The Caregiver: Secrets, Strength, and Courage
The Caregiver; Secrets/ Strength/ Courage – I can personally tell you, there is nothing worse than to see your child suffer every day of their life. To hear their screams and to see their tears flow out of control, as their mother you feel helpless. However, you are not allowed to cry with them. You cannot show weakness and you have to maintain the sanity in your world that has gone insane.
Before my daughter, McKenzie, developed RSD/CRPS our world was normal. The everyday problems that seemed big at the time are nothing to us now. We would do anything to go back to the pre-RSD days where trying to find rides to basketball practice and school seemed to be the big problems. Better yet the problem of everyone agreeing on what movie to go see. Today, the thought of playing basketball is a thing of the past and after all the medical bills are paid there is no money in the account for a movie. As a caretaker, you lay awake at night worrying how you are going to juggle things around to pay the next doctor bill. Most parents know when you have children you give up a part of yourself every day from the minute they were born to protect and provide for them but, when your child has developed such a horrifying disease and you cannot protect them from it, well you feel lost as a parent. You find yourself transforming from what you once were. Your attitude and personality changes every single day, you find yourself fighting with your own personal demons to stay positive and fighting to stay strong so you can be strong for your child.
To say that I am bitter, is an understatement. I am not only bitter, but I am hateful, frustrated, sad, scared and live in a constant day-to-day state of never-ending worry about the welfare of my daughter. I am bitter at all the doctors and healthcare personal that we have seen who have made my daughter cry and treated her like she was something less of the beautiful woman that she is. I am bitter that a dog or cat going to the vet receives better care and attention than McKenzie had at some facilities. I hold such hatred in my heart for all the ER doctors who looked down at my daughter screaming in pain, as tears rolled down her face and said there was nothing they could do for her. Yet continued to lecture me on the use of narcotics while they had no idea what my daughter’s disease was, because they keep pronouncing it RDS instead of RSD (FYI not once did we ask for any type of narcotic when we went to the ER, we asked for HELP!). I am sad because I see my daughter suffer day after day after day. I am scared that her RSD will one day spread and her current doctor will one day not be there (Dr. Frank Lee Westchester Pain Center is the most wonderful and compassionate doctor-he will be discussed in another post). We have fought so hard to get where we are today. Her present day doctor has changed her world and if by some reason he is not there, that would be devastating. I worry everyday about finances, health insurance, medication, college, etc… Everything that is an everyday worry for most people is magnified by 100% for individuals with a chronic illness and their caregivers.
However, as a caregiver and a mother, I have to be the strong one! As parents we are the ones that hold it together for our children and are the ones to assure them that it will be okay. We do not show weakness or fear. We show strength and positivity. We have no other choice! The days when we feel like giving up, when we feel things cannot get any worse and well… they do, when we have heard hours of endless screams of pain from our children; we reach deep down inside and find the strength not to give up and find the courage to fight. We fight for our children!
When I lay down at night, after everything has calmed down for the day. I lay there and the thoughts race through my mind. I wish more people could have a better understanding of what caregivers go through. However, until others go through the worries and constant fear of the unknown, one can never understand it fully. Some people who see their loved ones suffer on a day-to-day basis cannot handle it. They run. They hang in there for a while, however, the stress is just too much. I can assure you that the love I have for my daughter will supersede my fears. Because of my love for her; she will always have an advocate, a fighter, a mother, and friend through this horrible disease. If I have to cry alone at night because I have to be strong for her than so be it.
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