Anxiety, insanity, and holiday non-cheer

Today is November 30.  And I feel like I am supposed to have holiday cheer. But I am not feeling it.  I don't feel like it.  Typically putting up the tree and "Christmasing" my house is a very exciting time for me. I dont know could it be....

That Daniel has had pneumonia...and this week vomitted and aspirated losing two days more of school. That his scoliosis has me worried because its rapidly progressing. That my list of things to do is so long that reading it makes my heart beat too fast.

Just surviving and staying in this house has been the biggest challenge this year.  And yet still I have managed to hang on.  And my kids are full of brains and talent...  and even Daniel is showing promise on his IPAD...

But its just too much.  I praise you God. I praise the holidays for the true reality of what they stand for. But I dread the exhaustion from making it "happen"...  and I just want to curl up....    I am also NOT enthused about snow after last winter.  It was horrid.  So I'm kind of in an overwhelmed mood.

Daniel needs a follow up at CCMC, and he is seeing Neurology for seizures on Friday.   Spent all day yesterday battling with insurance issues over his stomach medications.  And today I just want to cry.

December 1, 2011 is tomorrow.  And my spirit is deflated.  I need to focus on the beauty in my life and re align my attitude.  How do I do that when I am just so exhausted and frustrated.

Well..today I pulled out my flute and played...  for a while until my mouth hurt so bad...  and that helped me boost my heart alittle.

And take my mind for brief seconds off of the list....  Its a total nightmare.  

Happy Holidays my Butt.   Phew.

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

Happy Thanksgiving 2011

Sometimes it all seems so cliche.  We are so grateful... thank you for everything...  People all say it, but really we just eat a big meal and laugh alot.  But Thanksgiving for Daniel has nothing to do with a great meal.  He can't eat the way we can...his food comes in a tube through his stomach. So he sits in a house full of smells and sounds that he doesn't really partake in.  Its not easy entertaining and also making sure that his needs are met...   But he seemed to enjoy having company.  And we sang Happy Birthday to both him and his sister.  He had a pile of whip cream and a candle in it.  I gave him very very small tastes and he smiled.  He swallowed the first few and then he coughed...  and I never made it to the pudding.

We have had so much loss in our family, and trauma...  that just being together was emotionally healing.  No drama here... no family crisis...  just being.   And that was what I was thankful for.

Daniel's Birthday was November 22, and I promised him his gift from me was a healthier Mommy.  I've been eating to mask my sadness about other things in my life..  and its only detrimental to the strength I need to care for my children.    Pictures tell it all too, don't they.

Sometimes it just makes me sad...to see Daniel in his chair, off to the side...not able to eat, or run and play... he isn't listening to music, or texting friends, he just watches the world quietly.   A different world from what we all experience.

I'm glad Thanksgiving is over.  And grateful that my Mom and Dad helped me buy the food too.    But Daniel's van broke down, and I have to pay that bill too.  At least its fixed so I don't have to freak out driving to the hospital in Hartford.

Christmas is looming...and financially...its a pressure cooker...  But again, if I can just slow down and realize that simple is all we can do.  Then we will accept that.  I have to stay strong for these kids....  And I am truly blessed to have the things that I do.  Thanks to generosity of others...we have enough money now to purchase a generator.   That is just amazing.   Much love to you all....  Gonna drop a few a Thanksgiving shots into this blog post.

Keep in touch...  facebook me...  jhasselberger@snet.net     Happy "black" Friday.  The only thing black here, are the bags under my eyes.

Keep the Faith.. Julie

Happy Birthday to this special kid...

Today...November 22 is Daniel's 14th birthday.  Considering I had no idea how far we would go on this journey based on what the doctors told me...  14 is a great reason to celebrate.

Life has been re engineered around this kid..but its worth every bit.  It certainly could be alittle bit nicer for me, maybe enough money to not to worry and panick, maybe get my hair done..maybe take Daniel on more lovely warm vacations, maybe just have less stress on our family as a whole. Less fighting...less pressure... more love.

But I keep trying. Watching...analyzing...studying...advocating... and everything I do is designed to give this boy the best quality of life that I can amidst the pressures of nomal life.

When I looked at Facebook today... Oh My GOODNESS....the amount of testimony to how Daniel impacts the world is mind boggling.  He is a special special child.  He is my teacher.  I love him...as I love my other children...as equal but unique gifts from God.

Happy Birthday...  Daniel.    Your smile is warmer than the sun.

Love Mommy....

Oh my God.. pneumonia for Daniel

On Thursday November 18 Daniel was breathing well.  He was actually not able to breath safely without oxygen.  Got him to the local hospital they then transferred us to Connecticut Childrens hospital where we stayed until his pneumonia was better.

