Am I in Denial?

I've been pondering this question all week. 

There are some things I should explain.  I feel my heart growing.  I sit in the back yard with my kids and feel complete joy.  Even if you look back at my pictures from the last few posts, I think you can feel the happiness radiate through our laughter. 

I have also stopped thinking about our future.  Because when I do, I have a bit of a panic attack.  It was a great piece of advice given to me by a friend who has their own special circumstances... "don't think about life 10 years from now, you will drive yourself crazy."  I have worked very hard to push those images out of my mind. 

The national support group's connections .... I have all but severed.  I am still a member, but a superficial one at best.  We attend the conferences, but even the upcoming conference - I will be going for a different reason than we went the last time.  The last time, we went to learn.  To find out as much information as we could.  Now I just don't care. 

That statement makes it sound like I've given up.  I haven't.  I just don't care what anyone predicts about Alexander's future.  I don't care what the research says about LETM1 or any other gene on the 4th chromosome.  They can't give that material back to Alexander, so why fill my head with worries?  I really only care about different therapies we could use to help him.  Those are the things I fill my need to learn time with.  I believe it is my job to help him as much as possible.  So I strive to learn as many different techniques as possible and not focus on what any outcome might be.  I chase out the fear from my head with the emptiness that is bliss.

Which brings me back around to thinking about our future.  I'm fortunate - my closest friends around here have children with Wolf Hirschhorn Syndrome who are all young.  They all have this amazing potential.  And they amaze me every day.  Even though we are moving through things at super slow speed... we still try to focus on the cool things our children are doing.  Alexander ate almost 3 oz yesterday at a meal.  This is awesome! It is super slow awesome, but still awesome.  

The issues that some parents deal with when they have children who are older than Alexander became too overwhelming to hear about.  I have made separate places for myself to go - to be me in my little world of happiness (if I so chose) - or to support and ask questions of parents who have been down this road longer.  I removed myself from the daily e-mails asking questions that I had no answers to... only an anxiety filled heart.  I created a separate facebook page for Alexander.  Only Alexander's "friends" and my mother and mother - in - law are on the page.  Because I needed a place where I could voice my private concerns and not be bombarded every day with talk of seizures, medicines, and illnesses.  I honestly don't even check it all that much.  And I have kept it separate because I need to compartmentalize some aspects of my life. (If you are connected in this community - please don't be offended!)

So what brought on this internal debate into my happiness?  A discussion on respite.  I was discussing nursing care for Alexander with his nursing company and the topic of respite came up.  (This would be, for example, a nurse to watch Alexander while Ray and I went out to dinner.) At this exact moment, we still have people who will watch him.  But as his seizures become more and more prolonged... you can sense the anxiousness of people.  They want to watch him, but they are afraid something bad will happen.  Anyway, the head person from the company said we did not qualify for respite.  My response? "Why not?  He has seizures that last for hours, takes almost no liquid food, and must have a ton of things put through his G-tube... So how severe do you have to be to qualify for respite?" 

I was immediately upset.  I don't think about Alexander in that way.  I don't think about our family in that way.  I was planning for a "future" scenario that does not even exist yet. And we don't do that. 

So the happiness has seeped back in.... as I pushed the future out.  But the nagging question that sits on my shoulder and whispers in my ear is, "Am I truly happy? Or am I just in denial?"

I think the answer is I am happy.  I think that I am just being a good parent to all my kids.  I think I am ~ Living in the Moment~  ... but it could all be a sham.

Ok. I'm ready for it.  Want to weigh in?  Just be gentle if you are going to tell me I'm in denial - remember I'm just a mom.