Monday, January 11, 2016

Put On Your Own Oxygen Mask First

Stress is insidious, it sneaks up on us as we are busily living our lives, handling a little more...then a little more...then a little more...and then one day, we simply can't handle it anymore and something snaps.

I heard that awful snapping sound like a taut rubber band letting go this morning, and I think both Dominick and I were awakened to the fact that both of us, but I in particular, have an enormous amount of stress in my life right now that neither of us realized was present to the degree it was.

I have spent the past two months sleeping no more than an hour and a half at a time each night, as joint pain has caused some real sleep disturbance, and I am sure as thoughts have run through my head.   A new mattress may help, but that loss of deep, regular sleep is certainly a contributing factor.

But you know what?  It's not just that.

We talked a lot today, after I had an early morning Sob Fest, which is quite unusual for me.  I am far more of a "Get in and get 'er done!" kind of gal, not an "Oh woe is me!" kind of woman.  I suppose I am no different than most moms at this stage of life, sandwiched between an aging parent and kids still in need of parenting.

But the past couple of years have been doozies, and it isn't getting easier, and in fact it is gradually getting harder.  Little by little, more and more has been dropped in my lap, and I sort of soak it up and keep moving along.  Today it caught up with me, and that was perfectly ok.  Sometimes that has to happen in order for us to release some of the pent up frustration and move toward healthier solutions.

There have been major changes in our lives, while still trying to keep everything afloat.  Purchasing the store meant financial sacrifice for hopeful eventual long term gain for the entire family.  We knew the first 2-3 years would be difficult, and we were correct.  Unexpectedly, Dominick's inflexible work schedule has proven to be harder on the family than we anticipated.  It has not only added another part time job of bookkeeping for myself, but has meant I am essentially single parenting as he semi-permanently works 12 hour days.  Because of where we live, many of the medical appointments or other activities for the kids are no less than a five hour drive away, with Kenny and Matthew both being treated out of state. 

We are also coming to a firm understanding that parenting Kenny through adolescence and into adulthood is going to be a tremendous task, one gladly accepted, but one that has seriously been overlooked by me as being as all encompassing as it really is day to day.  It has been such a gradual ease over the years into a more caretaking role with him, that I guess I never really noticed how much thinking I do for him throughout every single day.  I don't SEE myself as a caretaker, I see myself as just a mom, but it is way more than that and I am just beginning to allow myself to view that role differently.  Maybe I don't like it and have avoided the thought, I don't know, or maybe I really haven't understood it to the degree that I am beginning to.

I told a friend today that if Kenny had gray hair and had the label of "Early Onset Alzheimer's", everyone would instantly have an understanding of what our life is like.  Because he is young, and presents as such an intelligent and thoughtful young man, no one has a clue what life is like for all of us, particularly Kenny himself.  The truth is, Kenny could not wander around town without getting lost...just like an Alzheimer's patient.  Kenny loses things ALL the time, it is a daily occurrence... just like an Alzheimer's patient.  Kenny can't always remember things like personal information, facts, or phone numbers...just like an Alzheimer's patient.  Kenny can't keep himself safe around traffic, or in the kitchen, or with strangers...just like an Alzheimer's patient.  Kenny can't remember his personal hygiene every day like sometimes forgetting to change clothes or shave or brush teeth...just like an Alzheimer's patient.  And Kenny can not follow directions well, unless they are giving one step at a time... just like an Alzheimer's patient.

And yet no one would look at a 17 year old affable young man and see all of the above, but it is how we are living... we live with the equivalent of a happy Alzheimer's patient.  

We are beginning to understand that caretakers of Alzheimer's patients need regular respite, and so do I.  I have to think every day not for one person, but for two all day long (and that doesn't even take into account the typical thinking a mom of five teenagers has to do to make up for "Teen Brain") . I not only remind him of his personal grooming, but I have to provide him with the words he is trying to say when he can't come up with them, or I have to straighten out his explanations when they aren't understood.  I also have to explain him to others, as I did this morning before church with one of our long time friends working with him on teaching Sunday School who had no idea Kenny had the challenges he did.  I interpret the world for him, and him for the world.

For example, today we had a long conversation about goals for Kenny, as he has seemingly slipped a lot in recent weeks, no doubt due to lack of a schedule around holiday time.  So we sat at the table, the three of us, and talked about what goals he needed for the next couple of months.  One of them was to master his morning routine.  How many 17 year olds do you know would take 15 minutes to try and remember all the steps for his morning routine to make certain he didn't forget things like shampooing his hair?  I walked him through it, trying not to provide the answers, but letting him try and recall each step.  Finally, he came up with all of them.  

