Ok I am SO tired of so many things, for one, people who do not have children with disabilities DO NOT understand at all. I am so tired of people telling me how upset and disappointed they are in things my children have done. All I have to say is walk a mile in their shoes, be in their minds, and try to function. Live in there bodies and feel what its like. Do you really think they understand and know what they are doing at the time? NO. Do you really think they are hurting your feelings purposely?? NO. People need to either ask or educate themselves more, and stop the judging.
Another thing that REALLY gets to me is this : You need to have alone time with you and Barry, you need to get away, you need time together. Ok for one, that is IMPOSSIBLE as who would look after the kids?? Oh sure i have had people say they would BUT I know for a fact that would not work out well at all. No offense but, if you think its going to be a walk in the park well think again. For one it would TOTALLY mess up routine, for two, you would not know what to do when a melt down happened. And for 3 some have NO idea how busy our life is. Thats one reason and the other one is lack of funds, we can’t pay for a vacation with buttons and a smile fokes.
I have a job that is 24/7, I put my kids before myself as they need me and their Dad in order to live, they are unable to take care of themselves, they can not handle change. Barry and I don’t need some expensive vacation to reconnect. As nice as it would be, we know that is not going to happen with the life we have unless we take the kids with us.
We excepted the fact a very very long time ago this is our life and to be honest we would not CHANGE a thing. We spend time together in other ways, we ice fish together, we have our time when the kids are in bed, we spend time together, we talk all the time. In the summer we camp, the kids wander off where we can see them and we spend time together. And to be honest we are so tired most times that we just enjoy curling up on the couch and watching T.V. The fact is that we have a very busy, draining life and we cant change it, these are the cards we have been dealt with and well you manage, you cope the best you can. Taking trips, going away is the last thing on our list. We are in this life for a very very long time, we have accepted the fact that our children will probably live with us for the rest of our lives, there may not be weddings, grandkids, etc. But we are not looking that far in the future, we live one day at a time, sometimes one moment at a time.
All we ask is that people are happy for us, we are happy, we have a life that we have made and we are truly happy, content, peaceful. We are so tired of the judging, assuming, the remarks. If you don’t understand then ask, if you still don’t understand then don’t say anything at all. I know I am doing what is right for my family and we know we don’t live a “normal” life, what ever that is, we are not like others, we are ourselves and we are happy. We have amazing children who love us, who are caring, helpful, respectful, and sometimes they have there moments but we all do, they need people who have patients and understanding, not people who judge everything they do or say. I have a very awesome team of people who help us as much as they can, from various organizations, Physicists, Doctors, Case Managers, Counselors, Teachers, Family and Friends, that understand, listen and support us anyway they can and thats all we ask for in life. We get so much positive affirmations from them and that’s what helps us to keep on, and keep positive. That is what we need in life is people who understand, who support us by there kind words and positive thoughts. We HAVE to stay away from negative people, and negative thoughts, and negative words as we have a lot on our plate to deal with everyday and those things are not part of our lives. We can not be part of people who bring drama and negativity that they cause them selves. I know everyone has things in there lives that they are going threw, but when its things that you can not control that is different. When it something that you can change to make your life and others around you better than change it. We cant change our children, we cant change the cards we have been dealt with, but we can control and change the environment and the people in it. We are and have done so as we cant afford to have our children subjected to negativity as they already have a hard enough time as it is. We need people who are going to support us and bring positive energy around us.Life life to the fullest, change your prospective on life, change your attitude towards life and think positive. Those who do positive things will happen 🙂
Have an awesome day and do something nice for someone today, weather it be a phone call to an old friend, a positive note to them, tell someone what they mean to you, take a family member out to lunch, go visit someone. Do something for someone today as you have no idea what how much that will mean to them. One positive thing can totally change how someone is feeling. xox oxo