What Tuberous Sclerosis Complex taught me about love

I had to go in my daughter’s room today. I found myself on my knees in tears. She is 22. She is moving out soon to shared living. It is a really great opportunity for her in what’s turned out to by quite a serendipitous match.  It is still so hard to let go. Walking into her room, I see the evidence of a 22 year old woman in about a 13 year old girl’s mind with schisms of brilliance, intertwined with many tiring days of multiple interruptions and continual mind grinding frustration on both our parts at our mutual lack of ability to make anything stick within a reasonable time frame, so she can forge her way more independently.

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It’s been tough to stay hopeful. It’s not her fault.  And maybe that’s just our history, our history influencing my vision of her.  My ex mother in law did say it would be a tough go. That was when she was about 11 months. My father, who was losing his mind at the time, even saw it, that she wouldn’t listen to me. At all. As her mother and truest believer in my daughter, I still believe. She’s been my raison d’etre and now I am handing her over, just like it almost never happened and they’re starting at square one with her.  The shared living match.  I’ve come to accept that she is who she is as much as she is carved from my heart of hearts, she has also been tough to care for, and I’m telling you, this past year of working with her on following rules, has been a humdinger.

But I digress.  I had to go into her room to look for hazards, a frequent part of a routine started because of multiple incidents of burns from curling irons, nail polish catastrophes. Fairly recently, we were in her room and discovered that she’d taken some stimulants that are prescribed for her brother.  It scared me a bit. She had never done anything that deliberate and that extreme. I came to understand, that it was mostly just so she could stay up late at night. It triggered memories of my past addict proclivities, and was a somewhat horrifying review of my own past behavior, and all it’s inherent harms and damages.  Ouch.

She loves to stay up late at night, and party.  Plain and simple. She gives her all every day and by about 8pm she is done.  D.O.N.E. But, she also likes to be alone in her room and do the kinds of things she enjoys and which comfort her.  This may involve high pitched squealing, singing, rocking, making videos, taking pictures, printing things on printer, if possible, maybe even cooking and showering. Boundary less.  I don’t know.  Anyway, she wanted more.  More time to have her own kind of fun, so she grabbed the pills

The pill escapade actually turned out to be a good thing because it got her on the escalated radar of the DDS and shared living seems to be the path.  While initially quite reticent, I have come to see that it might work. It’s a letting go on many different levels and I am happy for her and I hope for the best.  She has come so far from that little girl who had to spend 3 hrs a day, as a 3 year old in ABA therapy.  She was locked in a chair, working with a therapist extraordinaire, that cracked her code and had her conceding to finally use the English language. By then, she’d already made up her own language that involved over 100 words combined with the point and pull method of communication.

Her TSC diagnosis was the linchpin for the entire breakdown and recovery of our family’s hopes and dreams, shattered and repaired repeatedly. I am grateful for all the lessons of tough love TSC has taught,  painful, unfair, ugly as hell. We could not have survived had we not found new lenses daily, to see the gifts of this ongoing daily struggle dealing with what this disease represents and reflects so poignantly.  That with which our own country and the world at large is faced.

We must not turn away, even on the darkest days, when everything seems black. We must sit in our anger, pain and discomfort for long enough to understand that we have the power, even if only to scream ”help” at the top of our lungs, fall to our knees in despair and confusion, and accept that this too shall pass, light will come. And it has.

So off she goes, with much fear and trepidation, I surrender her to the path, whatever path that may be for her.  We have tried our best as mother and daughter, as mother and daughter’s do, and a deep love will always connect us. As tears stream down my face, and I think of how quiet it will be when she leaves, I know the time has come.  Onward sweet Mary Ellen, it’s your turn!  Go live. I love you.

About Jill M. Woodworth

Mother of 5. Reigning in the chaos of life with my self expressive blogs. Passionate about a new idea every day. Trying find an adequate platform. Embracing life on a day to day basis and raising my children, 3 with TSC. I am an avid runner, and use running and meditation daily to cope with life. Right now, I am helping tsalliance.org recruit Marine Corp Marathon runners for Team TSC. Go Team! Find a cure!
This entry was posted in #IAMTSC, autism spectrum disorder, epilepsy, Infantile Spasms, medical conditions, parenting, special needs, tuberous sclerosis complex. Bookmark the permalink.

One Response to What Tuberous Sclerosis Complex taught me about love

  1. Pingback: TeamTSC & The Marine Corp Marathon | True grit motherhood.

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