Thursday, September 25, 2014

This Gig Ain't Easy

Here we are, in Williams, AZ, and I decided it was time to have a little meltdown.  Thankfully, it was short lived, but it snuck up on me and I was completely unaware that I was emotionally depleted.  There was nothing in particular that triggered it, and we truly are having a lovely, relaxing trip.  The drive through Monument Valley was nothing short of spectacular...the contrasting hues of the deep red rock and verigated greens of the various plant life were set off by crisp blue skies in which clouds of billowy white were nestled.  Definitely a photographer's dream setting.  I didn't take many photos though, preferring to view it through the windshield or as we stopped to stand in amazement without muddying the experience with a camera in my hand.  I'd post photos, and will when I get home, but I seem to be having trouble posting them to the blog from my iPad, which is all I brought with me.

Spending the night in Utah, we arrived just ahead of the storm clouds, but they rewarded us with a stunning landscape post-downpour that, for me at least, made the entire trip worthwhikle.  We drove to Williams, AZ the next day, and are staying in a very nice campground run by a couple who have owned it for years, and you can tell it is their life.  It is not resort style accommodations, but it is a wonderful family-type facility and we all are enjoying the conversations and friendliness of the owners and others here.  We went to the Grand Canyon yesterday, and spent the entire day walking the rim.  The weather couldn't have been better, mid seventies and clear.  Though we enjoyed the Canyon, every one of us thought the beauty of Monument Valley was unrivaled by the Canyon, and perhaps our favorite part of the visit was people watching, and predicting when Victim #27 would fall over the edge and die.  There have been 26th deaths thus far this year, we were told, and it seems that Selfie Addiction is causing people to use poor judgment in their attempts to get ever cooler selfie photos to post.

This morning, it seems everything caught up to me, and I felt the weight and reality of being a special needs mom in a way I don't think I ever have.  We are blessed with children we adore, and whose behavior is very easy to be around, and I think that has caused me to overlook the day to day stress of dealing with the challenges we have in other areas.

I couldn't ignore it today, for no particular reason, and I felt such sorrow, anger and grief that it overwhelmed me for quite awhile.  There is no getting around it, I am exhausted from being "on" 24/7, teaching, guiding, correcting and pointing out inconsistencies that seem like they will never be "fixed".  Over a 24 hour period there were 5 or 6 instances where the lack of logic was so stunning and "in your face", where memory loss kicked into high gear, that I just felt defeated.  Most people who are around our kids view them as reasonably bright, fairly articulate, and avoiding the spotlight at all costs...none of them care to be out in front, though like anyone they do like to be quietly noticed.  I am realizing it is because they don't want to be seen as "dumb" because they can't always come up with appropriate responses...for some of our kids, their brains don't work as well as others.

Every single day, multiple times a day, I find myself repeating exactly what I just said five minutes prior, or one of the kids will ask a question that I just answered with a solid explanation.  Oh, so many have told me "it is typical teenage brain", and I get that, I know it to be true, but this is NOT typical.  Angela is showing serious signs of disconnect and memory issues at times, not typical stuff but truly not recalling any facts about something we might have studied for a good solid week or more.  We continue to work on strengthening logic daily, but there are moments that all I can do is shake my head and move on.  Olesya is so, so behind in math, and her disability there is staggering, alongside the same sort of logic issues we are seeing with Angela.  Kenny, poor sweet Kenny, the need there is so huge, so beyond my ability to fix, and my heart breaks as I see him try and try, never giving up, and yet watching him do something as simple as a word search and having it take two full hours to complete it is agonizing as his mom.  Seeing Olesya struggle over a simple 3 or 4 digit addition problem is awful, watching Angie as she grows so frustrated at not knowing something she knows she ought to be able to recall is so hard as the emotions play across her face.  Throw in Josh and his emotional turmoil that hits periodically (He is doing very well on the trip, despite crying for 3 days before we left because it just felt wrong to him and he didn't know why), and Matt with his challenges with writing and emotionally as he looks toward surgery and is frightened of it, and I guess it is no wonder I am feeling this way.

And I am tired.  Worn out.  The well is dry.  I am exhausted from repeating over and over,  I am tired of worrying about the future, I am tired of trying to diagnose the seemingly undiagnosable, I am tired of wracking my brain seeking yet another way to get information across that might make it stick, I am tired of no one seeing how damned hard it is every day because learning disabilities are hidden, I am tired of interpreting everything, I am tired of checking in to see if something was understood, I am tired of advocating, I am tired of trying to meet both ends with two on the gifted spectrum at the same time, I am tired of feeling like a failure at least 7 or 8 times a day, I am tired of begging for help where no help exists, I am tired of fighting, I am tired of nothing coming easy, I am tired of reteaching phonics and basic reading skills and months of the year and making sure proper grooming is done at 15 or 16 years old, I am tired of being the logical one for five others, I am tired of cheerleading when there is no one to cheerlead for me.

This is one of those rare days when I feel I can't possibly do it anymore, and I couldn't stop the tears from coming over some stupid repeat of information.  I wanted to scream, but I didn't...and I know that every single day they want to as well.  It was one of those days that has me wondering if any of my kids will ever be gainfully employed, let alone in jobs they enjoy.  It was one of those days when gratitude for all they are was hard to summon because of all the worry, and all the beating up of myself because it feels like I am failing them over and over again because I can't fix damaged brains and I can't go back and redo their childhood.

