update

Do not dwell upon your inner failings ...Just do this:  Bring your soul to the Great Physician- exactly as you are, even and especially at your worst moment.....For it is in such moments that you will most readily sense His healing presence.

~Teresa Avila

I've been informed, more than once, this week that it's past due for an update.

Sometimes, I find I am more than ready to pour out my heart and soul into writing about our experiences.  Like I have to get it all out of my system.  At other times, I feel like I need to keep things to myself because I feel like I'm always complaining about one thing or another.

So, here goes....

The things that have been gettin' my goat lately:

  1.  Insurance
   Sometimes, I feel like they train the insurance people to make my life miserable - on purpose...yeah, like a written script or something.  My rational self tells me this is not so, but after calling insurance(nearly EVERY day this month) Zeta has FINALLY received approval for some injections she needs..... so explain that........and another thing - they send me an EOB and a letter that says they've sent me a considerable size check to send to a company that has been patiently waiting for they're reimbursement - only thing is the check didn't show up....well, at least not until 2 weeks after the time insurance said it was sent.....    I just know that our insurance file is red flagged....I know that when I call, they see my number (of course they have caller i.d.) and they start giggling...."let's play the pass her around and put her on hold game and see if she'll hang up this time....and if she doesn't then let's just say we'll call her back tomorrow....and when she calls tomorrow we'll play again"....Seriously, talking with insurance is sometimes a challenge in mental stamina.

And while we're on insurance.......
  2. Our life is NOT boring
   Steven broke (or, rather, cracked) his foot last week.....and, I don't know how, but insurance claims we have not met our out of pocket nor deductible for this year.  Evidently, I don't know how to read all those letters and forms and stuff they send us.  Nor do I understand how any of it is calculated.  I suppose since none of the rest of us go to the doctor that Zeta cannot reasonably meet our complete out of pocket and deductible all by herself.  Steven and Chancelor must have some inkling of this and decided they needed to get in on a little of the doctor action.  We've spent more time in their doctor's office this month than we have in the last five years.  I'm beginning to wonder - were my children just magically not sick last year, or do I just not remember since Zeta and I were always in the hospital?....... Oh, by the way, Steven has to wear this boot thing for 6 weeks - and not horse around .....or jump....... or climb during these LONG 6 weeks - do you know Steven?????  If you do then you know that this is virtually impossible!  One positive thing that I can say is that I've found that I have to make myself more ACTIVELY engaged in doing things with Steven so we can try to avoid having him finish breaking his foot in half - or worse breaking something else!  Chancelor has become very clingy, and weak and sickly at times.  Good thing is.....it forces me to pay more attention to him when I have the opportunity.

3.  Nothing is predictable
 PLAN anything?   Uh,....no.   I don't even try to plan to do anything outside of the house unless it is a doctor or therapy appointment.  Do you know how hard it is to feel like the sole person responsible for making sure another person lives through the day (add to the fact that that person is your CHILD!)  I do not, and most often - cannot - get out of the house to do certain things with or for my boys.  I am referring to the fact that although our overall doctor appointments have decreased in frequency Zeta is still unpredictable.  She gets sick and runs fever every 10-14 days.  So I spend the couple of days prior, and a few days after, staying close by for fear the fever will get out of control or she will start with the huge seizures and blue spells again (fortunately they haven't).  Since our doctor's visits are getting fewer and farther in between it means we are beginning to be able to schedule OT,PT, Speech, and Vision therapy more consistently and more frequently.  It's wonderful that we are finally to this point....although it is still
pretty exhausting. ......

next....

Do anything outside of the hours that Zeta's nurse is not here?  Unheard of.... Going somewhere or doing something if we don't have a nurse usually requires that Stevie take off work so I would be able to go anywhere (as he is the only other person comfortable and partly qualified to tend to Zeta) - but shhh, don't tell him I said only 'partly' qualified lol-  .  Honestly, the only person I feel 99.99% confident in leaving her with is her nurse...and if we're being completely honest - right now, she is the only other person that  feels qualified AND comfortable staying alone with Zeta.    She knows this, and I think she knows how much we appreciate her....but I can imagine she probably feels a good deal of pressure too.   Even Stevie doesn't feel absolutely 100% comfortable being alone with Zeta for very long periods of time.  I imagine it is difficult to feel comfortable unless you are used to doing everything she needs on a daily basis.  Zeta actually qualifies for more nursing hours, but we don't utilize them because I still don't think I would sleep even if we had a night nurse....I would be too busy listening to figure out  what was going on....and plus there are times that we just need some alone time as a family...... and at this point it is just not worth it for them to send a temp nurse if our regular nurse is not able to work....I would spend more energy teaching and looking over her shoulder than anything else.   

The flip side of all of this is that although it seems our life is exhausting and sometimes hard to manage we do find ways to manage and counteract.  We do realize that things could be much worse.  We could be trying to do this without a support network.  Fortunately, we have the most awesome families and close friends that help us. We could be where we were a year ago.  We could still be fighting the blue spells everyday.....We could still be spending days, weeks, and months every  week or two in the hospital.......but instead we are getting stronger.  Zeta is finally at a point where I can comfortably say she is fair and stable (and be speaking in terms of her general future rather than just the day or the moment). We are finally getting past the 'guarded' stage.....feeling a little more comfortable each day.  We are home, together, as a family.  I am able to spend more time with my boys.  We are learning to enjoy normal things together as a family again  (not just the borrowed moments and days here and there).

In a way, being the parent of a child with special needs doesn't feel a whole lot different than being the parent of a typical child.  Some days, you're flying high - feeling like Superman on steroids.  Other days, you feel so grossly inadequate that you just feel like giving up.....but then....then you look into your child's eyes and you know that nothing could ever make you give up......  Maybe part of the difference lies in how you feel pulled in so many different directions.  If you give one child all that he/she needs then your other children feel-  or are-   neglected at some point.  It is never intentional, but sometimes it is unavoidable to give one child the care they need without disappointing the other......and .....trying to put forth effort into anything else besides making sure your children are dressed, fed, cared for, and feeling loved  sometimes feels impossible.

Now, do you see why I feel like I complain so much....it feels like I invite you into my pity party.  If you ask how I am, you probably want to hear 'fine'......but sometimes I just can't give you an answer like that.......there are days I would like to just break down and tell you every little thing that has gone wrong.....But I can't do that......and I tell myself I won't do that .   I have to tell myself I won't do it because I look at where we started, what we went through, and how much God an d everyone around us has pushed us through.  I understand, I realize, I KNOW  how very much we have to be thankful for.  I know we could be back where we were.  I know someone, somewhere - right now - is praying and holding onto that one  thread of Hope and Faith  - that one grain of their being that reminds them they are not alone -as they keep watch over their baby or deal with whatever situation is challenging them at the moment. I realize what it means to be thankful for this day, this moment.  I realize how infinitely blessed we are!!

I believe that nothing that happens to me is meaningless, and that it is good for us all that it should be so....As I see it, I'm here for some purpose.
~Dietrich Bonhoeffer