Amanda Rivera: Be grateful for everything.

Reality has hit! After five years of having a son who has Eosinophilic Esophagitis I have realized many things about life. Life is too short to worry about the little things. I am reminded each time we end up in the hospital how precious life really is. This is the time of year to be thankful for life and all that it has to offer. 

We tend to take life for granted sometimes. I know I definitely do! Life is a precious thing, we are lucky to be happy, healthy, food in our bellies, clothes on our backs and a roof over our heads. There are many people in this world that don’t have anything. I tell Tristan that even though he has to go through so much at such a young age he is strong and he should be thankful for what we do have. I know many children that have Eosinophilic Esophagitis and they are strictly tube fed, no safe foods at all. Tristan is lucky and I say that to myself every day. Things could always be worse. I do not want anyone to feel sorry for our family for having a special needs child. This does not and will not define us as a family or even Tristan as a person. 

Tristan has been having more bad days than good, he has been getting upset more often and having more melt downs. I know it is hard for our five year old to understand life and to always be happy. He usually is such a happy child and I miss it. As a special needs parent I try to guide him in the right direction. I want him to live a happy and healthy life and as his mother and his advocate I have to do anything I can. I remind my boys all of the time that we need to be thankful for what we have in life. I want them to know that life is a gift. 

Think about what you are thankful for, not only for this time of year but for the entire year. When times get tough think about everything that you have, your families, friends, food, a place to live, clothes, etc. Realize that there are people without a place to stay warm in the winter, food in their bellies, clothes on their backs, or even their health.

My point of this post this week is to be happy for everything you have and the bad days will not seem that bad anymore.  

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Miranda Smith on Chronic Illness

Janiyah was my biggest baby that I gave birth to and now she is my smallest child right now. Ever since she was 2 months old she would get bronchiolitis. She would get it once a month up until she was about 8 months old. Then two months later she got walking pneumonia for the first time that took three rounds of antibiotics to clear up. When Janiyah turned 5 months old, she was hospitalized for the first time for five days because she got the flu and got severe bronchiolitis as a result. Now she only weighs 18lbs 9.5 oz at the age of almost 14 months. We are going through testing trying to figure out what is keeping her from growing on top of why she is getting so many lung infections. As a result of her health, I cannot work. This puts a huge damper on our finances, but if she goes into daycare, it could give her a serious lung infection that in turn could kill her. People don’t understand that she is as sick as she is because she is not sitting in a hospital 24/7. A child does not have to be constantly in a hospital to be considered a special needs child who gets chronically ill. It can be frustrating as a mother watching your child suffer time and time again because she keeps getting sick. I am praying that they can figure out what is causing all of this to be able to help her better