I woke up this morning, and I felt tired. It wasn’t the tired where I couldn’t open my eyes or move my body, but this was an emotional exhaustion. My brain felt like it was zipping and zapping with no place to go and all the neurons were firing in the wrong places. The exhaustion that rips through me isn’t a physical exhaustion. Every day I can wake up and put one foot in front of the other, and I can mindlessly move from one task to the next. It is mental exhaustion that has me so overloaded with what I need to do next for my son.
What doctor do I need to call?
What prescription needs to be ordered?
What form needs to be mailed and completed for the state or county?
What assessment needs to be sent to his therapists or psychologists?
What appeal do I need to complete for insurance?
Who do I need to contact about the educational issues he is facing?
Can an attorney help me get the resources I need?
The questions go on and on through my brain, and the items on my to-do list never seem to be checked off. As I sit here there are emails I need to send, documents I need to complete, medications I need to order, and cares that need to be done for my child. It’s a never ending sea of chaos that fills each day from one to the next, and the needs and tasks increase exponentially every single day. I wake up feeling swallowed by the fact that no matter what I do that day I will still be behind. In addition to his needs, there are my own needs and those of my husband. Dishes pile up in the sink and overflow on to the counter, and there are stacks of laundry that are folded but not put away. Dinner needs to be made, and shopping needs to be done for the week. Every single day I wake up drowning in the endless tasks of being a mother of a child that is chronically ill and autistic.
I will be the first to admit that after almost five years in the “Special Needs Mom” Club, I feel neither special or like a mom. My day can be surmised in a series of administrative tasks designed to coordinate the therapy, doctors appointments, medical equipment, medications, and educational needs of my child. There is rarely time just to be a mother. In fact, I can’t remember the last time I sat down with my child to read and enjoy the moment. There is always something left undone, or I am distracted by the massive mess on the floor created during a meltdown by my child. There are days I would clone myself into four people, and I would still not have the time or energy to get everything completed.
There are the endless tasks given to me every time we go to therapy. We are always working on fine motor skills, behavior modification, sensory integration, and helping to foster a sense of independence and confidence in my child. Those tasks are often interrupted by a medical emergency, and I have to swap my therapist hat for my nursing gown. Medication needs to be given, a g-tube needs to be tended to, or vitals need to be completed in order ensure he is medically stable. There is never any time during the day for my thoughts, my emotions or my dreams. In the midst of it all, I am reminded that everything we do on a daily basis is a fight.
A fight for services.
A fight for educational accommodations.
A fight for medical interventions and medications.
A fight for therapy.
A fight to learn new skills.
A fight to maintain skills and not regress.
A fight to stay calm and patient in the midst of the chaos.
A fight to have grace.
A fight to be forgiving.
A fight to love me.
I am tired of having to fight for every single aspect of our lives. For one millisecond, I want things to come easy for our family. I want things to come easy for the families of my friends caring for their children with special needs. I want to feel successful, pampered and just like everyone else. For one single moment, I want to feel normal. However, I know none of this is ever going to be possible. My son will never be neuro-typical, and his diseases have no cures. We will be sitting in this abyss of uncertainty with no known prognosis for his entire life. Our dreams and hopes for him will not look like those of the rest of society, and I am exhausted playing the comparison game of what my child can’t do to what his same aged peers can.
Parents of children with special needs will never, ever tell you they are exhausted. We will never admit to you that we are so emotionally drained that there are days we simply do not know how we are going to get out of bed. Some days there are moments we can’t even sit without tears falling down our cheeks. We will never admit to you that there are days we wish it didn’t have to be a fight or to be this hard. You will tell us over and over we are strong, and inside we will be screaming that this fight is slowly killing our inner peace. You will never see our tears, our anger or the despair on our faces when we scroll through Facebook and see what typical children are accomplishing each and every day. We will never admit to you that it’s hard not to feel jealous, angry, or frustrated that our children have to work so much harder to reach the same goals. It is even harder for us to admit that some of our children will never meet any of those goals. You will never know the pain and agony we face each and every day when we imagine the worst case scenarios of burying our children, not having grandchildren, and growing into old age without our child beside us. We will never admit any of this to you because we don’t want you to know how hard it is to live in this place.
What we will admit to you is that today we woke up and did what we were supposed to do for our child. We went to therapy, filled out forms, called doctors, scheduled appointments, implemented therapy, and organized our child’s medical closet. We will share with you the small goals we have accomplished or the fact that we made it through a day without a meltdown. We will share the rose-colored glasses version of our lives because unmasking the darkest thoughts of our lives makes us fear you will run away. It’s hard for people to be in our lives because for most people it’s hard to watch a child and family suffer. For many, it is easier to hear the cliff notes version and pray the family is ok. It’s harder to the friends and families of parents of special needs children to actually show up, listen, and help.
If you are a friend or family member to a parent of a special needs child, please, please go out of your way to let the parent know they can be vulnerable and messy with you. Encourage them to dive in and share their emotions with you. All these parents want is one person to listen to them, hug them, and tell them it’s going to be ok. Most of us don’t even care if you are lying that it will be ok, but to know we have someone willing to let us get into the nitty gritty of our feelings will make us feel so much less alone. Parenting children with special needs is incredibly isolating, and all we want are friends that will be there for us. We want to be there for you too, but we know we can’t be unless you allow us to be honest with you about how exhausted we feel. Please be that friend that goes deeper, loves harder and is braver and unafraid. We will be the best friend you ever had – if you just give us the chance.
Tell us what you won’t share with your friends and family about your journey in the special need world. Comment Below.