Hi everyone! I asked Mailyna to blog about a tough topic for her. I asked her to write about how she thought other people felt about her beta thal or how they would react to finding out. She didnt write much this time because her mind was jumping from topic to topic, but what she came up with is below.
"I have a condition called Beta Thalassemia. Sometimes its hard to tell other people about my condition. Sometimes I think that other people might think of me differently then other kids. I think my friends wouldn't be my friends if I told them about my Beta Thalassemia. Sometimes when I think of that I cry, but then I think of happy things. Just like when I went to Knott's Berry Farm in L.A. with my dad and my sister. Also when I'm sad I look at my favorite pictures I took before when I was little like my baby sister who is 3 years old. To me I think that with my Beta Thalassemia I can't do so much things like soccer, karate, football, and volleyball."
- Mailyna
The heartbreaking thing is that we try to keep her activities as normal as possible & but there are limitations. She has a port-o-cath in her chest that does need to be protected, because its connected to one of her main arteries. I've never tried to hide her blood disorder from anyone & freely open up about her condition to anyone who inquires because its something that is a part of her life & ours. Everyone that we've ever spoken to has been supportive & loving, which is a complete blessing!
Shes a strong kid & deep down shes got all these insecurities. And to be honest, the odds are stacked. She's a 9 yr old girl, that has divorced parents, and has a genetic disorder. Every aspect adds separate difficulties. She isn't the average kid... she's better! She has at least 4 different Christmases to look forward to... 2 sets of parents, 4 grandparents, a gazillion other family members to cheer her on in whatever she does! Life is full of ups & downs, but Mailyna is truly blessed to have the support system she does & to be living in a time and place where she is able to receive the proper care to manage & maintain her life.
Lets give her some reassurance & encouragement folks! Please feel free to subscribe to her blog & leave tons of comments! Thank you again for the support!
~Mia
"I have a condition called Beta Thalassemia. Sometimes its hard to tell other people about my condition. Sometimes I think that other people might think of me differently then other kids. I think my friends wouldn't be my friends if I told them about my Beta Thalassemia. Sometimes when I think of that I cry, but then I think of happy things. Just like when I went to Knott's Berry Farm in L.A. with my dad and my sister. Also when I'm sad I look at my favorite pictures I took before when I was little like my baby sister who is 3 years old. To me I think that with my Beta Thalassemia I can't do so much things like soccer, karate, football, and volleyball."
- Mailyna
The heartbreaking thing is that we try to keep her activities as normal as possible & but there are limitations. She has a port-o-cath in her chest that does need to be protected, because its connected to one of her main arteries. I've never tried to hide her blood disorder from anyone & freely open up about her condition to anyone who inquires because its something that is a part of her life & ours. Everyone that we've ever spoken to has been supportive & loving, which is a complete blessing!
Shes a strong kid & deep down shes got all these insecurities. And to be honest, the odds are stacked. She's a 9 yr old girl, that has divorced parents, and has a genetic disorder. Every aspect adds separate difficulties. She isn't the average kid... she's better! She has at least 4 different Christmases to look forward to... 2 sets of parents, 4 grandparents, a gazillion other family members to cheer her on in whatever she does! Life is full of ups & downs, but Mailyna is truly blessed to have the support system she does & to be living in a time and place where she is able to receive the proper care to manage & maintain her life.
Lets give her some reassurance & encouragement folks! Please feel free to subscribe to her blog & leave tons of comments! Thank you again for the support!
~Mia
Mailyna is one of my heroes...it might be hard for her to understand now, but in just a few short years, she'll come to understand how amazing she really is!
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