Raising Daniel Hasselberger, a journey with Polymicrogyria: What's new and all that jazz for today....

Sarah Hasselberger Graduiating June 22, 2013 from Newtown Highschool

Today is Tuesday, March 26th. Every day I have a reminder on my phone that says "Daniel Blog done today?" And with all great intention I do wish I would get in here. But here I am. It is a TOTALLY gross gloomy day. Sky is gray. Trees, gray. Ground, gray and mucky. Spots of dirty snow here and there. Chilly outside and damp to the core of my achy bones!

Daniel is one hell of a spectacular miracle child because I really can't believe how healthy he is now after all of the December trauma with the surgery, and the Pancreatitis. But he's been released to standing again. And the goal, my goal, our goal, is to get him gradually more mobilized again. How exactly depends on how this new spine of his reacts and responds. But his legs are weak.

So. Many many many many doctors appointments lay booked on my calendar, which can be very stressful to navigate around the other things happening in the Hasselberger Family life.

Sarah and college. She has been accepted at several colleges and her favorite at the moment is Hofstra. My favorite for her as well. But even with merit grants etc we still have a large out of pocket expense. So I am sitting here looking at a giant pile of scholarships. Praying that its all going to come together. She is bright and shiny this girl. So smart, working so hard all of the time. School work, singing, dancing, viola, acting and all that jazz. She is leaning towards a major in business and drama. Maybe a minor in musical theatre?? But its not completely decided yet nor should it be.

It's a strange thing, watching Sarah get ready to go off to college, and knowing that Daniel would have been just two years behind here. He seems so much younger than his age.

I'm confident that if I bust my ass just alittle bit more I will be able to swing it. Thank God for college savings plans.

Gosh its so gray. Depressing really. Sandy Hook is depressing right now. I can't say its easy to "find a happy place" around here. People are trying, so much kindness. But it is eerie here. And sad. My neighborhood is the part of town where several of the angels lived. Its also where the killer lived. That does something to your mental state. It is unavoidable.

Well, I have to get back on track with search for grants for Sarah, and continuous searching for help with Daniel/home expenses because I can't work full time. Even when and if I can, I have been out of the workforce for so long that my MBA and all of those years of HR expertise and ignored. That too is unavoidable and frustrating.

I have a dream. My dream is this. Daniel has a financially secure home and all that he needs with NO medical bills for him and the family. AND also in that dream is watching my children go to college and make a life for themselves. They have had a challenging life. Alot of pain and struggle. But alot of love.

And when time goes by a little bit more, Daniel is still here with us. Should we ever be able to retire, he will be with us. Ensuring that his life is accommodated for... also part of that dream.

It's an uphill battle. I am fighting off the demons while I climb Julie mountain pushing a wheel chair. All I know, and what I believe is that God has a wonderful plan for us at the end of this uphill journey. When we get to the top we will have a lifetime of accomplishment to look back down upon. All of these challenges, as hard as they are, are life lessons. I have faith. But when it is gray, and gloomy. And your body hurts because you are ill with fibromyalgia and too exhausted to care for yourself, and the pile of bills and lists of things to research and advocate for keeps growing... well ... it's hard to see the blue sky through these gray yucky clouds. But its there. I believe that the Lord will provide. I don't know how that will happen, and it can't be on my request, but He will.

Maybe today the blue sky will come out. Maybe today I will get a slap in my head that says..."Julie start exercising". Maybe today something unexpected and horrible will happen. Unexpected and horrible, is not just a concept in Sandy Hook anymore.

Sometimes I just want to get in my car and drive to the ocean. And sit there all day staring at the sea. Just daydream and let life give me peace.

That's today. A Mother's journey. Onward to a fragmented myriad of tasks and to do's....all of them for my children. I am not a good climbing point on Mount Julie. It's a slippery slope and I have no tools or security other than putting my arms out in faith while Jesus throws me a life line.