Showing posts with label chronic illness. Show all posts
Showing posts with label chronic illness. Show all posts

Sunday, October 9, 2011

Revelations: Babies, Asperger's and Life in General

The past two weeks have been very emotional and difficult for me.  I'm not sure what sparked it, but it was both a good thing, as well as a not-so-good thing.  It's been a time full of revelations.  I had a huge pity party, then took a pretty sharp dive off a pretty steep cliff.  After free-falling for a while, I finally bumped back to solid ground very abruptly sometime this past week.  I scared my two best friends enough for them to worry I was going to pack up and leave (I know part of me really wanted to).  They also did "welfare checks" under the guise of bringing dinners over.  I think Shawn got quite a few texts and emails from them, too.  There are a lot of things I keep within myself as a mom and wife; I suppose it was just time to bring them to the forefront, to bring them to the attention of my family.  I didn't necessarily do all of this in the healthiest manner, but at least things are being recognized and dealt with now.

The theme of my week was "How Do People Do This?", also known as, "I Have No Idea How I'm Going to Survive My Children."  A friend of mine has a boyfriend with a child on the spectrum.  She also has two neurotypical boys of her own.  Occasionally I'll get a text from her that says, "How do you do this ALL DAY LONG, EVERY SINGLE DAY?!"  I tell her it's easy--a little rum, a little valium and a whole lot of slamming my head in a cabinet door (I'm joking, of course...  except for the cabinet door part....).  But seriously, I was beginning to wonder the same thing myself.  I felt incredibly overwhelmed with no end in sight.  I took stock of everything I'm dealing with, everything go on in my life and everything I'm doing; I just felt done.  At some point over the next several years (months?), I'm going to lose my mind for good (yes, because I do still have some semblance of sanity; very little, but it is there) if something doesn't change.  You know that old saying, something's gotta give?  I'm always afraid that something will be me.  One of my older friends with grown children and small grandchildren tells me I will miss these days someday and wonder how they went by so quickly.  There are days I wish someday would get here a little faster.  Then I feel guilty for thinking such a thing, in the wake of the tragedies several friends have suffered with their children this year.

There is a bit of guilt attached to some of my revelations, especially where motherhood is concerned.  I felt ungrateful and wondered what my children would think if they knew what was going on in my head. I felt guilty that my two best friends--who are single moms with plenty of their own stuff--were taking time out of their crazy schedules to check on us and offer to help with the boys.  I was looking at everything they handle, comparing our lives and wondering why on earth I can't handle what I have going on when I don't have a full time job to worry about on top it, and I have a husband to help with it all.  This is usually when my friends kindly point out everything I'm balancing (dropping) on my overflowing plate.  Did you know it's really not fair to compare yourself to others?  

I think one of the things I have realized after last week is that as far as children are concerned, two boys are more than enough and I cannot handle, nor do I any longer want, a third child.  There are just too many variables at play.  I love Noah dearly, but there is a reason he was not twins (that said, there are also reasons Avery wasn't either).  Most days I am barely hanging on by a thread of sanity; I can't imagine A) having a third boy and/or B) having another child on the spectrum.  I sadly realized one night, as I watched an infant when we were out, that I no longer feel that ache in my gut.  It was a sad moment for me.  I'm sure there will be a grieving process for myself and Shawn with our very final decision.  We badly wanted to try again in the hopes of having a little girl, but I just don't think it would be fair to us as a couple, as a family or as individuals.  As I looked at that baby, I didn't see a little person who will one day be an adult; I saw colic, reflux, Asperger's, ADHD, anxiety, obsessions, mountains of diapers, more years as a SAHM and everything else I'm trying to deal with or come to terms with.  And let's face it, I'm not exactly Mom-of-the-Year material with the two boys I already have.  Shawn and I struggle a lot with parenting and while we do have some terrific friends who do their best to help make our lives easier, we lack familial support.

