A QUIET BIRTHDAY

John William Hasselberger turns 48
Happy Birthday to my husband
Reflecting on life in the future with Daniel

November 1, 2014

The start of a new month, and a sample of what the future has in store, I suppose. With both of my other children away, it was just John, Daniel and I in the house this weekend.  The quiet is both relaxing and unsettling at the same time.

Cold air blasts around the leaky windows and leaves have once again made a blanket of mess on the lawn. I am reminded of the work that needs to be done on this house that I just can't afford.   I am suffering from terrible sinus headaches and it seems that the bad weather is truly on its way.  John turned 48, and we really had an uneventful day just trying to buy him boots took energy.  We never bought him boots because he is one man who is hard to please, and has buyers remorse.  He is a funny simple guy with a giant sarcastic sense of humor and self battles with controlling anger and fighting his own demons.  He's been calm and pleasant lately and that makes me very happy.
We still still love each other very much.  

I wonder what life will be like when Daniel is older and we are older.  Where will we be? November is always a pivotal month for me.  I don't look forward to the holidays, because its completely materialized, but I do look forward to being together with my family.  We don't often leave our home anymore, because having a teenager who is severely disabled makes visits to other people's homes quite difficult.  No ramps, needing to change him, screaming meltdowns, positional discomfort etc.  Long drives are hard on him, and to drive him three hours to a place where he can only sit in one spot in his wheelchair while everyone else eats and talks, makes me feel sad for him.   So as the years have progressed, we much prefer to arrange for a nurse on at least part of the holiday, and just have it here at home.  Very few of my family members or John's actually come to visit.  It breaks my heart because I am the social extrovert, but I can't put Daniel through the travelling trauma.   So what has happened?  We have cousins, and even a grand niece that we have not yet met. Relatives have just "continued along" and not included us, because everyone just assumes we are not able to participate.

That being said, I have no ill feelings towards anyone related to us, I know everyone has their own bundle of things to do and places to go.  Thank goodness for face book, because I would know absolutely nothing about my cousins in distant states.  I've tried to communicate with most of them, but only three actually reply in any depth.  I have accepted that we are, in many ways, like outcasts, due to the different type of life we live.  It does not mean we are unhappy, but we are limited in what we can do, and where we can go.

So we carry on in quiet. Surrounded by the comforts of home.  Quietly separated from the world where normal "mobile" live  in our limited capacity situation.  Keeping Daniel happy and healthy takes alot of energy.  Ensuring that Sarah and Thomas get as much love and support as we can humanly give them.  Friends in our local community provide so much kindness and love.  If I needed anything, and posted it on line or in the Bee, someone in this town would make it happen.  And sometimes we do small random acts of kindness ourselves, just to give back in some way.

Anticipating the holidays, also brings memories of sadness and loss here at home, so sometimes quiet reflection isnt a bad thing.

Being the Mom of a child who can not speak, or walk, or talk, will forever leave me curious as to what is going on inside his head.  That sparkly smile just melts my heart.

John had a very quiet birthday.  He is ok with that.  On facebook, people go to wonderful Halloween parties, our to fancy restaurants, and have fun time with family.  I would have once loved to get all dressed up and go out somewhere fun.  But nurses leave at 5 on weekends.  That is my reality. As I have come to accept it, I have let go of wanting to do what the "normal free mobile non disabled" world can do, and I have accepted that the quiet love, and necessary care giving is God's calling for me.  I am lucky to have my son still with me.

So it was quiet yesterday, and today.  I will be glad when it is January and we are moving towards the Spring.  I will invite many people to come an visit for birthdays this month, for Thanksgiving, for Christmas, but few if any will be able to make it.  We are not exactly close, or on anyones priority list, except for our immediate family.

Sarah turns 19 and Daniel turns 17 this month.  So much to think about.  We are driving along a bumpy road in an old car, we hit pot holes and big cracks, that is the metaphor for my life.  But we don't stop because we know that our destination is going to be the most incredible fantastic place. And the road will eventually stop being bumpy.

Happy Birthday John.

How Many Days Until Christmas???

Oh please.  I am not in the mood to see the holiday lights up.  If I see one more Christmas commercial on TV I am going to scream.  Its been a rocky road this year making it to December...and the last pressure I need is the societal pressure to spend spend spend...   I look at Daniel...and he can't request a single darn thing. He can't write a list for Santa Clause.  He really just loves the lights on the tree...the cheerfulness of the colors.  Its quite simple really...  he feels the cold air, smells the pine, watches the lights, and still asks for nothing but to be himself.    I wonder why our world has become so ridiculously consumed with spending so money on piles of gifts...  as a kid...  for me anyhow, it wasnt like that.  We lived in an apartment, had an artificial tree, and what we got for gifts...was simple...what my parents could afford.  Now the mall is a panick attack place for me.  And I am trying to avoid the push push push.   I have no fancy parties to go to.  Maybe some cookie exchanges or Angel swaps...  but as cliche as it sounds...  the holiday is about our savior.  Not the destruction of our financial stability.   Really... do people actually buy eachother mercedes benz cars for Christmas???    Really?

I have mountains of work to do for Daniel this week.  Mountains. A visit to the pulmonary group as a follow up after his pneumonia. Therapy...so much driving...  his lift needs a repair now that we got the crazy engine noise fixed.  Battles with insurance over all of his stomach meds.  So much.  So I wish the holiday demons would just go away...  its silly that they push selling cars, then they push getting a capital one credit card, then push buying every toy and appliance out there.

How about some nice warm socks.  Thats not to say a camera, IPAD, new laptop, or flat screen TV would not be nice...  but isnt this kind of a recession??

I have a medically fragile child..and all of those things mean nothing to him...in terms of his own personal want.

We could all learn a lesson from that.   I just pray that I find my holiday cheer this year.  Right now I don't even feel like decorating.  And that is NOT me at all.   I'm more concerned that the pneumonia could come back and when the surgery will happen on his spine...   Thats my reality.  Stupid TV commercials.

Kids who have received Dream Come True CT wishes...we had our dolphin swim and disney trip in 2010... this is the annual breakfast with Santa.  This years is coming up this weekend on December 4...I can't wait.  Its a blessing to meet these VERY special families...

I guess I should start reading more.     Signing off...cheerfully...  Julie