Tuesday, December 05, 2017

Don't Let it Happen

I had a treat this past week, a gift of time, a luxury to be away for a few days and recharge my batteries.  Dominick and I are working hard at being intentional about getting me away from my "work place" 3-4 times a year for a decent respite. We haven't been quite as successful as that, but we are working our way toward it.

And why do I need "respite"?    Well, we are also intentionally using the word "respite" because it implies something very different than "vacation", and it is far more appropriate. Why, after having the gift of being home all day every day do I need a break or mini-vacation? I mean, isn't this all a cake walk?

Uh...no...though I used to think exactly that and argued against it because I thought the same.

I refused to see myself as a "caretaker", after all, I am a mom, right?

Yes, I am that, but also a caretaker to people who don't have gray hair, who aren't using walkers and canes, who don't need to wear Depends.  And that is why it has been easy for me to dismiss it.

It doesn't look the same as if I was walking around with an Alzheimer's patient all day, we aren't "marked" that way, but I have come to understand that being the full time "partner" for Kenny is taxing in ways we didn't at first understand.  Add in the extra help that Olesya and Angie need, though far less, and it was imperative that I begin to realize that if I want to remain a warm, stable, engaged presence, I needed to make sure my own needs for breaks were met. 

Because I never leave my work place for any extended period of time, I don't get to go home at night and leave work behind.  And when I DO leave home, I usually have some if not many kids trailing along with me.

Because I don't have help most of the time and because I am teacher, mom, every role that a school has for special ed kids, guidance counselor, and more. 

Because I am seldom alone in my own home, maybe 3-4 times a year for a few hours at most.  There is always someone present, always someone to attend to., or some chore waiting for me.  A house for 7 doesn't organize itself, clean itself, oversee itself, fill itself with groceries (Oh Lordy!!).

Because we have five kids, four of whom are 18 and 19, and because of disabilities I  am still driving all five every single place they need to go unless it is after work and Dominick takes over.  We live 20 minutes from Walmart and at least 15 from everywhere else.  There are days I have 6 or 7 round trips into town in between homeschooling.  Do the math, that is a LOT of running.

Because...and this is the hardest piece, actually...I have to be the one solid functioning brain who remembers everything for Kenny that he forgets, which can honestly often be to remind him he put something in the microwave for lunch and 4 minutes later he has forgotten it.  Or his bowl is on the table and he got distracted and forgot to eat it.  Or he has to take his meds, or make a phone call, or wipe his face, or set up a time to get with friends, or figure out what clothes are appropriate for any given day, or he has to brush his teeth, or he has to shave, or...

All. Day. Long. 
This is what I look like far too often these days,
it doesn't even really look like me!

The mental exhaustion sets in, and I do NOT EVER want to take that out on him, or the girls either when I have to step in with brains that may not be working well on any given day.

I think I didn't realize the need for my own well being because, frankly, I have the most pleasant situation anyone could ever want with teens.  They are WONDERFUL!  Helpful at all times, mature, respectful, kind, self-motivated, bright, and they treat me with a tenderness many moms don't receive at this age.  It hid it all, this blessing of a family, it hid how tired I was, and I couldn't figure out how HARD it all is because in the traditional ways, it just isn't hard!!!

But Dominick has helped me see it, the kids have helped me see it, my best friend has helped me see it, and hearing of family burnout, reading of parents giving up, and families broken apart has caused me to take this more seriously than I was.  Some days I am so busy doing the thinking for one or two kids, I can't think straight about my OWN life!  Heck, let me be honest here, I really don't have "my own life"...and that too, is hard.

I am sharing not because I want pity (Honestly, I wish everyone could be as BLESSED as I am!)  but because I have a ton of special needs moms reading this blog regularly, many with kids whose needs are similar to ours with brain damage, FASD, RAD, and more...and they need to hear "one of their own" saying, "Get away!  Take a break!  If you don't and you burn out, your kids will be lost, your family will tear apart, and all your hard work up until now will be for naught!".  For many of us, this is forever, this isn't temporary or "until they mature" because our beloveds may never make it to full independence, and if they DO manage it, it may only be with lots of support from mom coming in and overseeing paying bills, house cleaning, cooking meals, etc. 

This is forever, and you might as well figure out how to do "forever" really well, with joy, with regular respite to keep yourself cheerfully in the game.

