In six months, Micah will be eighteen.
In six months, he will be able to make important life decisions without our supervision.
In six months, he could leave home and try to live without our protection.
In six months, he could decide he wants to manage his diabetes care by himself.
In six months, he could meet someone who might ask him to marry. He could say yes.
And, legally, there would be nothing we could do.
Unless–
We petition for guardianship.
“But isn’t it enough that you are his parents?” you ask. Yes, but the fact that we’ve raised him, protected him, provided for him, loved him—none of this will be enough when he reaches adulthood.
Micah has made wonderful progress throughout his growing up years. But not enough that he can manage his medical care, his financial care, and so many other aspects of his life all by himself. There is a lot that goes into diabetes care from ordering supplies, to changing CGM sensors and insulin pods, to counting carbs and putting the right number into the insulin pump. Although he has learned a lot about how to read his blood sugar numbers and what to do when he’s high or low, he still needs our help. It can be a matter of life and death. How scary to think that right would be taken away from us.
Sometimes I think it’s unfair that we must jump through more hoops, go through more red tape. I know we’re not the only ones. I am so grateful that I have good friends who also have teens with special needs. We are all in this together—this march toward our kids’ eighteenth birthdays. It is helpful and comforting to talk about the process, ask each other questions, come up with ideas for what our young adults might do in the not-so-distant future.
“Will you always have to be Micah’s guardians?” you ask. I wish I knew. Every year he matures, every year he becomes more capable, makes progress in various life skills. This summer, along with theater activities, he has his first part-time job, and he is doing so well following directions and completing the tasks laid out for him.
Maybe one day, he’ll be able to live on his own, perhaps with others or with a life partner. Far be it for me to say he will never be able to get around a city by himself, plan his day, shop, attend events, play a big part in managing his daily life. I think it is possible, or, at least, that he will be able to more than I ever imagined.
We’re told that in five years, we can revisit whether Micah will still need our guardianship.
But for now, it is necessary. It is lifesaving.
It is the next most important thing we must do.
Well described Deb! God’s put Micah right where he wants him!
Thanks, Pete. Safe travels!
It’s been fun watching Micah mature into such a nice young man over the past several years. He is so lucky to have wonderful parents that love and care about him so much! ❤️ We never know what’s ahead for them but we do know one thing, they are loved! Wishing all of you guidance in the years ahead.
Thanks so much, Mary. I know you understand this journey well, and I so appreciate your encouragement. Micah was blessed to have you as one of his helpers in middle school. I’m glad I still get to visit with you from time to time!
Deb,
This is such an important and well-written post! It truly highlights the complex realities parents face as their children with special needs approach adulthood. Your dedication to Micah’s well-being and future is inspiring. Guardianship isn’t just a legal step; it’s a crucial part of ensuring he receives the care and support he needs to thrive. The transition to adulthood can be daunting, but with your and Todd’s guidance, Micah will continue to make remarkable progress. He skills and abilities continue to surprise us! Thank you for sharing your journey and shedding light on this critical issue. Your story will undoubtedly resonate with many families in similar situations.
Micah’s Aunt and part of his tribe…
Heidi
Thank you, Heidi! That means a lot! Yes–you are an important part of his tribe! He is excited for your visit to the lake this week! 🙂
I am very moved by your description of what is essential and proper to be a loving parent of a special needs child. Micha is so fortunate to have been adopted by you, Deb and Todd. I often wonder one can best make a meaningful contribution to society. You are certainly doing so by sharing your journey with Micha. You should write a book called, “Life with Micah”. It would probably be a New York Times best seller.
Hi Curtis! Thanks for your wonderful and encouraging words. Maybe someday a book will emerge–a collection of essays perhaps. Hope you and Theresa are having a good summer!