own kids.

Now that I am a mother, there so many things I understand which I did not fully comprehend as a young person. I am sure all of you know exactly what I am talking about. One of which is the pain that a mother feels when one of her own gets hurt or becomes ill. There is nothing we as moms would not do to make it all better. We would trade places in an instance with our children despite their age if it meant spearing them from pain and shielding them from any hardship. Now I fully understand my mother’s look of pain when I was diagnosed with PD.

For us who have a neurological disease like Parkinson’s is heart wrenching to see our biggest worry materialize in the form of our illness suddenly sprouting in the lives of our own children.

Besides crying and praying for mercy and sparing of our loved ones, a mother’s heart has to be stronger than ever to help bear and shoulder the burden.

When it comes to our own children, their happiness and health overrides any possible discomfort or pain we might feel as mom’s…even our own physical ailments suddenly become trivial taking a backseat to the problems of our own children. We have to somehow mustard all the energy we have to aid them in their new journeys …from denial to acceptance. We must also learn to lead by example so they too can have full meaningful lives’ despite their shortcoming.  Suddenly things like grades and attending the best schools in the country fade in comparison to the wishes we as mothers have of having and raising healthy, well -adjusted individuals capable of pursuing their own dreams. Sometimes their illnesses may be so severe that they will never have a “normal” life but they can still thrive in their own environment surrounded by your love.

Despite the feeling that sometimes we are ill equipped to handle our own illnesses much less that of our kid’s illness, we may feel at a loss, alone or abandoned. But, I am here to tell you that you are not alone and that God makes no mistakes. I assure you that He knows exactly what you and I need and what you can give that child.  He gives each and every one of us just what we need to rise to the challenge.

Remember to not let your identity become defined by your child’s illness. Just like our disease does not identify who we are. This is especially important because sometimes we can get so caught up on being a mom of a child with neurological disease  (or any other chronic illness) that we resist when they want to have their own life and spread their wings …I often think of that wonderful movie- ”The Other Sister” directed by Gary Marshall and starring Juliette Lewis. It is a movie of the mothers love and struggles and guilt for wanting to protect her child from life’s adversities because she has a disability. But is also about learning to let go and trust in the bond of love between mother and daughter (child).

Letting go can be more terrifying especially if other relationships have been sacrificed. You must set an example and continue to strive for a full life for yourself and for your kids. Encouraging them and allowing yourself to experience a full array of relationships.

Be present in their lives without hovering over them. Remember to allow yourself the roller coaster of emotions by being honest. Don’t sugar coat or trivialize your plight. It most definitely sucks to be ill and especially to be ill with a child who has a chronic disease!!!!

“Being a mother is learning about strengths you didn’t know you had.” —Linda Wooten

Just like in living with our disease and parenting – we still have to maintain schedules and discipline- at the beginning is all chaos but soon you will get into a groove and set your own schedule that works for you and your family even during exacerbations and or hospitalizations. Simply because we get sick or our kids get sick does not give us a free pass to throw all rules and discipline out the window – younger children/ toddlers/ infants need much more constancy, consistency,  and discipline

Another thing to remember is to keep your stress under control because it not only will exacerbate your symptoms but may create tension in the house hold and cause fear, and stress in those you are trying to care for causing the child to become withdrawn, isolated or introverted …don’t focus on the disease. Let them adjust on their own they will surprise you. Give them space and room to grow- always maintaining open lines of communication and be honest

It’s a fine line between being concerned, making sure they get appropriate treatments, and making sure they understand severity or implications of disease while letting them grow up with normal dreams hopes aspirations and desires. I am still learning one step forward 3 steps back.

In the end you will develop an even stronger bond and create more compassionate empathetic human beings.

@copyright 2019

All rights reserved by Maria De Leon MD

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