Things you don’t realize

Like most mom’s I can remember just about all of my first child’s everything.  Especially when that first child is not a typical child.  When evaluations and professionals become involved *and* you knew something was wrong to begin with you tend to remember everything.  I remember Thomas didn’t walk until he was 15 months old, yet Alyssa walked right around 13 months.  I’m talking walking independently, steps if you will. 

When Thomas was around 13 years old I think, we were referred to a well known and respected neurologist for a consult.  I trusted the doctor the referral came from so I made the appointment and Tommy and I went all the way uptown NYC, like you can’t get any further uptown, Manhattan.  We even paid out of pocket to see this man.  Somehow Thomas’ history and “packet” was lost and I about lost it crying, I was also upset because Tommy took a day off work for this appointment.  The doctor agreed to see us anyway and I had to give Thomas’ whole history, his past 13 years of milestones, hospitalizations, medications (both trialed and in current use), other specialists verbally.  I could not believe I remembered literally everything. Even the doctor was impressed.  These days I don’t know if I could do it again but then again I don’t “have” to.  All this comes to mind because we have to begin the process of guardianship for our son.  Long story short, it means we will still be Thomas’ guardians even though technically he will be an adult when he turns 18 this year.  We are doing this to protect him so he won’t be a target for any unscrupulous people looking to take advantage of him.  It also is because Thomas will never be able to fully make responsible decisions for himself so Tommy and I will until we decide the state will make those decisions or one of his sisters many years from now.

You don’t think of these things when your special needs child is young.  All you want to do is get through the day or at least get through the hour depending on how your day is going.  I say I don’t miss when my kids were young and I don’t.  However I do miss *my* innocence, my hoping that Thomas was going to get better or we would find the magic combination of meds to contain out of control behaviors.   That very important neurologist put all that hope to rest when he told us Thomas was brain damaged and would never get “better”, nor would he get worse.  But… through it all he’s still my Thomas and still will be when we assume guardianship for him.

It’s been 2 years since Thomas has been hospitalized and we realized he couldn’t continue to live at home anymore. 2 years of adjusting to a new normal, me going on meds and in therapy.  He’ll have been in residential 2 years this coming summer when he turns 18.  These upcoming milestones aren’t the ones we thought we’d be making 18 years ago or 16 years ago when Thomas took those first steps. 

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