This is our blogspot. It is a after the fact recollection of what has happened. Even though we go through trails daily, weekly, yearly of this incident we must keep on. We must fight for our children and we must defend those who are weak and who can not help themselves.
One day I hope to be able to stop long enough to write more on the blogs or maybe even write a book. This is very difficult at times to care for a child with special needs. Their care never really ends. They need you to help them to eat, get dressed, and to do daily activities. It is a continuity of care. Physical, mental, and spiritual. Its all very draining. Imagine being at your job sometimes at its very worst. Imagine not being able to leave it to go home. Imagine that you don’t always have a co worker to help you. The co worker is working another job just as equally as important because you need to be able to live, eat and provide shelter.
Imagine you have another child who may be able to feed, get dressed and care for themselves. They still need care, love and attention as well. Imagine being told by someone very close that you are neglecting your well child for your sick child. Yes, I have been told this. I may not be perfect thats okay. I only have 24 hours a day and I do nothing for myself. I haven’t for years.
Imagine that when you have needs to be met they don’t get met. Everyones needs always come before your. It makes you very tired. Its draining and its emotional and your self esteem is never good enough. Imagine making friends but not being able to keep them because your always making apologies for not being able to call, contact or go out with them.
I had someone from church bring her children over for a playdate and to go to the pool at our apartment complex. Our daughter had a seizure and was a mess. The woman from church and her children and our oldest daughter went to the pool without me or our special needs daughter. I was left alone once again to pick up the pieces and clean the mess. Its a lifetime of it. Until life ceases no more for one of us.
Vacation isn’t even a thought or an option anymore. I recently had a landmark birthday. It was barely an event. It sucks the life out of you.
I continue on. I will continue to fight for my children. I will provide for my children. If you have children with special needs and you have supportive friends and family. Please be very grateful for them. They are truly a treasure. Ive always tried to be there for friends and family. Its really difficult.
Please read and share our blogspot. We are on the road to healing and rehabilitation for our daughter. Please don’t be offended if we don’t answer right away. If we don’t respond to your emails or Facebook messages. Its a rare occasion that we have time for social activity. In fact my social activity is going to the grocery store. Our social activity also includes Dr. appointments, lab work and treatments and therapy. Its common to have therapy for 5 days per week, 6 hours per day with a 15 minute lunch. Don’t forget the 1 hour commute to and from therapy.
This is my life. This is my daughters life. My family’s life.