Hope
written by Lori Rivera
“Hope” is probably the most necessary word in a special needs mom’s vocabulary. Well, that and a well-used F bomb. Honestly, they are probably of equal value in any mother’s world… special needs or not. In the beginning of your special needs journey, you will hope it’s just a bad dream.
You hope that there was a misdiagnosis.
You will hope for help, a cure, someone to walk you through such overwhelming information.
You will hope that if you must walk this path that it is not as scary as it feels in that moment.
You will hope that your child is loved beyond your arms.
You will hope that your child is treated with respect, dignity, kindness and inclusiveness.
You will hope that you can be a good parent to a child with needs you haven’t wrapped your head around yet.
You will hope that their siblings forgive you when you are drained of energy from worrying every moment you are awake and the moments that keep you awake through the night.
You hope that your relationship with your spouse can survive the stress of the day-to-day obstacles.
You hope for information, new ideas, new drug protocols, new therapies, new friends who understand.
You hope that your old friends walk beside you in your new reality.
You hope your child will be invited to birthday parties.
You hope they don’t have an adverse reaction to a new drug.
You hope that people stop giving you platitudes.
You hope you never hear “Wow, you are so strong. I couldn’t do it.” ever again.
You hope you never hear someone make fun of your child.
You hope that the doctors listen to you.
You hope that their teachers will advocate for them when you aren’t there.
You hope that the hospital stay is short this time.
You hope your child comes home this time.
You hope you can have a hot shower and ten minutes alone to put down the load you carry.
You hope your child is not pitied.
You hope that people see the magic that they are.
You hope that your love is enough to carry them through the day.
You hope that they are never teased.
You hope you don’t have to beg to be listened too.
You hope.
You hope.
You hope.
You endlessly hope for your children.
I am someone who watched her parents hope that their child would be cared for when they were sick or gone. I am a child whose mother is gone and I have stepped into the role of caregiver and mother to my brother. I hope that my mom knows the hopes she had live through me.
Her hopes were seen.
Her life upended on March 15, 1982. Her life, the whole family’s life was restructured the day my brother was born. Everything changed. But hope never faded.
Hope for better days.
Hope for small victories.
Hopes for a family that would be stronger together.
Hope that this incredible child knows how special they are.
Because in the end what matters is the hope that carries us through the dark days and into the light again.
And whether that hope shines brightly or fades to a glimmer, as long as we continue to hope, we continue to win the battles that arise in their journeys.
Hope is a dragon slayer to us all.
Hope is life changing.
Whatever journey you are on, whatever mountains you must climb, no matter how many times life knocks you on your tush—hold onto hope. And maybe scream “Fuck!” the whole time you hope… but never, never give up hope.
Lori Rivera is a southern California native. She is mom to her three children, Noah, Bailey and August. She is also the 24/7 caregiver for her brother, Shawn. Shawn is 42, with severe cerebral palsy and is medically fragile. Lori was recently an essay contributor for Becoming Brave Together. Lori is incredibly grateful to be a part of the brave community.
