Parent to Caregiver: A Gilbert Special Needs Mom Reflects on 20 Years of the Dance Between


When you become a parent you accept the reality that you are now responsible for this child, this person, for the next 18 years, at least.

You expect the first few months (years) to be sleepless.

You expect the next few years to be filled with all the body fluids.

All the diapers.

Maybe even that booger sucking baby Frida things (gag).

You expect to be needed for their survival for many years. Slowly however you start to notice they can pull up their pants on their own.

She can now spoon feed herself without making a mess. Then oh my goodness one day they go to school, you hold their hand up to the entryway and then watch them walk away, giggling with her friends.

You teach him to kick the ball then watch him make a goal while you watch and cheer from the sidelines.

You teach them to drive and then watch them drive away for the first time and hold your breath until they return back home.

You teach and they learn. You show and they do.

Slowly, bit by bit they learn to become their own person. They start waking up to an alarm and no longer need your wake up song.

It’s bittersweet to watch them learn all the experiences, so much pride and yet sadness over the quickness of the years. Then maybe they are off to college. Or they find their own place. Or you hold their hand as they walk down the aisle. This is natural. This is what a snapshot of parenting looks like.

But what if 20 years later and the nights are still sleepless?

What if 20 years later and there are still diapers and all the body fluids.

What if she never learned to pick up that spoon and you still sit and feed her like she is 6 months old.

What if 20 years later and she still never said “mom.”

What if all your friends’ kids her age are off in college, some are even married or engaged. What if time stood still for your child while time sped along for everyone else. 

When did you become your child’s caregiver vs. their parent? Or are you always both? Is there really a line? 

If you find yourself parenting a child that has a disability or cognitive delay, or medical condition or any special circumstance that goes beyond the typical parenting realm you may find yourself finding balance with parenting vs caregiving

Parenting has a style. Parenting has an end game. Parenting, active parenting has a time limit.

Caregiving is a lifestyle. No one wants to talk about the end game in care taking. Caregiving really has no time limit.

There is a real hard line with the state between parenting and caregiving.

Once your child is 18 you have to file for guardianship. It is also in everyone’s best interest to make sure you have your final wishes clearly planned and stated because there is real concern if something happens to you and you don’t have these things managed.

But the line doesn’t seem as hard when it is your child.caregiver

If you are like me and struggle to know where you fit in balancing between parent and caregiver, it can be polarizing.

Even with the best of friends, most people can’t put themselves in your shoes. You can’t hop in the car and run errands. You can’t trust your 12 year old to be home alone for a few hours. You are always “on” and making sure your child’s needs are met… for what seems like forever.

Our daughter is now 20 years old and is fully dependent on us for everything. For 20 years.

Her needs are still very similar to an infant, yet she is the size of an average adult woman. Several of her daily needs I had to be medically trained to handle. Daily.

Yet I feel we are some of the lucky ones because we have found support for her care. Some families have no breaks.

I think most of us caregivers don’t give this much thought. It is a round the clock routine we are automatically dialed into but when I am able to take a step back and see our world from a different perspective, I feel a whole new sense of exhaustion. 

Along with the physical demands, the mental and emotional demands can be just as wearing.

There are so many specialists and medications, medical equipment, therapists, school, day programs, never knowing who you can trust with her being non verbal.

There are endless things to fill our minds with concern and real demands and needs that need met. Enough things to worry about that are the reason we lay awake at night when all we really need is some precious sleep. 

If you, my friend, are reading this and saying yes, I get it. I say, Hi. And I see you.

And maybe that doesn’t feel like a lot to the outside reader, but to you and me it means the world.

And this is the nugget of truth we hold to and know deep in our bones however blurry that line is, we never stop being first a parent and we know from the deepest part of us we will gladly be the one to make sure she is safe, healthy, well cared for until we are released from this duty. 


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