I know you are tired, no that’s a lie, you are more than just tired, you are freaking exhausted. Your head is heavy, arms are fatigued, and the thought of doing all of this for one more day is daunting. You keep on going, even when you feel like everything around you is falling apart.
I know you feel guilty about the fact that the laundry isn’t done, there hasn’t been a homemade meal made in days or maybe weeks, and the clutter in your house is making you feel like you may be a participant on the TV show Hoarders.
There are dishes in the sink, garbage might be piling up, and you feel like you are somehow failing everyone around you. Your husband might not understand everything you do every day, and you might feel like you are failing him or your partner. The truth is you are not failing anyone at all.
Every single day your priorities aren’t that of a typical stay at home mom.
Why should you feel like a failure at all?
You should not!
You woke up today, and you put your own needs and wants aside. As you rose from your slumber, your feet hit the floor, and you dressed in your invisible superhero cape. Then you took fast-paced steps to the medical cabinet to retrieve the necessary equipment and medicine for your precious child. Breakfast might have meant through an IV line, feeding pump, or 60 ml syringe for your child, but you got all of it together so they could start their day.
As you whisked them together, got them dressed, and you made sure they had all their attachments, bags, syringes, and equipment they need to get out of the door.
I know you had miles to drive to that appointment, and most of your days feel like they are spent in waiting rooms or your car. The list of appointments you have to make in a week can be daunting for anyone, but it’s just a part of your life. Doctors offices, therapy clinics, and outpatient treatment centers are your standard. You have spent hours of your life waiting while your child is learning, rehabbing, or finding new skills. For some parents, this would feel impossible and mind-numbing, but you know this is exactly what is needed to help your child thrive.
In the midst of all of your running around, you still have dozens of phone calls to make. Medications need to be filled, appeals with insurance need to be filed, and emails to providers need to be sent. Just as you feel like you have conquered one task, you walk out to the mail, and there is something new that needs to be done. The state, the county, and the school might be requesting more documentation. There are forms to complete for your upcoming IEP, and you have spent hours trying to find an advocate to help your child’s education needs to be met.
On your hardest days, it feels like you are fighting for everything for your child. Providers are pushing back. The county is being difficult. Your child’s social security check was withheld. The school called, and you found out your child’s para made a colossal mistake. The insurance company denied your child’s newest equipment, medication, or therapy that was ordered. Of course, that means, even more, fighting with doctors and clinics to provide all the supporting documentation. Hours of your day will be spent listening to hold music as you are bounced around from person to person.
Your hands clutch your phone when all you want to do is throw the phone across the room.
Then there are your child’s hardest days. They aren’t feeling well, or their behavior seems to be out of control. Feeling absolutely powerless to help them, you try everything you can to get them to communicate what is going on. Frequently this means you are rushing them together, throwing it all in the car, and going to the Emergency Room. Hours will be spent waiting for a room, and then even more hours as you wait for the hospital admission. You already know it’s going to be another horrible night of sleep, and your back is already aching thinking about sleeping in that crappy hospital chair next to their bed.
Days, weeks, or even months can be spent sitting next to your child at their hospital bedside. The outside world seems to fade away completely, and you lose touch with reality. Reality becomes the hums of machines, beeps of alarms, and slamming of doors as providers and nurses come in and out of the room. Sleep is always interrupted as nurses do their nightly vital checks.
You laugh at yourself thinking to yourself that hospitals are supposed to be for rest and healing, but you know your child would heal faster at home. Most days you can’t leave your child alone with the staff because no one knows your child’s symptoms better than you. There is no other person in the hospital more equipped to manage their care than you.
I know you are tired, and I know you are worried about all the things that aren’t getting done at home. You are feeling guilty about your other children that aren’t getting the same attention, and you feel like you are stretched thin.
Just remember you are DOING ENOUGH.
Your worth as a parent is not measured in how many loads of laundry you do, meals you make, or crafts you make with your children. Your value is not defined by the clutter on the tables or the list of to-dos you haven’t completed. Your worth isn’t contingent on the fact that you are the best wife, friend, sister, or daughter.
You are a warrior mom that has to do things many mothers never have to consider. Of course, you are tired. Of course, the laundry isn’t folded, and it’s no wonder there hasn’t been a hot meal in weeks.
You have been BUSY in your own right caring for your child. Stop feeling guilty. Stop feeling like you have to do it all.
Don’t forget to ask for help, and somewhere in this madness try to find a few minutes for yourself.
You are a parent of a child with special needs, and you are doing everything you can with every single day.
You are enough.
You do enough.
And you are worth it!
Another Mom fighting the good fight