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.
Saturday, November 26, 2016
Thursday, November 24, 2016
Wednesday, November 23, 2016
Tuesday, November 22, 2016
Sunday, November 20, 2016
Thursday, November 17, 2016
Wednesday, November 16, 2016
Saturday, November 5, 2016
Friday, November 4, 2016
Thursday, November 3, 2016
Monday, October 31, 2016
Wednesday, October 26, 2016
Tuesday, October 25, 2016
Monday, October 24, 2016
Sunday, October 23, 2016
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.
Sunday, October 16, 2016
Friday, October 14, 2016
Thursday, October 13, 2016
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