My friend Kate of almost 20 years is having to make some very quick, very painful structural changes both to her life and to those of her sons, who both have special needs. If ever a time for a village to kick in, it's now. In her words:
No one wants to think of themselves as being in a vulnerable population. No one especially wants to think of their children as being life-long members of a vulnerable population. So your mind plays tricks to shield you. In my case, I always think that if this problem is resolved and this bill paid for, then we will be home free. That this is temporary. Somewhere off in rose-tinted-vague future I would have this handled. X + Y = Z Right?
I had tremendous resources growing up. It never occurred to be that if you worked hard enough and were scrappy that the desired outcome would eventually come around. Which is a good though...when you are dealing with an achievable goal. But you are shooting yourself in the foot when you are staring down at a disability.
The following is me checking my immense privilege and pride at the door and sharing the thing that keeps me up at night.
You aren't going to make it go away by working hard enough. You can turn it into something beautiful and unique. You can find community and support and love in the most surprising of places. You can be a blessing and be blessed. But you can't make it disappear like it was never there – like your kid will be able to do things that are considered “normal.”
There is a very good chance that C will never be able to live independently. I try not to look to far into the future because I can drive myself crazy with 20 mins of googling possible outcomes. Right now he's 9. I need to love and care and guide and advocate with everything I have for this 9 year in hope that the 18 year old he will become will have every advantage his mother could scrape together.
What we can do, day-by-day, is dependent on the set of challenges and strengths we are dealt in that moment, on that morning. What we wake up with, and what we have to work with, and what we have to overcome is different every day. What worked last week doesn't work this week. Problems that haven't popped up for years pop up with a vengeance. Things that were written in stone, handed down from the ancients, all of a sudden are up in the air.
The inverse is true too. All of the sudden this week C decided he was going to try new food. He hasn't tried new food in 2 years! For real. He eats 6 things. It's a daily struggle and constantly on my mind. On Sunday he decided he wanted to try a cheeseburger. Last night he ate Italian Lentil Soup at our Community gardening group. HEALTHY SOUP. WITH VEGETABLES HE HAS NEVER TOUCHED. I took pictures and I texted them to all my people. I cried. Soup was something beautiful and unique. These are our victories. These are the moments that see me through.
It saw me through this morning when C didn't want to go to school and he was throwing, punching and screaming for an hour. I left him screaming, punching and kicking in the school office with his mentor/teacher/my favorite person. Then cried in the car. These small things got me through his tortuous Achilles tendon lengthening surgery a year ago. I could list some major dig-deep-into-your-soul moments several times a year for each of his 9 years on this planet.
Then you fold in S's significant sensory and verbal challenges. S is a screamer. It is a holdover from his nonverbal days. He is chugging along nicely now with words, but he will still scream the house down. He is emotionally about 2.5 years old in a 6 year old body. C is sound sensitive and S is a sound machine. Once the dominoes start falling, you know it's about to go down.
Being vulnerable to me means being in a constant state of emergency -- playing whack-a-mole with huge issues. I am tough and I am scrappy. But I've burned though my internal and external resources in my 9 years of parenthood. I burned though my resources, and then a huge life crisis happens. What do you do then?
Well my friend Heidi is helping me ask for help. She is holding my hand and encouraging me even though it hurts to be a realist and to be vulnerable. I won't go into the details too much, because lawyers and feeling and kids are involved. But we are setting up shop from scratch. If you are really concerned, you can call me up or email me and I will reassure you. We are in a safe place. We are working on building up a new, hopeful normal. But we are also facing a huge deficit and an unknown future.
I estimate that at the bare minimum we will need about 5k to see us through to the New Year. That's mortgage, bills, birthdays and Christmas. (Probably a couple of Halloween costumes too.)
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