I am Julie, Daniel's Mom. Daniel has Polymicrogyria. His brain is deformed, caused by a virus in utero. He has seizures, developmental delay, motor dysfunction, severe reflux, respiratory problems,etc He is unable to speak, eat by mouth, or walk. Visual strength and a gentle touch are his means of of communicating. Daniel has strengthened my belief in miracles and faith. Enjoy. Share. Follow. Help. Laugh, Pray, make a new friend.
It really is funny how on Sunday morning when I am waking up before all of my meds kick in, and before coffee, I groan at the thought of getting out the door by 8:30. But once Daniels nurse gets here at 7. And I have guzzled the first coffee, taken my pills, and found some Advil. I start to get a spark.
They say you need church the most when you are fighting yourself on going. I most enjoy when I go with my daughter too, because she is absorbing so much. I love her positive energy and company.
Thomas goes to his teen group and Daniel to Special Forces class.
I typically don't have but 5 minutes to get ready so I'm not real pretty at the 9 am service. I don't mind.
It reminds me of the things I wrote down last week that I said I wAs going to do for sure this week. We will remind again.
I'm surrounded by sarcasm and negative jokes from the minute I open my eyes and the house comes alive. A little peace will do a girl good.
Going to church is not about a duty or responsibility. It's about a relationship. So whether you go once or devotedly it's your relationship with God that matters. He does, however, like us to fellowship together.
Happiness. Happiness. Happiness. Choose happiness Julie. Choose it. Hold it. Don't let it go today.
So. Hi ho, hi ho, it's off to church we go.
Will we make it without anxiety and tension, I don't know. Let me find the Advil because I am stiff and sore
Have a happy day. Find something that raises your own personal happiness factor.
Today started out with me so grateful to have Thomas offer to take the puppy outside. I woke up, said a prayer, found a nice video prayer on YouTube. Meditated for a few minutes. Took my daily pile of medications and went to get some coffee. Typically in the morning, I get up quickly and take the puppy outside right away, then I come in, feed the dog and make sure Thomas is all set. Thomas is pretty independent.
Before I even take the dog out, I always check on Daniel and change his diaper because 99% of the time its a badly needed situation. Today included. After Thomas gets himself on the bus about 6:40am I begin getting Daniel ready for school. I get him dressed, lift him into his chair and if the nurse isn't there yet I will start the meds and prepare the feeding pump for the day.
Today, Daniel was having one of his "bad" mornings where he cries alot and just seems very uncomfortable. The dog, Henry, was wandering the house but I couldn't get him because Daniel was so upset. Then I heard screaming of my name coming from upstairs. I will refrain from the obscenities but the dog had a poop accident on the floor next to Daddy's bed. Of course I was screamed at, did you feed him, did you take him out, do we have any carpet shampoo, get it for me now, you know. It's stressful I guess when the dog poops while you are trying to get dressed for work. But really, why do I have to be the one at fault for every single mishap.
I decided that I didn't care. And kept tending to Daniel who was acting kind of weird. And by that time Henry was sitting at my feet looking kind of sheepish. My gut tells me that when Thomas took Henry out, Henry did not fully do his "business". He probably rang the "bells" on the door but no one was around to hear it. It's not his fault. He is 5 months old.
My day flipped upside down in the blink of a flash and now I've got that sad sick feeling in my stomach again. That "no matter what I do, you will never stop the mean nasty tone and lack of compassion for what you do to me" feeling. And yet, today I have many things to do, including some work for Allstate and getting groceries. That's a laugh.
Daniel was looking a bit bizarre once I wheeled him into the kitchen, just a funny look on his face so I took a video of him. At the end of the video he fell into a short staring seizure, or spell, whatever you call it. I wasn't comfortable sending him to school today. It's good to have video coverage because you can send it off to the Neurologist.
Daniel. I have to get back into the mood I was in, when I first opened my eyes today. As always I check my stupid bank account, its an obsession of fear. AND then I prayed via a prayer I found. Through writing, as I am doing now, I can journey my way back to peace and out of the sad sick feeling that I have. I will take the goodness of the universe and place it in my hands, hold it to my heart and let it warm me and fill my mind with positive thoughts. Positive focus. Positive healing. We all have a choice. Choose Happy? Choose sad?? Choose ANGRY?? Choose complacent? Whatever. As human beings we are actually strong enough to make the choice.
It's not designed to be easy. Sometimes you even need to get some help to "choose" your way, to a better place. But denial locks the door to choice. Seals the deal. Cuts the life line.
I have to call doctors today, schedule things like a sleep study for Daniel and a review of the EEG that we had done recently. Positive results will come from my efforts. I have to do this. I have to push away the mean things, the hurtful things, the anger, the sarcasm, the lack of money, the lack of resources, the lack of independence, and do ALL that I can, to make the light shine bright on the things I have control over. And also turn on the light to the hallway of doors where the keys to resolution can open them up, only if, and I mean ONLY if you have a positive heart and a spirit of faith and optimism. I don't thing negativity ever brings anyone closer to a better life. So, that being said, I'm grateful that I am a positive person.
Shine bright my light Lord. Please keep my spirit and my faith strong. I am only a 47 year old woman. Not anything more. It's your love that makes me strong and special.
Dear God, You will hear my prayers as I go to sleep tonight. I pray Lord that you guide me into light. Please provide a miracle, a life line. Open hearts and open minds. New beginnings. Wounds to be healed. Please please secure my home, my cars our home. That we may safely provide and care for our children...and have a place to raise them without constant fear and worry. Bless my Daniel, that he will have yet another restful night without seizures and will wake happy.
Help me be a good mother and a good wife. Take away pain and replace with perserverence. I need to step out on Faith Lord. And I am stepping out by asking for your help.
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