Let's get real here for a second, I am going to say it, I am going to let you in on a secret of mine, I suffer from depression. There I said it. I have suffered from depression for a long time, and though it is something that I control pretty well, it is something that is a real part of who I am. I feel that society has put a taboo on the word depression and has turned it into something to be ashamed of, rather than seeing that it is a real thing that doesn't need to define people, but rather is something we need to address and get help for, because it can be managed and controlled. It doesn't mean we are crazy, it just means that we have something going on in our brain that is a little different than others. We need strive as a country to make it less of a negative thing, so that people will be more open and honest about it and more willing to receive help if they need it, rather than ending their life because they felt helpless. Our society has become a society of fakeness, for we don't want people to see the real us, we only want them to see the prefect us, the happy, nothing goes wrong in our lives us, and there is no such thing as a prefect or normal life, everyone has baggage and everyone faces problems and challenges. But when all we see is perfection being portrayed, it is hard not to fall victim to feelings of inadequacy and depression. And the more we come to realize this the better off we will be. There is an epidemic amongst ourselves of feeling like we have to compete with each other. We find ourselves comparing who we are to one another or comparing what we have etc., then we feel bad and get depressed that we are not that other person or have those other things. We need to come to the realization that we are who we are for a reason and we need to learn to love the person we are and embrace that person and get help for that person if needs be, whether that help be in medication, diet or in finding a sense of peace through religion or something else. For once we start doing this, we will start to see that we become more open and honest. We will start to see the depression go from controlling people, to not having a huge impact on their lives. We will then start seeing people for who they really are and love them more and which will lead us to serving each other more because we have grown to love ourselves and others, and we have learned how to truly let people in and see us for us. Just maybe if we can all do this, we won't feel so lonely, rather we will see that others are going through the same HELL we are or at least something similar to our personal hell and therefore start supporting and helping one another through this tough journey called life. For it is hard and no one should face it alone. So, Let's help each other, let's lift one another and let's grow in love for ourselves as well as love those around us. Sorry I will get off my soup box now, I just felt strongly that this is was a good video to show, because I believe more people suffer from depression than we realize and I want them to know, they are not alone.
As for my day, it was a pretty typical day, Payten had Physical Therapy, which she has not been fortunate enough to do for almost a month now, due to her seizures and I had hope that she would just pick up where we left off and go. I am sad to say that we had no such luck. It was actually quite the opposite, Payten has regressed so much, she can barely sit on her own right now and it breaks my heart to see, because that was an accomplishment she has mastered for a little over a year now and I do not know if this regression is from the seizures or if this is from her diagnosis/disease.
GTP cyclohydrolase deficiency, is a metabolic brain disorder, which attacks the brain and the brains neurotransmitters. Most children who suffer from GTP, do not start showing signs and symptoms of the disease until they are much older, between the ages of 8 to 10, but in Payten's case she started showing signs right at birth, which tells us hers is the most severe form. Which that form, does not respond well to medications and therefore eventually the disease progresses to the point of causing children's bodies to shut down and eventually die. They start losing simple functions, such as walking, sitting, talking, etc. to things such as their eye sight, hearing, or worse liver or kidney function. So when I see Payten regress like she has, I can not help but wonder if this is the beginning to the nightmare of GTP or if it is just seizures and we will soon be back to her baseline and more willing and able to get her to function properly?
I guess I will not know until we have tried everything and we either see no improvement only regression or we do see improvement and accomplishments, one or the other is going to happen and we just have to sit on the sidelines and wait and see what unfolds before our eyes. As hard as that is I am going to keep the faith that if Payten could sit up and walk with assistance, that she will be able to get there again whether it be from the seizures or the GTP and we will keep moving forward with faith, doing what we are doing in hopes that it is just the seizures and eventually all these things she has been able to learn and do, will come back to her.
However, with that said, there will come a day, where that is not the case, for the GTP will over take her body and then the only choice we will have is to watch our daughter slowly die, so even though it may become a triumph now and she may get all her functions back, eventually it will not be one and that will be the hardest part of Payten's life. For now will just keep doing what were doing, enjoy our time with this sweet angel. She did have another accident today, where she hit her head again, which caused her mouth to bleed, but luckily not as much as the other day, still it makes me and we need to find her help and fast so that this doesn't keep happening to her. These seizures are destroying her, but like I said it is going to be a long road that we have to go down until these seizures are controlled and I just need to be patient. Tomorrow is a new day and Joseph and I are grateful that it is Saturday, for it has been a long and tiring week and we need a few days off together as a family. Good night. Below are some pictures of Payten after she hit her head/mouth today, the good thing is her nose is healing up very nice, the bad thing is this accidents keep happening due to seizures,
No comments:
Post a Comment