Love is Always Greater, Than Hard
My son Stalen is seven, autistic and non-speaking. He was diagnosed when he was 21 months old. He has a feeding tube and an ileostomy.
I’m sharing my hard here as a parent to a child with complex needs but I know that it is hardest of all on him. He lives it every single day.
It’s one word that brings about so many judgments.
It highlights the challenges, struggles and encompasses all the feelings. From the moment I stepped foot in the autism world with my son I realized that autism brought with it a level of hard that I had never known and never experienced.
Things that I thought were once hard failed in comparison to autism.
I quickly realized that this type of hard is only understood by experience.
Hard isn’t just a word to us. Hard is every day, sometimes hidden in small challenges or right in your face.
Hard is meltdowns and self injury.
Hard is behaviors and aggressions.
Hard is watching your child struggle every single day.
Hard is not being able to go out in the community or having limited outings.
Hard is comorbid conditions that exist alongside autism.
Hard is isolation
Hard is lack of sleep, pure and utter exhaustion.
Hard is being tired at your core, in your soul.
Hard is eloping.
Hard is guilt that you’re not doing enough for your child.
Hard is guilt over your other children that need you too.
Hard is having to fight for programs and services that your child needs.
Hard is having to fight for everything.
Hard is discrimination
Hard is being vulnerable.
Hard is having to trust others with the care of your loved one.
Hard is family and friends who don’t understand and distance themselves.
Hard is not being able to visit family, and celebrate special occasions.
Hard is lack of communication (that often results in frustration that results in self-injury).
I’m tired of defending the use of hard and seeing so many others having to do the same.
When parents and caregivers of individuals with complex needs use the word hard they immediately get judged.
Some people think that hard means that you don’t love your autistic family member.
I love my son more than anything in the world. He is my everything. In my eyes, the sun rises and sets on him.
Hard means it is not easy. Hard means that it’s difficult to see someone you love face so many challenges every day.
Hard does not impact the quantity of love, hope or faith.
Love is always greater than hard.
Hard does not mean that you are ready to quit.
Hard doesn’t equate to a burden.
Hard is just a word that describes many levels of difficulties.
A word we use to share, describe and validate struggles.
A word that encompasses all the tears, worries, fears, frustrations, and struggles without going into details.
So the next time you hear someone sharing their hard, don’t judge them, instead tell them that they are doing an amazing job.
Everyone deserves to be seen and heard even if we don’t understand and share all of their struggles.