By: Christene Jackson Kamberis
Next month, Jack will turn 24.
I've been changing diapers, bathing, dressing, cooking for and physically feeding another human for at least 24 years.
I've been on high alert and hyper vigilant for 24 years.
I've been a master researcher and advocate for 24 years.
I've changed careers and reinvented myself more times than I can count, all in the name of adjusting to meet his needs.
24 years of medication management and doctor/therapist appointments.
24 years of haircuts, nail clippings, laundry and shopping for clothes and shoes (he hates shopping!).
24 years of being a constant entertainer.
24 years of trying to be one step ahead of him to make sure he's safe.
24 years of adjusting our entire life, schedule and activities to meet his needs.
24 years of building and losing relationships, missed parties and events. (This always hits me when I have to say no to a party or an invite that I really want to partake in.)
24 years of just plain being "on".
Truth be told, I'm drained... mentally, physically and emotionally. I won't show him that.
Jack deserves to have a strong, happy, got it together mom. And that's what he gets... {almost} every single day. Because regardless of the challenges of the day, tomorrow comes with the promise of a better day. He deserves my best and regardless of how exhausted I am, I try to give him that.
I feel like our story is similar to many out there. This is a story I see repeated in my feed from other parents of children with special needs. I hear it in support groups. I see the exhaustion in parent's faces.
We can't get sick. We can't not work, but also have a hard time figuring out how to work. We can't give up. We sure as hell can't die.
This path may be long, twisty and filled with ups and downs, but I would 100% do it all over again.
Why?
Because I’ve also had:
24 years of watching miracles take place. 24 years of watching a beautiful bond form with his incredible sister. So blessed!
24 years of learning what unconditional love really is.
24 years of busting through the expectations of all the professionals.
24 years of watching the world through a unique perspective.
24 years of celebrating small wins.
24 years of watching him navigate a world that presents so many challenges.
24 years of learning how to become a better parent.
24 years of gratitude for every milestone, every achievement and every single day.
Being the parent of a child with special needs requires a lot of grit, no doubt. But, it’s the laughter in the unexpected, the joy in the middle of the chaos and the spirit found in the midst of the battle that keeps us going.
And sometimes along this journey, we find special places and special people that stick around and become family. Places like Matthias and our Matthias friends. In Matthias, we have found so much. Safety, inclusion, respect and a family like we never imagined ever finding. People who understand and welcome all that comes with this life. People who are willing to get in the trenches and keep this dream alive.
We, along with so many families, are so very grateful. And we are so excited for what’s to come!
We also walk in your shoes. Our son is 24 as well. I wish I could feel as blessed as you. We love our son, but we’re exhausted and becoming resentful of all the missed events and vacations we’ can’t take.. We’re also disappointed in the lack of support and virtually never having any respite. Other people don’t want to take care of hard cases. Maybe it’s just a phase we’re going through, but it seems as if there is no good care out there for our loved ones and parents will only last for a finite number of years. we worry for the future when we’re gone.
I walk in your shoes daily as does my husband and it’s wonderful to have a break and time for yourself. We just had 2 weeks away thanks to our oldest son for stepping in to care for his brother. I didn’t realize how beneficial it was to take a break and focus on me and have time alone with my husband. We had not been away from care giving in 5 years and prior to that 10 years. It is good to have time away to rejuvenate your soul replenish your energy. I wish we parents all could have an opportunity once a year to do the same.