Sunday was Sarah'Rose's 16th birthday.  And her final performance of Footloose at the Regional Center for the Arts ...in Trumbull, CT...

My brain feels like its going to explode with emotion.  Daniel's scoliosis is worsening.  I didnt do a great job of celebrating for Sarah... although she did get her kitten.

I can't afford much of anything...and yet I'm trying.  I feel like the world is just sucking all the money right between my fingers.

Daniel needs so much.  Sarah has college around the corner. Thomas just wants to be 10 and have a life.

I want to go back to nursing school to fulfill my passion to be able to financially support this team....  its not easy for John to feel that its all on him.

Daniel ...   you scared the hell out of me with this not breathing room air above 90 thing.  I feel like I am so behind.  Behind my behind ed ness.

I wish I could bring Sarah to a broadway show of her choice...with a bunch of friends...and celebrate her 16th in style.  I wish I could plop Daniel on a plane and get him out of germ filled cold and dank Sandy Hook...and go swim where its warm.  I wish Thomas had the ability to have more play dates, to see a real football game......  To all of them...  Daniel is a great joy, but a great burden.  To me...I love him and them all so much I fear the day that it will come apart.

God I pray you will help me.  Help me pay this mortgage.  Keep the old cars running.  Keep the old appliances running for another 10 years.

The big dream for me is to renovate the first floor so the Kitchen isnt a maze of a hallway to get the wheelchair around... make it all open... add a first floor bedroom so I can be near to him.

This time I spent in the hospital with Daniel this week gave me lots of time to think...  and pray.

The damn economy doesnt take into consideration those of us who CAN work, but CANT work because they are at home caring for a child who is severely disabled.  It sucks.

And then the child becomes ill....and everything goes to hell in a handbasket.

Buried in Coupons in Snuggling into sleep

I started clipping the coupons again.  Strategically trying to save every single penny.  And tonight I actually fell asleep and woke up amidst piles of flyers and scraps of papers with the scissors still in my tired fingers.

Its the kind of tired you can't really describe...just pure mental...internal...physical and emotionally exhaustion.  Clipping coupons sent me into a savings induced coma.

I just thought it was funny that I fell asleep...mid clip.   My mind is just so overwhelmed with caring for everyone that it gives in.

I guess that's ok. But the best part of the day...was my 15 minute snuggle in the chair with Daniel...before he fell asleep.  Its magic.  

Its my turn.  This is what it will look like:   OH my friend there...that is Tinker...she is always near me when I'm sleeping.  True unconditional love.  She is a wonderful kitty.

Think Happy Thoughts.... Happy Thoughts!!!

Storm Alfred Booing, and a WTF reaction

So this storm came on October 29th and dumped a ton of heavy snow on our Fall trees, mostly full of colorful leaves still.  All night long we heard crack, snap, and little by little power went out all over town.  Aerial view was probably creepy if you were looking down!


We also got "boo'd" early in the evening...  and it was a bag of goodies...with generous financial donations for Daniel's fund.  About $700 towards our goal!!  It was an amazing gesture.  


Then more snow.  more more more....  The next day was October 30.  And 99% of our town was in the dark. Trees were down everywhere the eye could see.  Miraculously, like in Hurricane Irene... we were the small percentage who still had power.  All we lost was our Cable TV.    I decided that an Angel was sent to protect Daniel since we don't have a generator, and he needs power to eat, have breathing treatments, etc.  


Today is ...November 3.  The kids had no school this entire week.  Much of the town...and state ....still in the dark.   


Sarah told me she feels like we are in an alternate universe. I have to agree.  All that is normal was turned upside down.    How do you cancel Halloween???   


New England got hit hard...again.  Its been a very hard Fall...  my yard looks like "tree limb carnage"


But what can you do except continue on.   I need to keep working on raising funds for Daniel, and looking for a way to get to nursing school.  I have started believing that I need to take care of JULIE.   Storm Alfred woke me up.  Big Time.   Through prayer and a spirit of resilience I am going to make it through my own personal storm here.    I have so many people helping me.  Loving us.  And I love them in return.   Raising Daniel is a giant task.  Raising Daniel in hurricanes and Nor Easters... lol...  alittle more challenging.   

Our Surprise Boo gifts from some very caring Newtown People!!!

Saturday's ride home from our last Football game

Tree limbs snapped off everywhere

This was my Japanese Maple tree...completely bent over

Snow was so heavy you couldnt use a snow blower

Several of these branches eventually gave way and broke

Not a swamp creature!!!  It is what is left of a giant very full willow

All the trees just in an arc shape.  They looked so sad...

Snow before Halloween.

Very symbolic of the strangeness... this giant pumpkin snowman made me stop my car and take a picture!!!

Roads completely blocked off

He (Daniel) never seems to stop smiling.       God bless you all.