I think I am also still grieving the "what might have been's" when it comes to Noah.  There are things our family won't be able to do, moments I won't have as a mom, moments Shawn won't have as a dad, Noah won't have as a child and Avery won't have as a brother.  Some things will be more difficult for our family.  We will all have to work harder to make sure Avery and Noah have the brotherly bond we want for them that Shawn and I don't have with our own siblings.  We need to learn to concentrate more on the tidbits of normal, as well as the blessings we do have because of Noah, rather than the things we won't experience.  It's a difficult moment for me when I walk through the grocery store with my children and I realize I'M now the mom I used to look at and think, "Oh, my kids will never act like that!"  Our family is one of the examples of what can go "wrong," the family no one else wants to be like.  Sometimes I want to snap at the staring people, "My kid has Asperger's, what the hell is wrong with yours?  Watch it, or I'll let mine breathe on yours."  Other times I just want to pin a sign on my chest that says, "I have a college education from a very good school, really I do."  I believe we are pretty well in the clear with Avery, but I don't think I'll be able to breathe a full sigh of relief until after his third birthday.  While he does not have AS, there is always the chance he could slip into full autism.

Along with Noah's diagnosis, I am also still grieving the many deaths and other losses our family has been through this year.  Some of them have hit me rather hard and it's not one of those things you just get over.  It's a daily struggle and sometimes grief just hits you out of the blue.

Then there are my health issues rearing their ugly heads again.  I'm quite certain it has to do with my stress level. It's difficult to come to terms with not being able to lift my toddler in and out of his crib or a grocery cart.  There are days I feel so lame that I worry I'll need my cane again to walk any further.  Then I realize I haven't been able to get through the day without a pain pill in months.  I don't want to be that person again.

If things don't change with Noah, myself and a few other things, Noah will have to return to public school next year.  The thought scares the daylights out of me, quite honestly.  This week I had an email from friends of ours with a son on the spectrum; while they never openly said anything against homeschooling, I could tell they didn't think very much of our decision.  Recently, they've decided to pull their son as well and begin homeschooling.  So, what is wrong with me that I can't handle this?  That it feels as though every other parent is pulling their child when I'm considering putting mine back into public school?  The public school decision is one that needs to be carefully thought out and planned.  First, I will need to make sure Noah would get the resources and help he'll need to adjust and be successful.

Some of the necessary change in behavior and thought patterns are up to me to make.

The long and short of it is that I can't keep going on like this.  I need more support and Noah and I both need a break from each other.  Shawn is great and does his best to help when he's at home, but he doesn't get home most evenings until close to the boys' bedtimes.  That means that I am the teacher, the primary caregiver, the chauffeur, the chef, the disciplinarian, the laundress, the maid and everything else all rolled into one not-so-neat little package.  That also means that I'm in charge of all the extra-curricular things Shawn thinks Noah should be doing.  It means I don't get a break.  Most days I'm too tired to eat, much less think at the end of the day.  Some nights I go to bed in tears, other nights I'm too tired to even cry.  I keep telling myself I should be able to do this--I'm a mom, after all.  I'm dealing with less than other people deal with.  So, why can't I get it together?  There are times I feel totally taken for granted (who doesn't), as though no one notices how much I do until I don't do it.  Like any human, I need to be acknowledged for everything I do within the home--and everything I give up to be here.  I just want to know I'm appreciated and that I'm more than just the chores I perform daily.

I need to make sure that I make time for myself and then force the issue with Shawn when/if it looks as though it may not happen.  I need to find something that I enjoy doing that will give me fulfillment and purpose outside of the home.  I need to find a way to do things that I enjoy, something that makes me Amy.  I need to have goals I can easily achieve as a SAHM.  Whether that means going back to work part-time, going back to school or just finding a hobby or two that I can do without the children, I don't know yet.  I can't allow things to get to the point they got to last week again.  It wasn't healthy for any of us, especially Noah and Avery.

At the end of the day, I'm still grateful for the grace, mercy, forgiveness and understanding my family and friends choose to grant me.  I'm also grateful for the same things God grants me.  Even when I don't deserve it.  

