Saturday, April 15, 2017

Where Have I Been?

Unless you live in my immediate community, you probably haven't been seeing much of me.  It struck me last night how out-of-touch I have become with everyone who I am not forced to see through my childrens' schedules. I feel like I owe many of you an explanation, so please excuse that it is coming in mass-communication format.

The truth of the matter is two-fold.  First, of course: I am busy.  I think I am busier than most people, although I don't know the intricacies of anyone's life and it's also not a competition.  I'm just busy.  I go from before sun up to long after sun down.  I average 5 hours of sleep a night. I average over 100 miles in the car a week (and the past few weeks, significantly more.  Last week I drove to NYC on Wednesday and Wilkes-Barre on Thursday). If I don't put a note in my calendar with an alert, it's not happening, even if "it" is brushing my teeth.  I constantly have a million balls in the air and a million people I have responsibilities towards and the order of necessity is:

Things my children need
Things my husband needs
Things my parents need
Things my clients need
Things my friends need
Things I need

So you see where I, and my personal relationships, fall on this list.  But this isn't really new.  I've been busy for awhile.  Yes, I have added another child, my business has been very active, I now have 3 kids in school with all the activities that this encompasses.  But my being busy has been a mantra for many years now.

The second issue, and the more impacting, is that I am TIRED.  And yes, many of you know about Wesley's sleep struggles, but it is not just the lack of sleep (and terrible, broken sleep).  I am tired to my SOUL.  I am nearing 40 and my life has not turned out to resemble the image of myself that I have developed through a lifetime.  Anabelle's diagnosis was devastating, but Wesley's?  Wesley's is terrifying.  Autism is a battleground.  Anabelle is so limited that she is her own protection.  She needs a ton of care, but she doesn't need a ton of parenting.  Wes needs all of Anabelle's care combined with all of Elyse's parenting.  I have to protect him from himself.  I am constantly pulling him out of the road, off the back of furniture, yanking lollipops out of his mouth as he tries to run with them, grabbing his head before he slams it on the floor in a tantrum,  In the process, I often get injured.  Anabelle can't speak or understand language, but then I don't need to tell her much.  Wes needs constant instruction all day long to function as a human being, and I never truly know what is getting through to him.  I bought all the supplies to try to potty-train him, but since he doesn't tell me when he has to go, I haven't even been able to figure out how to get started.  He currently refuses to let me wash his hair because he doesn't understand when I tell him to lean his head back, so he gets a mouthful of water and freaks out. One day he'll eat nothing but chicken nuggets, the next day he refuses them, but can't tell me what he really wants, so I make three different dinners to try to get him to eat something.  And don't tell me, "He'll eat eventually, he won't starve", because this is not the case with him, because AUTISM.  Every minute of my day is a puzzle to figure out, a ball of twine to unravel and it is completely exhausting.

And the scariest thing is that I have no idea if it will get better.  Will he talk?  Will he be able to function independently? Will he be one of those autistic adults who is violent with themselves and others? Will he need care after I am no longer around to provide it?  Have a ruined my only typical child's life by creating these burdens?  This is not the reason I had children.  No one plans a family saying, "I hope they need all my attention until the day I die."  I was ready to dedicate 18 or so years to full-time parenting each child, and then I expected them to start spreading wings and need me significantly less.  I have no idea if I will ever reclaim myself, if there will be any more time to accomplish my own life goals.

There is no quiet in my head.  I love you, my friends, I think about you all the time, but I just don't have the energy.  I can't even care for myself, how can I nurture relationships?  I don't fix my hair, I don't wear makeup, and half the time I get to the afternoon before I realize I never got dressed.  I've taken to sleeping in clothing that is, at least, acceptable in public, because I will probably end up outside in it.  I look like a nobody.  People look right through me.  I am a moth, not a butterfly.  I attract no attention unless I am a nuisance.

I am trying.  I try desperately hard to keep moving forward, to scratch out moments of happiness, to project positivity that I usually don't feel.  But what I recognize has desperately fallen to the wayside is the people who were important to me that were outside my immediate geographic circle.  I just want you to understand, I DID NOT STOP CARING. I just ran out of energy.  I am trying to get it back.  It would help if you reached out to me.  Put yourself in front of my face. If our relationship matters to you, help me preserve it, I need you to carry more of the weight while I try to figure my life out. If the time comes when I get balanced and emerge from this cycle of mere survival, I'd love to see you still there on the other side.



  1. NEVER NEVER APOLOGIZE! We ALL know what kind of person u r and we LOVE you and wish we could help. ALWAYS remember we are always here for YOU. Daily, weekly, montly....whatever! LOVE U MY FRIEND!

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  3. Beautiful. Heartwrenching. HONEST. I am so glad that we met, connected, and that I have you in my life.
    I feel for you, and wish I could help you more.
    YOU ARE, truly, an amazing, strong and beautiful butterfly to me!! HUGS

  4. Hello Kate
    Good on you for putting this out there.
    I am a Speech Pathologist working in Adelaide. 25 years of work, and I am a mum too. I know what the life is like for the main carer of children with
    significant DD, CP or ASD. Make sure you find something you love to do everyday and see people who you can smile and laugh. You only have to be goo enough, not a super mum! Nurture your partner and family. You will find new
    friends in the places you take your children too.
    Take care, Kate the Speech Pathologist, Adelaide

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