Trees of Care from Sandy Hook Brownie Troop

Special Trees From Special Girls

Back in December I was approached from the Mom of a Sandy Hook Brownie Troop.  It was in response to an email I had sent out in hopes of raising money for Daniel's Fund and to help support us through his Spinal Fusion surgery.

Well, as we all know here, Daniel became very ill after the surgery and we were at Yale for 34 days, until January 11th.

The girls wanted to get together as a group and create a tree of caring.  Well, they sure did, it was a tree times two!!   On Friday, February 1, we finally found a time to connect and the trees were delivered to Daniel/us.  It was more than just a nice gesture!!  The trees were intricately decorated with handmade ornaments, many made very cleverly with colorful duct tape!!  They were also covered with gift cards and money rolled up.   All things that will help us, and help us care for Daniel. The lights on the trees really cheered Daniel up.  He was fascinated, he loves Christmas lights. 

I am so grateful for the kindness of others.  My goodness, the hearts of these girls are so big.   Hopefully we will all get together soon so that they can spend some time with Daniel.



Raising and caring for a complicated and completely disabled child is pressure and stress that goes beyond description.  And when you have committed to loving and caring for that child it doesn't ever stop.  Daniel's needs go on and on.  That is why I hope to build a fund.  For his future too.   We are getting older, not too much older!  But I think about him now that he is a teenager.  Needless to say, he will be with us until whenever or whatever happens to make that impossible.   And that is going to be an extreme "burden" even though I don't consider it one. Not in that sense anyhow.  I adore this kid, he is just so amazing.

Being able to give love is a great way to learn how to love.  If that makes sense.

Today, February 5, 2013 it is snowing gently outside.  I'm sitting here in quiet peace just writing and reflecting. 

Life is a rollercoaster...  and right now, I'm just sitting and waiting for the ride to begin its ascent again.  Because it will.  It always does.

Super Bowl and how has life been?

Today is February 4, 2013

Well, the Ravens won the SuperBowl last night.  And in the above video the Sandy Hook School 3rd and 4th grade chorus sang at the Superbowl with Jennifer Hudson.  What an amazing thing to see our kids in front of the world like that singing.  They didn't look one bit nervous.  It was a tearful moment with so many mixed emotions. 

Being in Sandy Hook right now is a daily battle of keeping the smiles going.  There are stars all over the town nailed to the telephone poles and they have words on them like "dream, hope, joy, keep going, peace, love, family, care, inspire, laughter, live, give, be happy, etc etc"  And you glance at them as you drive around town for a brief second of inspiration.


Daniel went back to school full time last week, January 29th and so far he has been doing very well at school.  He did not catch the flu bug that rampaged our house... He is very healthy.  The only real concern are periods of time where he seems to suddenly be in extreme pain and we simply do not know why.  Spasms maybe?

I feel like I am in a place where the walls are squeezing me in...  trying to do all of Sarah's college stuff... is a handful. But managing Daniels needs is a full time job.

• Call the Gi
• Call the Orhtopedic
• Sleep Safe Bed is broken
• Issue with several prescriptions
• Nutrition consultation is needed
• New Bath Chair
• Repairs to ceiling lift
• Bills.
• IEP goals and concerns
• New Wheelchair consultation
• Pulmonary clinic
• Work needed on his teeth
• Eye doctor appointment
• Neurology appointment
• Did I mention bills.
• Adding up all of the medical deductions for the taxes
• Appointment to Physiatry
• Endocriniology follow up
• Needs a regular physical too

That is just part of the list I have to follow.  I feel like a lunatic because I am so stressed out.

And well...that is just life.  A GIANT GIGANTIC LIST.  Not including normal things that a family has to do. 

Life has been ok.  Thomas and John wanted the Ravens to win the Superbowl and they did.
I just enjoyed watching the whole thing in general.

But when I look at Daniel, every time, my heart floods with love.  My floods with stress, I have to take care of him, I have to provide for him, speak for him, do everything he needs.  And he just looks at me with those sweet hazel eyes.

My life as Mother is so multi faceted and fragmented that sometimes I just shut down when what I really should be doing is going faster.   But I am only human.  I have my breaking point too.

Now I have to go and force myself to go to the gym and get out of my house.  The piles of paper are like ghosts just taunting me and making me tired.

One second at a time and I pray someday things won't be so complicated here.