“We call ourselves the Tiny Vang Family which isn’t so small anymore.”
Trisomy 13, St. Paul, MN, 8/26/2005
Eisha is our heart and our world
Today, Eisha is 8 years old. Although with many medical complications and disabilities, she’s our love and our strength. Eisha is wheelchair bound, dependent of others for all basic needs such as bath and diapers. She is partially deaf and blind. Have hearing tubes and hear aids on both ears. Wear glasses. She is trach, tracheotomy so she is non-verbal. G-tube feed directly into her stomach because everything she eats goes directly into her lung instead of stomach, aspiration. Wears feet and back braces because of spinal curve and feet curve. Have cataract in both her eyes. Seizure disorders that are well maintain now via medication. Extra fingers on her hands and feets. Have many learning disabilities but she is still learning and proving many doctors and therapist wrong that if we give her a chance she will learn more than anyone think she is capable of, she can do a few sign language and use electronic push buttons to talk now. This year, she is able to sit by herself for 30 seconds, what a big accomplishment for her compare to the statement that she will never ever sit or be able to. She’s learning to walk by herself with a walking device. And she have the biggest personality I can think of, our little diva trickster.
In the end I want to share the message that having any kind of special needs do not need to be frown upon as a taboo or shameful. It can be a blessing in disguise. This is a blessing from God. These are some of the most cherished children and people from God and he only gave these blessed individuals to people he knows that will give them a great loving home with the greatest warmth without being objected.
Becoming a young mother to two special needs child with both different medical conditions my road was hard, lonely, and sometimes hateful from individuals because of the path I choose. For a long time I felt alone especially in my Hmong community because everyone kept telling me it was my bad karma or punishment. It took me a long time to get to where I am. And it might have been easier if I didn’t walk it alone and had another parent who understood. Although I had all kinds of support from the main stream community it took me a long time to see that I wasn’t the only parent facing this in a Minority Community. But the hardest obstacles I had were that the main stream community didn’t understand the challenges of having a special needs child in a Minority Hmong Community. I wish for everyone to know that you’re not alone and many are there facing a similar situation even though it may not always be exactly the same journey. You just have to look closer.
-Blessings, PaNyia Vang firstname.lastname@example.org