Raising Daniel Hasselberger, a journey with Polymicrogyria: February 2014

Sometimes I wonder what it will take for me to flip the trigger and push myself even harder on all things. I feel too complacent. Tonight I watched "my 600 pound life" and I was mesmermized by how those people struggled. I certainly know that I have to lose some weight. But I relate on the issue of food addiction. I guess I just have to keep trying.

I'm suffering from extreme nauseau and migraine headaches at the moment. Since about 5:00 ish I have felt sick.

It's no picnic.

The air is bitter and another Nor Easter is set to hit tonight. I am hearing about a foot of snow? It's life in the winter world. I suppose we just have no choice but to cope. Find the fun in it.

I just really want to feel better. It's been months of feeling ill, feeling nauseau, the fibro pain, and horrendous headaches. The doctors send me round and round in circles.

Daniel and I will have our day tomorrow. As there is no school. Then in Friday I take him to Yale Children's Hospital for an appointment with endocrinology.

And the calendar is full of appointments and therapy all being juggled and changed because of the recurring theme of "winter storm warning"

I'm cold tonight. My boys are all sleeping like babies. John, Daniel, Thomas and Henry.

Winter really is a reflective sort of month. But it imprisons you as well. I stepped out and joined the gym club 24. But I have not gone yet. What is wrong with me?

For tonight, as the cold air takes it's grip, just remember to keep praying. People need prayer this time of year, it can be a real downer.

Me? Julie Mother ? I know in tired when my eyes keep closing while I type this.

I am so busy all day that sometimes my mind goes jumbled. It's a new day saeaZ. I'm CCDs. That nonsense was the result of my Klonopin kicking in to put me to sleep.

Today, is February 7, 2014

As a Mom I am often finding myself
in a flurry of thoughts, ideas, concepts, things "to do", etc when the morning coffee has ignited my awake circuits. And then the day hits in all its glory. Get in the car, go do this, go do that, get back home, walk the dog, train the dog, make phone calls, clean dishes, laundry, get Daniels laundry done, make more calls, and then kaboom! That ignition switch turns off and all of those wonderful little creative animals scurry back into the crevices of my brain to hide away until I can handle thinking of them again.

I get tired very easily. To be a busy Mom is a giant job in itself. And then to be a Mom of a 16 year old boy with a deformed brain, seizure disorder, gtube feeding schedule, daily therapy routines, nursing, doctors appointments, diagnostic tests, equipment, medication, and endless worries puts me right onto the ledge of "how much more can I take?"

I can't believe its February already. I truly do not understand where January disappeared to and honestly think there is some kind of cosmic conspiracy going on. Then again, my memory has been questionable and my focus right there with it. Those moments frustrate me when I see people in the grocery store who I definitely know and yet can not for the life of me remember why. Usually hours later it hits me, OH YEAH, that's Jonie Smith, little Johnny's Mom from baseball 5 years ago.

February has been walloped with snow this year. This week as a matter of fact and that has been nothing short of a giant white chilly blanket of depression. When you have a 4 week long sinus infection, and chronic fibromyalgia, the cold just stabs you like knives leaving you longing for a hot fire in the woodstove and someone to hug you.

Its been cold too. Not just normal winter cold but "ouch" the air hurts cold. As I walk the dog along the trails we carve out for his little legs in the snow, the one thing I always notice is how brilliant the stars are. Beautiful really. I think it is the silence and the lack of leaves that makes the stars more pronounced. Tonight the moon looked about half size and the snow was almost blue. No need for a flashlight. My point, you ask? By finding and holding onto the beauty and peacefulness I am able to sustain myself for the 5 minutes or less that I allow little Henry to pee or poop. His feet get too cold.

February is suddenly here spitting out red hearts and chocolate displays for Valentines day. On my desk of mess, lies a fold called "blessings basket". Its pretty fat at the moment. It contains copies of checks, cards, gestures I've jotted down, and basically everything and everyone that I want to thank. People who have blessed our life with their kindness and loving gestures back to December, maybe even all the way back to Daniels WONDERFUL Birthday Card shower. Each time I go into CVS or Big Y I look for pretty thank you cards, and pick up one or two. I have lots of little kind words pop into my mind, and have so many things to say. But I can't even get myself to comb my hair every day. Getting through this blessings basket is now my biggest goal. I saw a billboard today with someone I know advertising their business, and thought to myself, wouldn't it be nice to just put Daniel's picture up there and say "THANK GOD FOR ALL OF THESE WONDERFUL PEOPLE WHO CARE ABOUT US"

Was it a pastor at church that gave a sermon about gratefulness that just stuck in my brain of molasses and fleeting thoughts? Probably. The extremely important reality is the actual grateful heart that is inside my achy body. Very grateful. As I am writing this very blog, I wish I could record the sound of Daniel laughing hysterically on the monitor. He is just happy, and looking around, like a silly teenager having a giggle fit because they are just so exhausted. He has been strong this winter. God's hands have held him with love and protection because not a single cough or fever has presented. I am so grateful.

There have been some spectacular miracles in my bubble, or on my "planet" this year. Many of those miracles are simply people right here in Newtown and Sandy Hook. People who read my words and realize that they are simply an expression of the love I have for my family. It is difficult beyond measure to raise children like Daniel. Some people have a hard time accepting help, accepting kindnesses from others. But I know that God calls us to care for eachother. Kindness counts and being thankful counts. Through caring for others and through receiving care the concept of kindness is nurtured. It is those who have least that often want to help others. A thankful heart will do that do a person. Many people just turn a cheek, because they have their own world to look after. Each one of us has something. A sick relative, financial problems, loss of a job, and the list is endless.

I am digging deep for the words here to express the fact that God gives so much to us. He blesses our lives with each other, with this place we live, with the food we eat and the clothes on our backs. Who are we to hold onto everything and turn away from each other when there is need? I do not just mean giving things, I mean giving of compassion.

Daniel is a challenge for me. I am 47 years old and I have dedicated my life to provide him with a life. I am blessed to have him and he deserves my undivided attention and care. All of my friends out there also with severely disabled children will nod a giant virtual nod when I say that the world does not help those who sacrifice themselves for the sake of others. The money is sucked away from some big greedy money vacuum. The cost of what medically fragile people need, and the stress it puts upon the families causes the unraveling of many families. Sometimes there is barely money for food and gas. Other times there is such lack of sleep and illness on my shoulders that I can't function. There certainly are many days that I just fall down to my knees and pray to Jesus that I can't do this on my own. He tells me to step out on faith. I know He is with me. The spiritual world is all around us. We can see more miracles with a heart of gratefulness. Try listing the things you are sincerely thankful for. That list will start with superficial things, and as you go on and on it will evolve into concepts, feelings and emotions. Suddenly you find yourself thankful for someone who you have never thanked!!! By thanking them, the karma is fed and miracles can continue.

To end with a moment of thanks, my friend dropped off a bag full of frozen home made soups today at my door step. It may sound crazy, but it was very exciting for me to have so many home made soups. I'm not the greatest cook. But many hands made them, and I think that there is some beauty in that generosity.

We will continue on in the difficult journey. I know that my pile is high and my burdens are growing. We don't know where life will take us, because there is no savings plans, or retirement programs, or plans for the future. There is only tomorrow. If tomorrow Daniel stays healthy, happy and engaged in life. Then that has to be enough. Anything extra is a bonus. We will probably never have that new kitchen, or leather living room chairs, or get rid of the 1970's wall paper. But its only a physical house. As much as I struggle with want, I aspire to being a person who is much more eager to give. and to thank others.

Tomorrow I will try that Tortilla Soup. Sounds delicious.