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Am I in Denial?

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Wednesday, June 8, 2011

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.

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At June 8, 2011 at 12:40 PM , Blogger Heather said...

Ha! this is a good question, because I've been asking myself the exact same thing recently. After reading a few things from other moms who are worried and anxious about all things related to their child's current and future needs, I've started to question my own contentment. I really feel pretty good about things as far as Frank is concerned. There are other areas of my life that are far more anxiety-inducing (jobs, finances, moving, etc). Am I naive to think that because Frank is healthy now, that he will continue to be? It's easy to take care of an 18-month-old who doesn't walk or grasp toys or feed himself... but will I still be so content when he is 18-years-old? I don't know.

I like your friend's advice to not worry about the future. We don't know what's in store for our WHS kids, but let's remember we don't know what's in store for our typical kids either. Right now, when I look at any one of my children, Frank included, I smile. And it's genuine.

So I don't think you're in denial. Right now you're happy, and let's not worry about next year before it gets here. That goes for all areas of your life, not just Alexander.

Love your writing, by the way -- you always have interesting things to say. I don't always have time to comment, but I always look forward to reading anything new you post.

Hope you're having another happy day!!

At June 8, 2011 at 4:50 PM , Blogger Laura said...

I don't think you are in denial- I think you are choosing to focus on the gray....
I know that doesn't make any sense unless you have seen the optical illusion I am referring to. Here is the link, check it out then come back and finish the comment...

So if you focus on the black dot- the gray haze completely disappears, even though there is far more of it. The black is one very small portion of the whole. Wolf Hirschorn is one portion of your life. You are choosing not to let the happiness and joy disappear by focusing on that one piece of the whole.

At June 8, 2011 at 5:26 PM , Blogger Kristin said...

What Laura showed you is EXACTLY the way it is and should be- so well put Laura. I do not think that you are in denial at all. I think that you have chosen to accept the things that you can not change - what is missing from Alexander's 4 chromosome- and are focusing on the things that you can change - the type of care that Alexander needs. I think that is just proof that this year you have come full circle with what you have been dealing with and you can be happy with this moment in life. If you spend too much time wondering about the future then you will miss the gift that is today right in front of you.

I <3 you girl :)

At June 8, 2011 at 7:25 PM , Blogger Kristen said...

Heather - thank you so much for the compliments! They seriously mean a ton.
Laura - Your interactive lesson was awesome.
Kristin - <3 you too. :)

At June 8, 2011 at 8:18 PM , Blogger Kisses4Kaylee said...

It is funny (not really) to read your response to the Nursing company; I had the same exact question for my insurance company today about getting nursing for Kaylee at all. They seem to think that we are seeking nursing because we need caretakers. Despite being told and receiving medical documents indicating a g-tube, as-yet uncontrolled seizures, esophegal weakness, express danger of aspiration (she cannot take any thin liquids at all), immature neck control, low muscle tone, and bad, nightly cases of reflux...apparently, she is not needy enough to warrant nursing care. It makes me sad, angry, and frustrated. I am definitely not one to have an opinion about coping strategies; 16 months later, I still cannot find peace of mind and stay in the present. Perhaps that is because the present is scary enough that I do not need to even project that far ahead-- Kaylee has been in constant respiratory distress every night since coming home from her second surgery- vomiting her feeds and inhaling them back into her lungs. All I can say is that you have a very happy disposition that, regardless of whatever may or may not lie behind it, is inspiring.

At June 9, 2011 at 2:52 AM , Anonymous Anna said...

As someone who is waaay further along the track in the WHS thing, I have to agree with the advice to not think too much about the future. I have torn myself apart time after time thinking about the illness that may be the last, or what will happen if/when Ryley turns 18. I think thinking about the future in some ways is something you do have to do, as a natural process of healing, but it shouldn't be clouding your thoughts. Does that make sense?
The thing is that with every new year, there comes new issues to face and overcome.
We just had a visit from a case manager and I had to go through my story all over again and she was blown away with the complexity of WHS and the things we do on a daily basis. The thing is though, that this is all 'normal' to us. We have adpated our lives to include Ryley and his needs. As we would do with any child of ours.
Sometimes though, you do just need to take one day at a time. And there is nothing wrong with that.
I think it is important to just read things do with WHS with a grain of salt. I often stay away from blogs or FB if I am going through a patch of not coping. Sometimes you don't want to read the issues people are facing, or celebrate the achievements. That's ok too.

For what it is worth, I wouldn't say you are in denial at all.



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