Greetings to all ! How has your day been unfolding? I trust that everyone is in good spirits. Today, I wish to share a significant part of our journey. It pertains to Sean's medical condition. Are you familiar with the term ' Hirschsprung Disease '? Have you ever met a patient living with it? If not, it's my honor to introduce you to Sean, a resilient warrior courageously facing life with a colostomy. 🛡️💪
From the moment of his birth, Sean was diagnosed with Hirschsprung disease. Despite the challenges, I am grateful that my child has bravely survived . And now he has a hole in his stomach, and a portion of his intestine is out for him to poop temporarily .
His intestine
Regardless of the circumstances, we adapt and make the best of the situation, ensuring that we have a supply of colostomy bags and micropore. However, there are times when we can't bring everything along, which leads me to resort to DIY . I carefully wash and disinfect his bags with chlorine to maintain cleanliness and prevent any potential contamination. Additionally, I place a soft sanitary pads outside his colostomy bag to provide extra support and minimize the risk of skin irritation on his abdomen.
Thank you ma'am anna for this medical supplies
To maintain cleanliness, I carefully use a barbecue stick and tissue paper to remove any accumulated waste from his drainable bag. However, this method is not recommended by his pediatrician. Nevertheless, considering the challenges we face in our daily lives, I am actively seeking alternative approaches to ensure his cleanliness without causing any discomfort.
Sean has grown accustomed to this routine every day. He is often bullied by his friends like he has a hole in his stomach and occasional leaks that he smells poop . He also comes home crying because he is not allowed to play with others due to the unpleasant odor of his stool. His self-esteem is affected by the fact that he has a colostomy. As a mother, it pains me to see him lacking confidence in himself. He sometimes feels envious of other children who can freely play outside without any worries. However, most of the time, he prefers to stay at home and play on his phone to avoid further bullying.
He also wants to be a vlogger
As he grows older, he gradually accepts his condition. I am grateful that he hasn't let his condition become a hindrance to his education. Despite the challenges, he disregards the extreme hot of the sun during lunchtime just to go home and clean himself to prevent his colostomy bags from leakage . He strives to be independent. In fact, he is an achiever in his school, and I am incredibly proud because he consistently receives honors or high honors. 👏🏻
Congratulations Sean
To you, Sean, I understand that you may not be able to read this, but I want you to know that Mama and Papa are incredibly proud of you. Your unwavering support has been my source of strength during my moments of despair, and you have been the one to uplift my spirits when your papa was imprisoned . You are my ultimate inspiration, driving me to strive for excellence and to give my best, so that we can face your upcoming surgery with unwavering determination. As we promised, your papa and I will go above and beyond to ensure that you can lead a normal life. We hold onto the hope that God will answer our long-awaited prayers for your successful operation this year .
My Treasure
I want to express my gratitude for taking the time to read my blog. I understand that my writing may not provide all the details, and I apologize for any shortcomings. This is my first time sharing about my child's condition, and it is a daunting task to find the right words to convey the depth of my emotions. My tears flow more freely than my fingers can type, as the weight of my feelings becomes overwhelming. Nevertheless, I hope that you can still grasp the essence of the story I am trying to share. Thank you once again, and I wish you a wonderful day.
