GOOD DAYS AND BAD DAYSOn my bad days I watch my son's friends move through the neighborhood as a pack - without him -and I'm sad. They are laughing, joking, throwing a ball around, hanging. He's back home hanging with Elmo.
On my good days I'm thankful for this bunch of boys that are kind to him. They walk to school with him each day. They humor his quirks and laugh at his jokes. I know that even if they did ask him to join them as they roam the neighborhood, he'd say no. He's happy with how he's spending his time, and does not feel left out.
On my bad days I worry about the future. I worry about high school. I worry about what comes after high school. I worry about growing too old and too tired to continue caring for him, but not trusting that anyone else can do it as well as me. I worry about what will happen to him when I'm no longer around to worry.
On my good days I see how every step of the path there have been angels. There have been people that didn't need to go out of their way to help, but did anyway. I trust that Rojo's life is not an accident and he's been graced with an abundance of guides, both physical and spiritual, and he will be fine. He will be better than fine, he will thrive.
On my bad days any illness he has makes me ill and any wellness makes me well. I allow myself to be fused.
On my good days I see that we are indeed, two separate people. I take back whatever emotions I've given him to hold, and give his back to him. I differentiate.
On my bad days I list all the things that need addressing, all the changes that need to be made, all the goals that need to be accomplished, and a panic rises within me and threatens to snuff out my very life force.
On my good days I list all the things we didn't think he'd ever do, and is doing, all the ways he's surprised and delighted us, all the ways we've been so richly blessed by him, and my heart is overcome with gratitude and appreciation.
On my bad days I eat, breathe and sleep special needs. It's all consuming and I hate it and myself for falling into that trap.
On my good days special needs takes its place in my life - a big place, but just a place, not my whole life. I am able to laugh, enjoy, and just be.
On my bad days I'm wracked with scarcity: there's not enough time, not enough money, not enough patience, not enough help, not enough.
On my good days I'm struck by the abundance all around me. All around him. All around.
23 comments:
My heart aches for you on your sad days and is so happy that there are good days to pull us through it all.
Oh, how I can relate. It's so like that. Every word. Every day. Thank you for describing it so perfectly, this flip-flopping, roller coaster life as a special needs parent.
Wow. I feel like a kindred spirit. These thoughts are mine -- almost all of them. Thank you for this phrase, especially: "I allow myself to be fused."
Carrie. I have no words in the face of your honest heart. But I have prayers for Grace to be given, and I have love for you. I hope you can feel it on your bad days...
Love. Lots of love.
:)
Thankfully now my son is older the good days out weigh the bad.
You have such clarity articulating the spectrum of perceptions of parenting. It's universal.
Parenting might take us on a narrow path, but we all deserve a wide birth. You included.
Take a break. sip something wonderful. breath in the abundance all around you... and know that you have everything you need. Rojo has everything he needs too, as he has chosen this path.
Oh honey, yes yes and yes - though I tend to swing through them all within the course of ANY given day.
I hope this will be one of the good ones.
Love
Hi Carrie,
I have been reading for a while and what you wrote about worrying about when you are too tired/old to care for him struck a chord with me. I have to NT little people in my life. I also have 2 brothers with Friedreich's Ataxia. This has left one confined to a wheelchair and the other slightly more mobile. One of them is married to a woman who is also in a wheelchair and who has aides at their home. The other one who is "more" disabled is currently living at my parent's home. My husband and I are building a house. My one brother who is unmarried and living at my parents is going to live with us. Our house will be accessible. He will be cared for. Things have a way of working out.
Blessings,
Emily
Stunning, Carrie. And so true.
I hate that it takes the bad to see the good. Wishing you many, many more good days than bad.
love.
Love to you, Carrie.
You pretty much echoed my own thoughts and feelings. It's just hard.
Love.
Love.
The contrast is what causes the expansion.
Things have a way of working out for Rojo. He will always be cared for and loved and so will you.
xo
An abundance of being with love.
Beautifully written reflection here.
I love the alternating paragraphs - it speaks to the Libra in me, the one who craves balance.
I ache with empathy for the bad days and the 'fixer' in me wants to find a way to push them farther and farther apart for you.
Most of all, I am impressed and awed by your self-awareness and resilience.
I love you.
Whew. that was a mouthful.
Sometimes you just want the seesaw to be still and balance as if by magic in the middle, hunh?
My prayer for you is for an abundance of good days and angels for Rojo.
i'm right there with you, with my own stack of rocks, finding a way to balance these good and bad days, good and bad moments...
Carrie, You have written the script eloquently for what we face as parents. Thank you for your honesty and courage to share. Love to you!
Carrie, thank you. It could be me saying this. I feel this, too. But you say what I could not put into words. So, I feel deep kinship with you.
LOVE.
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