Tuesday, April 19, 2011

Surviving, Thriving and LIVING

As a person with chronic illness, I find word phrasing to be an important part of my life.  Some people call me nit-picky, but I really do believe that our wording can have a negative or positive impact on our attitudes, and in turn, on our health.  When I hear someone say, "I suffer from _____," I ask them to try rephrasing their statement to "I live with _____" or "I have _____."  To me, the wording can make all the difference between allowing my illnesses to conquer me, or me conquering my illnesses.  Much like the old Tylenol commercial:  "I have arthritis, but arthritis doesn't have me!"  I have experienced a partial physical healing, but for me, my true healing came when I accepted what was happening inside my body.  I decided to start LIVING rather than, well, dying.  Celebrating life and what I've been given is a much better way to live.  I suppose, in a way, it's my own mission statement.  This is the example I want my children to see me setting for them.

I was reminded of my mission statement twice today in less than five minutes in the grocery store parking lot.  As I pushed my own weary body, kids and overflowing grocery cart uphill through the parking lot, I passed one license plate with the pink breast cancer ribbon that was personalized to announce that not only was the driver a survivor, but pregnant!  As I was marveling over the blessings in that family's life (and yes, smiling through my happy tears for someone I don't even know), another car passed with a wheel cover announcing that the driver is a Lupus survivor.  I did feel compelled to leave a congratulatory note on the first car (from one mommy and survivor of another kind to another), but I couldn't quite muster up the courage to knock on the window of the other car and thank that driver for sharing my viewpoint (the word stalker comes to mind...)!

So, here I am, surviving, thriving and LIVING...  In left field, of course!



Tuesday, February 8, 2011

What Do You Mean I'm Not Super Woman?

Yesterday was a long, exhausting day for me, shuttling myself and Avery to various appointments and errands.  I felt it when I attempted to get out of bed this morning.  Every single bone and joint in my body was locked up and refused to move when my brain told them to.  When you wake up crying, it’s not good!  As I contemplated my next move (roll to the left and cry, roll to the right and cry, whimper pathetically while my husband helped me out of bed or just give up and spend the day in bed), I reflected on yesterday’s frustrating appointment with my neurologist.

“Well, you’re not Super Woman.”  I laughed as my doctor’s words rang in my ears, even 24 hours later.  What could he possibly mean?  Huh, I’m a MOM.  Of course I’m Super Woman.  Duh.  I’m raising two boys, doesn’t that in itself qualify me as Super Woman?!  Silly doctor man doesn’t know what he’s talking about!

I might believe I’m Super Woman, and my family might believe I’m Super Woman, but my body is a different story.  And unfortunately (fortunately?), my doctors agree with what my body is telling me.   Things are getting worse and it’s just plain hard to admit.  I have new symptoms that no one can explain and the old symptoms are worsening.  I can't tolerate the daily meds that are on the market, so all we can do is treat the symptoms.  There aren't any answers, there aren't any solutions.  I'm just plain tired of always feeling this way, of not sleeping, of the constant pain and extreme exhaustion.  God and I have plans for this life!  I have things to do and places to be; I don't have time for this nonsense!  My brain says go, go, go; my body says please no, no, no.  How much more of my life will I have to give up?  I still want another child, I enjoy being able to 'take care' of other people by providing meals and volunteering.  My –ologists are still pushing me to go to a specialty hospital with bigger, better, newer, more knowledgeable specialists, facilities, testing abilities.  I just want my current –ologists to figure it out or try something new!  I don’t have time for new specialists who are in a different state.  My kids don’t have time for me to go to new ones who are in a different state.  I don’t have time to start over with new doctors, new tests, new medications.  As I said to my neurologist yesterday, and as I’ve been saying to him and my other –ologists for months, in a perfect world, sure, I’d love to go to this hospital.  But I don’t have extended family to help me out.  So, I asked my doctor:  Who is going to homeschool Noah, take him to his therapies and other appointments, take Avery to his playgroups and make sure everything else I do gets done?  Basically, who is going to be me in my absence?  That’s when my doctor laughed, shook his head and said, “Well, you have to take care of yourself too if you’re going to take care of your children.  You're going to end up in a hospital one way or another eventually.  You’re not Super Woman.”

So, until my doctors figure either how to replicate me, or how to replace me, this very tired Super Woman is just going to keep plugging away until someone figures 'it' out or I fizzle out!  Eat my dust, you rotten little useless autoimmune system!
(What do you mean I have to get out of bed again tomorrow?  But I just did it today!  Can't that wait until Thursday????)


Good night all!