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 .
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.
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.
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. 👏🏻
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 .
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.
Stay strong for your little warrior maam. Praying for a complete healing to Sean 🤗😇
@digdeeper2 Thank you so much for your kind words and prayers. Your support means the world to us and gives us strength during this challenging time. We are hopeful for Sean's complete healing. 🤗😇
get well soon kiddo
@restlessadvntr Thank you for your well wishes.
May God ever bless you ate, may your son live a life full of happiness despite of his condition ❤️
@chaparlepez Thank you for your heartfelt message and blessings. We are hopeful and believe that happiness is indeed possible despite the circumstances. Your support means a lot to us. ❤️
A warrior, indeed!
I'm pleased that you were able to have corrective surgery, and lets hope that every thing continues to go well 🙏
@millycf1976 God willing, our long-awaited prayers for his surgery to happen will be granted.
Laban lang Ma'am @angelicaura
Permi ni ma'am 💪
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What a warrior boy.. may God bless you🙏
@itsmekers thank you ma'am and god bless you po ❤️
Your welcome🤗
Sean, you are a courageous little man! I'm hoping and praying that your surgery goes well. All the best and keep being strong!
@cindee08 Thank you for your kind words and encouragement. Sean truly is a brave young boy, and we appreciate your support and prayers for his upcoming surgery
A brave mom with a solid King! Get well soon kiddo❤️
We are grateful for your well wishes and hope for a speedy recovery for our little king. Your kindness is truly appreciated. ❤️
Such a brave young man.
I hope he gets treatment overtime.
And I also hope the bullying stops. I think the responsibility is ours, as parents, to teach our children the good ways instead of allowing them to bully others.
I pray for more strength and courage for you.
That's what I always do, ma'am, every time someone bullies him. Instead of scolding the bully, I take the time to explain to them why bullying is wrong. And I'm happy because now they understand Sean's condition better. They themselves come to our house and play with him. 😊❤️
Hi, I remember hearing about your son's condition, it is a very complicated issue, I just pray that God will give you the strength to continue as you have done so far. Trust that everything will be fine from now on, you don't need so many words to explain the situation, you are a warrior too by sharing this situation with us. God watch over Sean
Thank you for your kind words and prayers. Your support and encouragement mean a lot to us. We truly appreciate your understanding of the complexity of our son's condition. We trust in God's strength and guidance as we navigate this journey. Your words of reassurance and belief in a positive outcome bring us comfort. Thank for your continued prayers for Sean. May God bless you.
It is admirable to see all that you do to try to keep your son as comfortable as possible, trying to meet his needs and not let his condition be an impediment to his daily life.
I'm glad that Sean is becoming more understanding of himself over time, it's not his fault what he's going through and it's good to stop paying attention to the bad intentions of others.
He really is a warrior, I hope a surgery is possible soon and that he has the best and most hoped for results.
I loved reading your post and story, thanks for sharing it with us. Greetings and hugs!