written by Megan Loden

What is this independence and what does it mean for a parent? How does that differ from parents of typical children and parents of medically complex children? Independence comes from the word independent meaning freedom from the control, influence, support, aid, or the like, of others, according to Dictionary.com.

We think of independence as a right of passage for teens, young adults, and even their parents. I may never forget the first time I was able to run to the store for bread and leave my children at home alone for fifteen whole minutes. Of course, I peppered them with pop quizzes before I left. “What do you do if someone knocks at the door?” “What happens if the power goes out?” “What door would you use if the house caught fire and who would you go to for help?”

As children age, the expectation is that your children will gain more independence and these short stints to the store will get longer. From the 15-minute trip to the week-long anniversary trip. That’s what we’re all waiting for, isn’t it?

When your children are handed a major medical diagnosis at age 16, you see that independence slip away. It slips away from you and from your children. You see that you may never get that week-long trip on a cruise ship. You may have to settle for a long weekend staycation nearby just in case. Your daughters won’t be able to go three hours away to college like they had planned. They will live at home and go to the local community college. They will need a new life plan.

You all will.

So, how is a parent to deal with this shift? How are we to manage this new expectation? First, it’s important to acknowledge that you are grieving. You are grieving the life you thought you would have. You are grieving the life you thought your children would have. It is OK to grieve this new reality. None of this makes you ungrateful or means that you don’t absolutely love every bit of your child. None of this means that you won’t do everything you need to for your child.

Second, it’s time to adjust your expectations a bit. So that week-long anniversary trip is off the table for now. How far would you feel safe traveling? Six hours away by car? 35 minutes? Figure that out and know that it may change as time goes on. That’s okay, too. That time with your partner is important and needs to remain a priority but get creative about it.

While we’re on the subject of planning, maybe don’t plan too far ahead. It’s important to have things to look forward to and to put that Special Needs Trust in place. Other than that, don’t think too far ahead if you don’t have to. I don’t plan more than three months ahead. Sure, we have goals, dreams, and ideas swirling in the back of our minds—but no concrete plans. Plans are always subject to change and even more so when you live a medical life, aren’t they? Heck, even this rule is subject to change. It used to be six months, but things have changed, and we had to reign it in a bit more for now.

Independence can be elusive to parents of these children. Gone are the days of picking up and going on a whim. We are beholden to appointments, equipment, medications, therapies, and symptom management. We are more aware than most that things don’t have to be perfect to be good and we have a unique perspective on what independence means to us and our families.

Megan is a mom to twins — identical 18-year-old girls — and a 14-year-old son. She, her husband, and kids live just outside of Phoenix. She is a writer, caregiver, and mom. Maybe most importantly, Megan is also an advocate for rare diseases and rare disease caregiving. She feeds her soul with her career and works at ANGEL AID CARES uplifting other caregivers. She is currently working on the HODA Board of Directors in Operations in her “free” time. She has been published on Scarymommy, The Mighty, Rare Revolution, Sammichesandpsychmeds, Bluntmoms, and Twiniversity.

Follow her on Facebook, or Instagram or her check out her website meganloden.com