When we were done, Dominick looked at me and I could tell he suddenly had much greater clarity about how hard this is.  He understands to a degree, of course, but because he is not working with it day in and out, he hasn't really seen the extent of Kenny's deficits regularly.  

So, as we are coming to internalize on a deeper level that I am Kenny's Life Coach, as well as educator...and educator to Matt, Angela, Olesya, and Josh...and sort of single mom for at least another couple of years...we are understanding I need real regular breaks or I will be the one breaking.  With Kenny, this is forever.  We anticipate that he will eventually work at the store, with me side by side as his job coach for perhaps years in order for him to be able to eventually develop a routine enough to be able to do anything there without supervision.  And I do mean years and years of side by side assistance and reminders, coaching...and it appears that even then he will need full time close supervision.

Because this isn't going to get better.  It's not.  He can learn, he can become better educated...and for some reason remember that sort of teaching as long as I am teaching specifically to how he learns.  But his organizational skills will never get better.  His memory will never get better.  His judgment will never get better.  His auditory processing will never get better.

This is my "Working it Out" place, and maybe I need to say this here a few times so I can really take it in.  I need to come to an understanding around this because it helps me be a better mom and Life Coach for him.  It helps me keep expectations appropriate, but right now, I think what I need to understand more than anything is that I am the mother of an Alzheimer's patient of sorts.  That helps clarify for me what my needs are so that I may be able to be there for him in all the ways he needs me.

I need to put my own oxygen mask on first, and until very recently, I haven't understood that need.  It was Angela who pointed out the startling fact to me this week that I have almost no adult time at all these days, that if I get an afternoon or evening a month in adult company outside of church on Sundays I am doing good.  Life just hasn't easily allowed for it right now.  

Dominick and I have also talked about how I never get to leave "work", and it makes relaxing at home harder.  Angela kidded me today that even though none of them try to bother me if I am on the phone, if they all come to just say good night that is five interruptions!  While Dominick works incredibly long hours, he gets to leave his place of employment behind and come home and truly relax, where grading, bookkeeping, teaching, laundry, shopping, cooking, driving, "churching", mothering and other tasks mean I am on the job 24/7.  While they may be the most lovely people in all the world, it still means a level of stress I never get to leave behind.

Homeschooling at this age is not what it is for other families.  I read through every single page of every single textbook with the kids, then question them using Socratic methods.  Other families aren't dealing with the cognitive issues we are faced with, nor the language learning issues, and when their kids are this age, they throw them a textbook and send them on their way.  Our homeschooling is intense, and is truly a full time job for me.  While very enjoyable, it is weighty.

We have a long haul to go here, with at least three more major surgeries ahead of us in the next year and a half or so, years more robbing of Peter to pay Paul, at least five more years of homeschooling plus being career guidance counselor and post-high school academic coordinator.  We have disability advocate and job coaching to add in, aging parents out of state to visit and handle finances for, and friendships to somehow try and maintain.  

My oxygen mask has to stay on.  We are going to be intentional about getting me out of here more often and for decent stretches of time so I can begin to breath again, and think more clearly.  I am going to jump in more in ministry work at church because that fills my soul tank up, which has become depleted over time.  I am going to try and find some way to play a little more, and who knows, the Steam games Matthew purchased for me for Christmas might just help in that regard.   I am going to try and squeeze in more time with friends, my ever faithful troops who put up with me and my lack of availability.  That oxygen mask is darned important, and this morning proved to us that no one put it on me, but I have been putting it on everyone else.

All is well, awareness and willingness to fill gaps is all that it takes.  Accepting hard truths helps allow for changes in thinking as well, and we realized today that Kenny's needs are hard on me in gentle ways, but hard nonetheless, and that shouldn't be overlooked.  As careful as we are to meet his needs, we are now seeing I need to be cared for as well, or the lifetime stretching before us of me thinking for two of us will seem impossible to handle.  

And now, at 3:20 AM, maybe I have dealt enough with the turbulence that sleep will finally come.  Writing always helps me "put it away", though it likely makes for boring reading for blog visitors!  And I purposely don't go back and edit my content, as I would for any writing project, for this place is my personal "luggage compartment", it needs to be.  I just leave the bay door open so you all can take a peak at the mess.  So, my oxygen mask is firmly in place, and as pilots will assure you, a little turbulence never killed anyone...they always make it through.  So will we, there's certainly enough love here to ensure that.

