Raising a young child with special needs isn’t easy. But neither is parenting an adult child with special medical needs. But as guest blogger Kathy Guzzo has learned, there are ways to better parent a child with medical special needs. And in today’s post, she shares some lessons she’s learned not only about parenting an adult child, but also parenting from a distance.

Mother Knows Best: 3 Ways to Parent a Child with Medical Special Needs

When our children were in what I consider the ‘Mommy knows best’ era of their lives and became ill, they expected me to make them feel better.  I eagerly accepted this role, because as the mom, I was pretty sure I did know best, so the fact that they also felt that way made the nursing and caretaking much easier for both of us.

Of course, with four children there were the snubs at taking horrid tasting medicine, or pouting when they realized that sick, meant sick, and not going out to. But overall, my children trusted me to help make them ‘all better’, whether it be the medical aspect consisting of doctor’s appointments, medicine, or the nurturing aspect of cool cloths on the forehead, rubbing their backs, and chicken soup. Then of course there was the behind the scenes aspect they were unaware of, such as rescheduling an entire week when a child became ill, finding babysitters for the other kids when one had a doctor’s appointment, adjusting the budget to pay for the medicines, doctor’s bills, and missed work, as well as the calls to the insurance company when benefits were not paid correctly. Regardless of whether it was the practical, nursing or nurturing aspect of having an ill child, I did what needed to be done because of the love I have for my children.

Yet even with all the experience I gained by having young children deal with serious illnesses such as chronic pneumonia, and temporal lobe seizures, I was not prepared for being the mother of a child diagnosed with a serious chronic illness as she anticipated venturing into young adulthood.  My naiveté in this area caused me to make mistakes and lose sleep as I was tried to figure out my role.

Choosing My Heart Over My Head

When diagnosed two months before she was to begin college, the lupus had depleted my daughter’s energy and ability to fight off any illness. The tests, doctors’ appointments and treatments were overwhelming, and my thoughts varied from She’ll be fine by August to What if she’s not?’ The latter thought created more concerns. Her plan was to attend a school 100 miles from home, and her doctors were also 100 miles from the college, but only 50 miles from us.  My head wanted her to choose a college closer to home, knowing having her nearer would bring me peace of mind. But after numerous discussions with my husband and countless prayers to God for wisdom, I went with my heart, which knew that regardless of my need to have her close, she needed to begin to spread her wings.

Communication is the Key

The logistics of her location did come into play many times throughout her five years of college, but because we had worked together to anticipate possible problems it didn’t cause either of us major anxiety. We tried to schedule her regular appointments on days she didn’t have many other obligations, and we informed her professors of her situation so they were aware she might miss classes. After informing them of her situation, her specialists were willing to work together to schedule appointments on the same day. They were also great about getting any medical tests she needed done while she was there to avoid another four hour round trip. Also, after discussing it with her specialists, they located a doctor and hospital close to her college they could work with for minor illnesses or emergency situations. The key for all of the above to work was developing open communication with all those involved, which isn’t always easy to do, but the results are worth the effort involved.

Learning to Pick My Battles

Another thing God had spoken to my heart during the initial months of her diagnosis was that in the war of fighting her illness, I would need to learn to pick my battles based on importance, and battling over her college choice wasn’t top priority in helping her navigate adulthood with a chronic illness.  So as situations arose in our journey of navigating her illness I continually asked myself, if it was a battle to be fought or an area I need to help her find solutions.

What Lessons Have You Learned about How to Better Parent a Child with Medical Special Needs?

As Kathy shared the lessons she’s learned, did some things you’ve learned come to mind? Please, if you have words of wisdom that could help another parent, please leave a comment. Someone will be glad you did!

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