So, as a family, we are working together to figure out how to do exactly that.  I am so fortunate to have them 100% behind me, helping me so I can be fully there for them.  We are Team LaJoy, and that means I am part of that team that sometimes needs their guidance and support, too!  This is fairly new to us all, this awareness of "forever" and what that means particularly for me.  Kenny has walked through more than a year of grieving and is coming out the other side finally, the girls have each grieved the loss of certainty over their future as reality has set in and they are slower to gain necessary important skills. 

And I am perhaps in the middle of my own minor grieving process, trying to sort through what it all means for my future, both long term and the next few years.  Who am I?  Who will I never be able to be if I want to be who they need me to be?  How can I craft something in between the need that feeds my soul, helps me grow, and allows me to reach for something more than care taking?

So many moms of special needs kids and young adults I know feel this way, but struggle to share it with others for fear of seeming selfish.  Concerns about how others perceive their decisions, and their need to take care of themselves being just as important as taking care of their child's needs.  Make the disability invisible, like brain damage and Fetal Alcohol Spectrum Disorder is, and it is far harder for others to understand the realities of daily life.  If we were walking around pushing wheelchairs, speaking for non-verbal kids, or dealing with walkers there would be instant compassion.  When your child walks, talks and acts like everyone else and can "pass" as normal, there is a lack of understanding of all the effort it takes for it to appear that normal!

The day after Thanksgiving, I left with my dear friend Candi, and off we went to California for a 3 day cruise...and at the cost of $97 after credits and discounts, I didn't even have to feel guilty about spending money!!  Though as Dominick has said, getting me away is far less costly than therapy for seven ;-)  I was gone a week in total, as we stayed a couple nights in Vegas afterward where we went to see Menopause the Musical (Yeah, that is adding to it all at this stage of my life, isn't it? Hahaha!).  It literally took me 2 full days to begin to unwind and let go of "home", but once I did, it was lovely. 

And you know what?  I came back thinking differently, more positive, more hopeful, and inspired with new ideas for teaching!  The respite renewed me, brought the laughter back, softened me...helped me step back into myself.

Moms, find a way to do it if you can.  You have no idea how much you need it until you experience NOT being "on" 24/7, always advocating, seeking services, tending to unending needs.  When you have special needs among your kids, your family needs you to be the best version of you, even more than MOST families do!

Here are some pictures from our trip, which included Catalina Island and my first time ever to see Dale Chihuly's glass work, and Ensenada:

These views alone bring a sense of rest, they are almost a visual sigh.

I have wanted to see Chihuly's glass art for more than 20 years,
so this was a real treat for me!

At the end of the cruise, we perused the photos taken throughout by the ship's photographers.  I couldn't believe the difference, and seeing this image was actually what spoke to me and made me write this blog for other moms like me:

This is the real me, the not-worn-down-so-tired-of-thinking-for-everyone me.  No makeup, not terrific lighting, just a well rested, "brain had some downtime" me.

This is the mom I want my kids to have, and the wife I want Dominick to have.  She leaves us from time to time, and I need to be paying more attention as she drifts away, because there IS something I can do about it, and it is NOT selfish of me, and they deserve THIS version of me...relaxed, less stressed, warm hearted, attentive.  They don't need frazzled, exhausted, frustrated, close-to-a-good-cry me.

We moms matter, we can't keep going if we don't make sure we matter.  However you make it happen, MAKE IT HAPPEN.  Some of us will still be doing this with 30 year olds, or 45 year olds.  We can't keep up the pace if we don't recognize our own needs from time to time.  I am going to revisit this blog and look at the contrast between these two images of me in the future, when I am feeling it is selfish to get away, when I am feeling awful about not finding joy.

And husbands, MAKE IT HAPPEN...you need wives refreshed, not worn out rags!  In our case, with the responsibility with the store and kids not driving yet, and not wanting to put our kids in the position of being babysitter for Kenny to make sure he is safe, it is pretty impossible for us to get away together for any length of time alone, and thoughtfully, Dominick sees what is needed and always, always steps up as best he can.  He makes it happen, he doesn't begrudge it, he loves me and wants what is best for me.  Me being gone also creates new appreciation for what I do every day, and a deeper understanding for the role I play.

It can be good...no, it can actually be profoundly beautiful...to live within the "less than perfect", but it gets harder to see when fatigue and burnout kick in.

Don't let it happen.  Keep yourself able to witness those moments when life sparkles, and you feel to the marrow of your bones that you are doing exactly what you were meant to do.  Don't allow yourself to miss it, it is rewarding in a way nothing else is.

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