Adulthood

~ joannedesimone

My writing mind has been quiet for a long time. There are a good number of reasons why I have not placed myself in front of the computer every day. Part of me is hyper-focused on being in this moment. In five short months, Benjamin will graduate and he will fully transition into the world of adult disability services. I almost don’t want to attend his graduation. There’s no way I’m going to hold it together that day.

I have no idea what will come next. We’re signed up with an adult support coordination agency and I plan to lean on them heavily to steer us in the direction of continued daily, quality services.

So I will allow my mind to be quite about all the changes I’m not ready for because I don’t know how to explain it all to Benjamin. Explain that he won’t spend his days with Ms. Janet and all the lovely, young ladies in his classes who’ve fought for his attention for so many years. I don’t want to imagine him missing all the phenomenal therapists who’ve watched over him so carefully when I’m not there.

Benjamin, I am grateful that you have been so loved.

When I opened your door this morning, you were sleeping so peacefully. I put away the stuffed animal friends that surrounded you, took out your clothes, positioned your wheelchair, and set out your morning medications. You didn’t budge. I leaned in close to get a better look at your skin color and to listen and watch for your breathing.

I woke you with a whisper, “Happy Birthday Beauty Boy.”

I’ve had 21 years to love you, knowing another day was never guaranteed. Your daddy always said, “Ben’s not going anywhere.” I believe, deep in my heart, that you will be with us for a long time. But I know every parent in my lissencephaly support group wants to believe that. I’ve seen too many of them proven wrong. Their mourning is palpable.

Grandma asked me last night, “Where has the time gone?”

These past 21 years have flown, but they have been hard fought.

You are worth every ounce of fight I have ever exerted.

Actually, that’s not quite right.

You are worth so much more.

I love you.

I’ve always loved you.

Any grief I’ve had isn’t a reflection of who you are.

It’s always been based on my fear of how the world would perceive and treat you.

A fear of knowing I can’t make this world accessible enough.

But I will die trying to keep your corner of the world safe and filled with people who are willing to do the same.

Happy 21st birthday my Beauty Boy.

Thank you for being you.

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15 thoughts on “Adulthood”

  1. Happy Birthday Benjamin! My Cathleen turned 24 on Monday. So cheers to the January babies. Mom your words are the truth and we have survived and will survive. One moment, one hour, one day becomes a year.

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      1. I love the way you express yourself in your writing. I could read your articles/blogs all night. I love the way you advocate for Benjamin ..heā€™s so lucky to have you! I love your passion, dedication but mostly your unconditional love! I pray Benjamin celebrates another 21 plus birthdays..but for today ..Happy 21st Birthday Benjamin..you are truly a shining bright white light in this universe..keep smiling!

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  3. Your strength, courage, and determination remind me of the superhuman wellspring that is motherhood. Few of us are tested to dig as deeply, to reach toward the bottom of that well. Yet it is indeed bottomless. And filled with love.
    Happy Birthday to your Benjamin. Wishing him, and you, many more together šŸ™šŸ’—šŸŽ‚

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  4. Wow, I can totally hear your love and support for Benjamin shine through this post. I am so glad he has you for a Mom and you will continue to support him through all these changes. My own story (multiply-disabled 33-year-old myself) was unfortunately very different. Benjamin is so fortunate. Happy birthday to him!

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  5. Benjamin and Joanne

    thank you for being you.

    And that is the biggest and most embracingest thank you ever.

    Hope those Young Lady Therapists are reading it too.

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  6. A peerless expression of parental love like no other we’ve ever read. Your literary gift allows us a rare opportunity to share with you the heartfelt visceral love that uniquely binds mother and child body and soul. Thank you Joanne for the beauty of your sentiments and the words that bring those feelings so vividly to life for us so that we can genuinely celebrate them with you.

    Happy birthday Benjamin. Our love to you Joanne, John, Sebastian and the happy, smiling birthday boy . . . ahem, birthday man.

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