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.
Friday, October 21, 2016
KEEP PUSHING KEEP FIGHTING
sometimes I just get tired. Its too hard. Too much. So much pressure. So much expense. So little money. So tired. So little sleep. I worry that I am just going to die suddenly and things will be a mess and I will just be worn out to survive. So I keep pushing. Keep fighting. This is my life. Taking care of this family. Making sure they are all OK... Keeping those smiles coming.. brains engaged. I lost myself years ago, and have sort of, kinda found myself again. Taking care of another person full time is a lot for the soul to bare, but love can move mountains. And I just want to make a difference in a joyful way.
All I really wanted was to have a house, a family, a simple life. But it would be a dream from heaven if I could go to Ireland to see Sarah for 4 days ( she wants me to) and even though I got my passport, I just have so many expenses. John's hospital bill was $1100 for example. And our deductibles are $5000. It just keeps going up and up. Social security gives me pennies for Daniel, way less than I ever thought he would get. So that doesnt' help. Trying to figure it out. Juggle juggle... no fun, no relaxing, no vacation, just always caring and giving. Sometimes, a person can start to feel really lonely this way. Who do I talk to ? My you tube channel and my therapist, and my sister.
Because I never want John to worry. He's a good man. Working hard, tirelessly. too. The financial end is the hard part. Because if you have to care for a special needs person, you can't work full time, their care is a full time job. But then you can't work. You get to a point where it seems like its all getting set and coming together... and then it all falls completely apart and you have start over,
I would love to sell and move out of the north that is terrorizing my health and Daniel's. But I literally stuck right now. Trying. Pushing. Maybe someday I will open my mailbox and a miracle will happen. I am working on the good karma vibes. But BOY does the anxiety attack you like a swarm of bees every time you check your bank account. Freaking sucks. Then you have to find the positive mood again. My entire life has been a financial upheaval.... what makes now any different.
I guess I'm just getting older. And I have to push even harder and harder and harder.... to maybe someday have some time to relax, and enjoy the sunshine. Do you think it will ever be easier? Anyhow. I have lots of love, and people around who care....no matter how rich we are. or poor.
Daniel is the love of my life, and he deserves a good quality of life. So yes, the career had to go, and this is the life... the way it is supposed to be. I just have to get better. And keep trying. And keep pushing. Thank God my husband loves me.
Please subscribe. I'm trying. I really am. I mean really really really trying.
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