It's December 21, 2010 and I am so confused. Pulmonary says the oral motor work with food is very dangerous...but GI won't order the barrium swallow study with out 6 sessions of Speech and Language therapy by CCMC's feeding team. Ug. I have decided to send Daniel to school today rather than haul him the hour and a half to Hartford.

Its so hard right now.... these panick attacks and the overwhelming anxiety of trying to get everything taken care of... money is so tight and Christmas is in three days. I cried this morning..but I know somehow there will be a way for me to work in the future.

But for today I have to finish writing out these Christmas Cards and making phone calls to the doctors. There are seriously about 9 big issues with Daniel that I am juggling...not including school.

World...do you know how hard it is to raise a special needs fragile boy? Oh my...I love him so much....but I miss being able to work and make more money. Its a terrible mental struggle I swallow every single day. Help. I wish somehow the pressure could be relieved...just a bit.

Happy Holidays??? Must remember Christ and keep praying.........

FOR GOOD Wicked, sung to Daniel

Daniel has a birthday soon

Today is November 15 and in 7 days Daniel will be turning 13! Its hard to believe how far we have come. Sarah is also turning 15 on the 20th....two years, and two days apart. Saturday was so great, because I took Daniel to the Brookfield Y for swimming in the therapy pool. It was so much fun to see him back in the water.... even though I have to play Mom and Therapist...John was there to help and it made the experience really special.

I'm having a tough time as me...because financially, working is tough given how much I have to do...its frustrating, and frightening...because Daniel's needs are so great. As well as the normal expenses with a home and family. I would still be in a full time role...but things are so complicated...I feel like a crazy rabbit one day, and a caged bird another.

But Daniel is smiling and healthy today...and I know that God has a plan for what we learn through this journey. I can't wait for his birthday... I will officially have two teenagers in my house!!!

Remembering our Wish Trip to florida..june 2010

Thanks to "Dream Come True of Western Connecticut" We went to "Give Kids the World" village in June of 2010. It was the most amazing experience... Give kids the world is a place...a beautiful village....designed for families with special needs children, or terminally ill children...it is almost 100% volunteer run.. really nice villas', and everything there is accessible and wonderful. Parties everyday, a present for the kids everyday...food was provided... and also they give you VIP park passes to all the Orlando attractions.

We also had a gift to go swim with dolphins at "DISCOVERY COVE"... that was the most fabulous part. It was surreal how pretty that place was. I could stay there for a week in a chair and sleep.

Our children were able to enjoy the parks together...something very RARE for a family with a special needs medically fragile boy in a wheelchair. I think I went on just about every rollercoster there was....because I am a rollercoaster NUT....

But the best part of this gift, was just to be able to relax and not worry... at least until towards the end of the week. Daniel had a fever in Animal Kingdom...and I went...from paradise to ambulance ....to hospital. Reminding me of the reality of my life.

Coming home was hard....because we didnt get much vacation or any breaks for the rest of the summer. But that trip to Florida was incredible.... flying was hard (united was not user friendly for Daniel)...but we made it.

Thank you and appreciation for Dream Come True Connecticut...forever and ever and ever. You changed our life this past summer.

November 7 2010

Thank heavens we have nursing today. Daniel had a fever last week but he is turning the corner just fine, so it seems. I am delighted that I have found my blog again. It is a tough battle lately.... just dealing with life. Financially, I have to take what money I can...and do the best I can...because I have a family to provide for. I am really sick to my stomach to have to go back to work at several part time jobs, because I know that the minute I have to run and care for Daniel I am probably going to be fired.

But Sarah and Thomas are both worthy of a good life...and I certainly need my house in order to give Daniel a good quality of life... its pretty much all he has.

Most people simply dont get it. So quick to fill me with their lectures about the way I should do things...but they are not the ones raising Daniel. Living a life here in Connecticut is expensive..and cold.

Anyhow..I am a "hopeless" optimist with depression. Hows that for an oxymoron.

I have to bury a guinea pig today that died yesterday. Again...thank God for our nurse today...because my mood is pretty crappy. The needs here are killing me. But I have to keep pushing pushing pushing... When I am with my kids...I smile for them... they are my reason for living.

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