Sunday, January 03, 2016

Living with my Lesser Self

He stands there, lanky body draped over mine, heaving great sobs of frustration.  My tears mingle with his, as I ask his forgiveness for being so upset and angry at the wrong target...him rather than his very broken brain.

Kenny lost his wallet again.  He can't locate his Christmas stocking to pack away despite JUST having it in his hands yesterday...or maybe earlier in the week...he doesn't really remember that either.  He just received a replacement paycheck after losing his last one.  Every time he turns around, he is doing something incorrectly, he understands people incorrectly, he is always, always wrong.

The ache of being Kenny is palpable, yet he has a graciousness about him unlike any other human being I have ever met.  He forgives me, oh how he forgives me!  He forgave me over and over again early on when we had no idea this was more than just obstinate behavior.  He forgave me as a ranted and raved at him over losing his 4th or 5th jacket, who knows, I lost count.  He forgave me every time I looked at him in a state of confusion over how such a seemingly bright kid could do such...stupid...yes I said it...stupid things.

Tonight is one of those "crappy mom" moments, the kind of night when I heard myself raising my voice at him this afternoon, exasperated beyond belief because I am tired of this fight.  I raised my voice, and I expressed my frustration at him, as if he could actually change anything and wouldn't in a heartbeat if he could.

You see, I forgot.  I forgot that I have to deal with it, but he has to live with it forever.  I can escape it from time to time, he never can.

And still that young man loves me, desperately, completely, not because I am his lifeline or the only one who really understands him, despite not always acting like it.  No, Kenny loves me simply because I am me, as pure a love as ever there was.

You had no idea we lived with Jesus, did you?

Yea, reminders day in and day out.  He comes to me in the morning and says ever so cheerfully, "Good morning mom!!  How did you sleep last night?  Let me give you a hug." and then he bear hugs me for as long as either of us wish.  He rushes to help me walk over ice, he opens car doors for me, he carries anything I might have to carry, a true servant's heart.

Today, yet again, I failed him.  I expected something from him that his brain will never ever allow...memory.  I made it about him, and not his brain.  He was at a breaking point I just hadn't picked up on, probably because I was so busy wallowing in my frustration with him that  I couldn't step out of my own thoughts and compassionately put myself in his shoes, something I try to do as much as I can, but today it didn't work.

My lesser self gained a temporary victory today.  Unfortunately, I'd love to pretend I am one of those super perfect, wonderful blogging moms who always gets it right, or who has just the right way to put into words their "humble acceptance of their failures".  Alas, I am neither...I am a mom with a very challenged kid who lives in a family full of challenged people who totally blew it, and does so far more often than I care to admit.

I am tired.  I am tired of beating my own head against the wall trying to get answers and figure out a future for a VERY bright yet VERY handicapped young man.  I am tired of not knowing what happened to my sweet son, or how to fix it.  I am tired of hurting for him.  I am tired of having no clue how to help him feel he is maturing into the adult he is becoming when none of the maturing experiences are easily available to him.  I am tired of dashed dreams, not knowing at this stage when to step in and when to step back...and having him tell the nurse he was born in October of 1895 when his birthday is November 15, 1998.  I am tired of no one ever understanding how hard it is sometimes to just be us.  I am tired of trying to make laughter come to lighten the moment when all I want to do is groan inwardly.  I am tired of running back to church for his iPad which he left there THREE WEEKS in a row, and doing so with a smile.  I am tired of doctors and others who work with him for 10 minutes saying, "He is a bright, capable young man, not much wrong there." and yet he can't follow the simple recipe on the back of a cake box...not ever.  I am tired of being told by others more in-the-know with kids like him that, "He is going to fall through the have almost done too much for him so he appears far less disabled than he really is based on certain test results.  He can't get services, he is too smart...and yet he will likely never be able to hold a job."

As tired as I am, I can't begin to imagine how tired he is...of never hearing a single thing correctly, of never being able to get directions correct and act on them, of always losing every single thing, of seeing siblings succeed and move gradually into adulthood and talk about things he will never be able to do, of having to choke down and swallow a future that will never look "normal" and try and find meaning and worth in a life that has SO MUCH DEPTH and yet so much that doesn't work right.

My lesser self won today, but yet again, I was forgiven, yet again, I was held and hugged and treated with respect afterward.  My better self lost today.

But his better self won.

Maybe that is all that is important on this night.

I love you so much, Kenny.  I will keep hanging in there with you, if you keep hanging in there with me.