I want to hit the very next person who minimizes my daily struggle with a shrug and a knowing comment flung out about how it is just because they are teenagers, as if at age 20 all of this will pass and they will magically have memories returned and brains healed from trauma, neglect, malnutrition, and very likely alcohol or drug usage.  This doesn't go away, and that might be the very saddest part for me, because I'd love more than anything to grab hold of that and rest secure in the fact that all of this is temporary, and they will emerge with everything suddenly healed and whole at age 20.

The difference is that I can't have that sort of casual assurance like other parents can.

On days like this I remind myself of what is important and what is going right.  They are deeply good human beings, they are respectful of others and willing to stand up for what they believe in.  They are helpful, kind and incredibly thoughtful.  They are connected spiritually and are active in their community.  They don't hate their parents, despite the fact that at this age, our culture tells them they should.  They are very forgiving of our failings.  They are incredibly hard workers.

I know all of this, I am grateful beyond words for it.  But maybe just for today, I had to allow myself to feel ALL of it...the frustration, the concern, the exhaustion, and more feelings I can't quite name yet.  I really have no one to share all of this with, other than virtually, and that makes it harder.  There is no commiserating with anyone who walks in shoes like mine, and it is isolating.

I got over myself, and the afternoon eased into a beautiful reflection of all the good stuff...we walked the main drag in Williams and visited the Route 66 gift shops, and even returned in the evening to see the old hotel signs all lit up.  Dominick bought us each a couple of caramels, a simple little treat that was somehow so sweet because he surprised us with it.  We played badminton badly, tossed the football around a little, and laughed into the evening.

Special needs moms are not super heroes, but what we go through can often build and build, and leave us filled with doubt.  I am there this night.  It'll get better, I know that, and I'll repeat myself another million times until they get it.  I'll explain and re-explain until they hopefully begin to develop skills on their own to logically think things through.  And I am sure I will shed more tears along the way, some of frustration, and some of delight as I witness a mastering of a skill or an ability to remember something.

Tonight I feel a bit purged.  Maybe I needed to get away from our usual environment for this to rise to the surface, if so, it is good.  I know how blessed we are, and I know we'll all make it somehow.  I wouldn't trae my life for the world, but this gig isn't easy, and I think it just caught up with me.


nancy said...

Cindy, while I can't relate to all of your "special needs", I can relate to some, having daughters who came home at 10.5yrs and 11yrs. Both girls have had IEPs and had Title I math help when younger. English is their second language, as both were international adoptions. I have felt some of the same fears you expressed...still am feeling some of them, especially for our youngest daughter. She's a jr, but still struggles with simple math facts. I sometimes think it's as much math anxiety as memory issues. There's little logic to her math thinking.
I worry especially about if she will be ready to head off to jr college after graduation, as there are also other skills she lags behind in, it seems. Lovely, friendly girl...just may not be ready to be "on her own". Though hubby reminds me that a lot can happen in two yrs, and he's right. I worried about some of the same and also some different issues with our daughter who graduated in May. But somehow, she fooled me. She is in jr college and seems to be doing alright. She's motivated to becoming a nurse, something I really wondered was attainable.
Which is another reason for commenting. For some reason, when you posed the thought of being gainfully employed, I thought of CNA. Our daughter was able to take the first CNA class thru our high school. She is currently taking advanced CNA. She absolutely loves health care! I was amazed, but she enjoys caring for people. She worked this summer at our local nursing home and really enjoyed caring for the elderly. Though she hopes to get her BSN and work instead in a hospital. Lofty goals! Can she do it? I really don't know. But she is very motivated, which is a good part of the battle, I think.
I could go on to describe some of our issues here, but suffice it to say I believe there is certainly a gift or talent or interest that will lead your kids to their futures. God has a plan for them just may not look like the same as their peers of their ages.
Hang in there!
Nancy B

Recovering Noah said...

I've never left a comment here, but I always looks forward to your posts because I truly feel that we are living very similar lives, although my kids are a few years younger than yours (13. 11. 10. and 5). I have searched and searched to find other blogs or other moms that can understand what I'm going through and your blog is the ONLY one I've ever found that seems to parallel my life. I just wanted to tell you what a blessing today's blog post was to me. You articulated so many feelings and fears that I have. In fact, I was just out on the back porch talking to myself (because, you know, NO ONE else understands, so you end up talking to yourself.. a lot) and I expressed the same feelings that you're feeling right now. I don't have any advice or really anything good to say, but just wanted you to know that you're not alone in this. And can I tell you how much I appreciated knowing that I'm not the only one who explains the same thing over and over and over again, even after a very logical explanation? I really thought it was just my family. Thanks again for your blog. It keeps me from feeling that I'm alone in this.

Anonymous said...

You are wonderful, and doing a great job in an incredibly hard place, and your ability to speak so thoroughly and with such absolute caring for the people your children are - to meet them where they are - is beautiful. I love reading your blog, and hearing about your insights and those that your kids have. It sounds like this purge was necessary and healthy and will help you make even greater insights and connections for any upcoming challenges you will face. And hey, you are human, in fact - getting overwhelmed (with ALL of the stuff on your plate!) is absolutely OK. I respect you so much for getting through it, and understanding all of the variables that led to your frustrations and emotional intensity!

Writer200 said...

When those beautiful children of yours were birthed, God knew there was a woman (and man) halfway around the world who were being prepared to become their parents.
Hugs and prayers

Lorraine said...

God bless you Cindy (and Dominic). You are doing such a great job. Maybe the children will never achieve what the world expects, but, because of your parenting and teaching, they will become wonderful, honest, loving, caring Christian adults. There are many special needs adults living independently productive lives. Don't beat yourself up, pat yourself on the back. You are in my prayers.

Lorraine (UK)