Truths about Being a Special Needs / Medically Complex Parent!

As a special needs parent you find yourself in situations that most of your friends and family won’t even know about. You will think about different things and life may be more complicated for your family. Although life can be hard sometimes, it is good to take time to laugh and have fun. Laugh at yourself. Laugh at others. Even, laugh at your situation. Here are some thoughts about our situation, and our laughable moments.

You will…

• be forced to become organized…or get buried in paperwork and doctor’s orders.
• think about death more…and cherish every day because of it.
• be forced to get creative in order to make your child more mobile or to make life easier…or you will spend A LOT of hours on Google or Pinterest to find what you need.
• feel like if you took a test to become a doctor, you would probably pass…without having to spend all that time and money on school.
• have a new version of extended family that will now include CNA’s, Nurses, Doctors, and Therapists that you see more than your actual family…and you will want to take them everywhere with you…even if that means buying a second tent (or bigger camper) for them so you can take that camping trip.
• have more things to worry about compared to most parents.

There is a famous saying- “live in the moment”…you will have mastered that so well that now you can’t plan a lunch date with a friend for tomorrow. When cold and flu season are in full swing, you may be tempted to invent a bubble to put around your child so they don’t get sick… Google and Pinterest will not be able to help with this (If you come up with something, PLEASE tell me!).

If you have a child in a wheelchair you will have some added laughable moments.

• Goggle and Pinterest will also come in handy when you are trying to make the perfect Halloween costume that includes a chair
• You will never have a 2 door car again
• A great stress reliever is having someone else fold down the chair so it fits in a vehicle… it is side splitting funny to watch
• Get used to being stared at… give them something to stare at and wear it proudly

There will be EVEN MORE laughable moments if your child eats with a gastric tube.

• Your child is healthy because of the tube
• Someone, at some time, will pull it out. This will not be pleasant for anyone, but you will get through it… and probably do it again
• At some point, your ceiling or face, will be covered in something that you were trying to push into the tube.
• You will become the expert on how a pump runs, the alarms that it makes, and will have to teach others how to use it… including hospital staff.

Please take time EVERY DAY to laugh about something, then share those moments with me. I would love to hear your “laughable moments”.

Tracy Felix Tracy blogs about her life and challenges as a mom to a son with special needs. Her blog has provided a forum for parents to get support, share ideas, and learn. You can connect with her at  www.facebook.com/xlinked1

https://www.parentingspecialneeds.org/article/i-do-not-like-being-a-special-needs-parent-and-thats-ok/

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