Wednesday, May 25, 2016

Pleasse don't think i'm special for loving my child with a disability.

{My dear readers, this post is not directly related to my life. Our situation has been different from some of the other parents I have worked with or counselled over the years. Although I speak the truth in this post, Paul and I did hear a lot of the same things many other parents heard and had to deal with on a regular basis. For us, our child had an injury so there was always hope of a excellent recovery. We had to deal with other types of comments....ones that were meant to make us feel better but honestly sometimes hurt so bad.}


It happens too most of us parents with children who have disabilities. We hear all kinds of statements "You are amazing, I could never do it." "It must be so hard". "I can't imagine how tiring it must be." "You have so much on your plate, I couldn't imagine the challenges."
We hear it all.

Now I am not writing this blog about my life. So don't get confused or come at me with comments regarding my experiences.
Yes I did hear all of those wonderfully insulting things at one time or another, and at the time it stung so bad. Having had 20 years of experience living my life, today I have learned that those who have said to me "I couldn't do it". Meaning not being able to handle my life, I would have to say I agree. I have grown to see just how incredibly stupid and lazy some parents can be. Eeeeek did I say that out loud?
Today I am able to see exactly how hard Paul and I worked to give our kids the best possible life. Not much stopped us from living a full life. I have seen first hand how some parents just don't have it in them. I truly believe if given my circumstances they wouldn't have been capable of doing what we have done.

I am writing this post because there are many "new" mom's just entering this wonderfully chaotic life of raising a child with medically fragile conditions. Whether it be physically, cognitively, developmentally or mentally diagnosed circumstances. I want you too know that you will hear these words but do not for one minute let them make you feel poorly about your life situation.

Coming in after 20 years of raising a child with a few medical statuses, let me tell you...they mean no harm. They speak too soon without thinking what they are saying..and by today's standards of parenting they are probably right "They probably couldn't do it",

With all that said, for the most part you and I both know if anyone was thrown into our life they too would survive. We were thrown into our lives, without any warning and we are surviving.
We also have to admit, although things can be very difficult and challenging at times there isn't too much we'd change. Maybe we would change a few outside influences on our daily life, but we would all agree...we'd never change our children.

Sometime's their statements are true, we do have extra challenges that most parents don't have to deal with. Looking in from the outside our lives might look a little different from your's. I hope you do however recognize that our lives are very similar as well.

We may have extra appointments, hospital stays, changes in curriculum, health conditions and worrying situations that can change at any time. But we live our lives the same as anyone else. We start each day with a smile, breakfast, morning routines, school, extra-curricular activities, homework, bath time and bed time routine. We are the same, just sometimes there's extra things that need tending too. We love our children and our so thankful for their presence in our lives. I think all us parents with special needs children could agree that we have a little something extra. Its something no one else could understand unless you lived it. The love we have for our children is a extremely powerful force. You can argue that you too love you children more than anything else in this world. But us mom's who give thanks at the end of the day because our children are healthy, in their beds, warm and smelling the sweet scents of bath time bubbles...we never take that for granted. Every single night we sit down at the end of the day and give thanks for another beautiful day that ended without incident. I know for me, that has always been the best feeling.

If I am going to be honest, sometimes these comments made me feel like you felt my child must be difficult to love. That if you were given my situation you wouldn't be capable of loving or parenting my child. Sometimes I felt you were saying that you were fortunate that my child was not your's because that would be terrible or tragic. Now under my circumstances obviously it was tragic, the accident paralyzed my son. He became a quadriplegic at a very young age. Raising him however was not tragic. (Many of those statements came from parents I have spoken too over the years. I have never felt like anyone thought it would be difficult to love my child.)

My advice to anyone who may not understand what a family is going through while raising a child with special needs, is too just give encouragement. We are not looking for pity or praise, we just want you to understand that although we might have more on our plates our life isn't much different from yours. If you were to find yourself in my shoes whether through an accident or cancer, illness diagnosis YOU too would find it in yourself to persevere. It is human nature.

Always remember you are not above pain, suffering and tragedy. It can strike you at any time as well. SO live your life to the fullest, don't take anything for granted and love your life every single day.
Until next time my lovelies, good night and god bless~



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