Wow - wow - wow!!! I can hardly believe we're living a completely different reality. Amazed, grateful, humbled, stunned . . .
Lily is a different kid, so much more like her exhuberant self, but so much more mature. She's sweet again. Kind to her brother, even when he resists, is unkind to her. Fun and loving with me. Funny, beautiful, smart, aware. It's breathtaking.
She's getting great grades and getting along with her peers.
She's proud of herself.
And I'm so proud of her. So humbled by her courage and honesty. She inspires me.
Our world is changing so fast now. We can play games together as a family. We watch tv or movies together. We laugh and play. We get through our conflicts with much less trauma.
Lily is making tremendous efforts with her brother. And he's holding on to a sense of bitterness over how hard things were. In family therapy, we talked about how he lost her, his closest sibling, when things got bad for her. She targeted him for so much of her frustration. And he loves her. She's getting it - seeing him as the loving kid he really is. And she's loving him back again.
But part two of all that is that he not only lost his sister in her illness, he lost his mother. I was here, but not. Lily needed so much, 24 hours a day. I was terrified. I attended to my youngest son, but in such a limited way. I knew it wasn't fair, but could only pray that he'd be OK until things somehow changed. He behaved perfectly. Got straight As at school. Had perfect attendance, kept his room spotless.
And now he doesn't have to. He's struggling more in school, spends too much time at the computer. He's behind on his assignments, his room needs a good cleaning, and his behavior can be difficult. Yet he still can be so loving, cuddly, sweet. It's quite a combination.
The other day he wanted to stay home from school. We had a tough time, I made him go, even though he cried and yelled. I told him I understood it was hard to face his teachers with missing work, but it was important to do it, that I knew he'd be fine. So he went, and he managed, and next time it won't be quite so hard.
And after I tucked him in that night - (I know - thirteen, but it gives us time together!) I started to walk away, and he stopped me. He said, "Mom, thank you for making me go to school today."
So heartbreaking. He's incredible, And he was thanking me for seeing him, for being there, being a mom, for doing what he's been needing all along.
I knew he needed me. If I could go back and figure out how to keep Lily safe and be a better mom to my son, oh - I so would! But I didn't know how to then. I still don't know what I could have done differently. But I'm so profoundly grateful I can be there now. That it's not too late. We're so incredibly fortunate that he's resilient. That he's forgiving and has a really good, kind heart.
Which brings me full circle. Life is amazing right now. I dind't know if we'd ever be this happy again. Lily is now off not only the risperidone, but the topomax as well. She's not tapping when she hears "ck" words. She's easing up on her diet restrictions. She tolerates being around others better. She even sat with us when we all had ribs on Mother's Day! These are behaviors that caused considerable distress before. Again - wow!
So Lily is recovering beautifully, from being misdiagnosed and over medicated, from her own problematic thoughts and fears, from being a young woman in a society that beats young women down.
Her brother is teetering on the edge of trust and hope, and I know we can nudge him over. He is loved - by me, by Lily, by anyone who knows him. I'm getting a do over, and I'm not going to let him fall through the cracks.
I'm graduating from college next week. Finally. I got to finish - and I'm so grateful, truly grateful, for the chance to complete something 30 plus years in the making. No more homework, no more disappointment that I didn't finish something so fundamental to who I am. I'd love to go to grad school, but what I really want is to just be a mom for awhile. To focus on the kids, and juggle work and home, without the trauma and drama of the last several years.
So happy. We are just so happy.
You totally made me tear up with that comment from your 13yo! And I LOVE that you still tuck him in! That is one of my favorite ages.
ReplyDeleteSO glad things are better for Lily. Such good news!
What a great place to be, I'm so happy for your family.I can relate to your feeling about your son, I feel the same about my other boys too, I wish I could have parented them better when my son was at his worst, but we can only do what we can. It is hard to let go of the feelings tough...
ReplyDeleteHi Lily
ReplyDeleteMy name is Jenna, you are a brave, courageous fighter and an inspiration. You are full of courage, strength and determination. Your brother loves you so much, he is such a caring and kind hearted indvidual. Your mom is also a wonderful mom, to have her, stand by you, care for you, love you uncondtionally and never give up on your or your challenges, that is one awesome mom you have.
I was born with a rare life threatening disease, and have 14 other medical conditions, and developmental delays. I suffer from Bipolar post dramatic stress syndrome, and major anxiety.
I wrote this poem
Each of us are Special
Each of us different,
No one is the same
Each of are us are unique in our own way,
Those of us who have challenges, we smile through our day.
It doesen't matter what other's say
we are special anyway.
What is forty feet and sings? the school chior
http://www.miraclechamp.webs.com