Friday, January 01, 2016

2016 Attitude Adjustment

As 2015 wound down and 2016 is sparkly and new, I have a somewhat heavy heart, and I have no solid clue why.  Something is off, something is feeling like I am not really me right now.  I think we all go through periods like that, but I am determined to pull myself out of it.

Maybe it is because 2015 was a year filled with more than I can possibly put into words for us in terms of stress, shifts, and life changing "stuff".  Maybe it is because there has been a lot of relationship sadness surrounding me this year with those close and far.  Maybe it is because I feel a little lost at this stage of my life, behind the scenes in just about every way, slogging along, doing the mom and wife thing as best I know how and always feeling (Not just feeling, if I am being honest, but KNOWING)  I could be doing it better

And maybe, just maybe it is my fault and I have not done the things I know fill my heart.  Maybe I need to take some responsibility for it and not wait to magically feel cheerful and lighthearted.  Maybe I have fallen pray to the insidiousness of "Facebook-itis" and comparison, fallen prey to the "I am not ever going to be good enough" syndrome, fallen prey to forgetting to Whom I belong and that alone gives me worth and value.

I shared some of this with a friend in an email this week in an effort to try and work through it in my own head, and it is hard to explain the malaise that has settled over me.  I realized a couple of things last night...I need to blog more, because blogging really refocuses my attention on the things that matter.  It serves as my Gratitude Journal, and forces me to reflect on all that is good...and my life, and the act of blogging reminds me that what I have and who I am is enough, and that what I see reflected in traditional media and social media is not "real", it is merely smoke and mirrors, representations of halves of lives, or is complete fiction.

I also need to be more proactive about pursuing that which fills me up, much of which has been missing this past year or two.  All of my reading has been for tasks, not for fun...I need to have the immersive experience of being called to read "just one more page".   Giving up singing with Sweet Adelines took the one thing away that was really all for me, but trying to fit it in right now proved too difficult.  Church choir is not singing as often, either, and I realize that music is one of those things I need to seek out in the ways that make sense for me with my life right now.

How often in the past have I written about how much is "enough"?  And here I stand, needing the reminder yet again.  This must be my personal cross to bear, the thing that will sneak in and steal my joy lickety split.  It has been a hard year, but "hard" doesn't mean bad.  The first half was quietly terrible, filled with concern and fear for our future, worries about losing everything and having to leave our home.  The second half was almost miraculous, requiring the single most enormous leap of faith we have ever taken, accompanied by lots of learning and more hard work, but God provided so well for us, though we have a very, very long road ahead before we feel "safe".

And as I write that, maybe I have hit the nail on the head, for I just felt that "ah ha" that sometimes occurs when we ramble.  I don't know if I have been able to let out the deep breath I took and held last winter.  I don't know if I have been able to let go and trust that God has our back on this, that we would not had been led down a path of financial doom as long as we really, really listened...and we did.

I forgot to breath.  I forgot to trust.  In the "doing" I forgot the "being".

Reading a blog post today from Glennon Melon Doyle, I heard her speak to my heart...

I don’t want a new, better life in 2016. I just want new eyes to see that my life is already staggeringly beautiful. Tweet: I don’t want a new, better life in 2016. I just want new eyes to see that my life is already beautiful. @momastery 
I don’t want to be a better mom in 2016. I just want new eyes to see that the miracle is not good better best — the miracle is that these people are mine and I am theirs. Full stop.
And I don’t want to be a BETTER ME in 2016. Screw that. I don’t want to chase after some imaginary more fabulous version of myself. I AM what the people I love need. I already AM. And when we are always BECOMING we have no room to BE. So I’m done striving. I’m fine, thanks. I’m showing up to love my people and you and the world this year JUST AS I AM. 
So here we are, January 1, 2016...the year I will turn 50, the year I will celebrate 30 years of marriage, the year I will live more intentionally and accept that me and mine are enough and that others don't get a vote.  I will not ruin what is beautiful and holy because I refuse to live up to some sort of standard others have established for me without my permission, or because others have no understanding of what it takes to live my life.  I will be unapologetically, wholly, me.   I will attempt to live each day in joy and gratitude, and perhaps I will fall back into my own skin.  I will chase God with a vengeance, because I need the Spirit to be walking hand in hand with me in order to be happy.

Watch out, 2016.  Cindy is comin' and she is gonna grab you and shake you for all you are worth!

Being together, that is what matters.

The Bread of Life, that is what matters.

Enough food, decent shelter, and medical care, that is what matters.

Friendships that are true...that is what matters.
  Happy New Year!