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Trisomy 13 won't drag me down!

Updated on July 17, 2015

Trisomy 13 cannot stop me from being happy!

Ever got that phone call from your doctor stating about your pregnancy, "I need to talk to you and your husband about your baby, please come to my office on such and such date and time."? -CLICK- Our little angel was diagnose with Trisomy 13 (Patau syndrome) and were told she might never see her first month of life or birthday base on statistics. We did nothing wrong and it was a fluke of nature and nobody will ever be able to prevent it stated by the doctors. Our hearts were broken and from that moment on we knew we were going to have her. She was our first baby too.

The day she was born we loved her regardless of her Trisomy 13. She was the most beautiful baby we ever saw. We did not know how long her life would be so we went on road trips all across the states, to show her the beautiful world if anything were to happen. To the ocean we drove three times from Kansas City. What amazes us was, we both had never seen the ocean before and because of our love for her we saw many new things together as the Tiny Vang Family.

Family day at Como Town.

Family day at Como Town.
Family day at Como Town.

Will you keep loving your baby regardless the outcome?

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Now, our Eisha is 6 years and growing on stronger and happier. Eisha is truly a great blessing God gave to us. There is not a moment we regret or wish to turn back the time with our experiences shared with princess Eisha. Because of Eisha she has made us better people. Because of her our lives have gotten a lot brighter. Because of her we were able to stop and smell the roses. If it weren't for her we would still being living in this fast pace world and forgot what is most important that God gave us. Our lives we give to Eisha... Well... Maybe Mommy and Daddy will... But I don't know about her little brother and sister... They are ever too busy being 2 and 3 year olds, laughs!

Our Princess Everything or Miss Honey Doodle has the funniest personality. Most time of the days she smiles and enjoys the beautiful world and its gifts. Some days she is just like everyone, crabby-crabby all day long but it’s just one of them days. And there are days when she wants nothing to do with her little brother and sister just because they are annoying her. She would kick them, push them, or just shakes her head no or cry nonstop until cry-baby sister and brother goes away. Some days, she do not want mommy or daddy because she just wants to be a big girl. She will cry or shakes her head no if we call her our “baby”. Our big girl princess is the cutest miracle in our lives that is like the sun shining brightly in the skies.

Amazing items to help your special needs child play and adapte.

The day Eisha was born; we lived everyday in fear of losing our first born child. But we kept telling ourselves, if this is the will of God then it will be ok because God is good and everything he does is for the good. And because of this we have seen that everything God does is really for the good. We just have to stop, smell the roses, and look for the silver lining. Nothing is ever done in vain even if it seems hopeless. It’s a blessing. Everything that happens to us even the things that we perceive to be negative only exists to make us stronger for the next hurdle in life. We live to learn and experience to grow into stronger and better people. OR, we experience to give a helping hand to other people out there who are finding it impossible to cope with.

Very touching T13 video clip with facts.

Just because the world is telling you negative things, place your trust in your God. With God all things are possible regardless how negative it seems. Trust me when I say, even if your child's life is short lived it was a wonderful gift and blessing from God. I know this because recently I had a baby diagnose with anencephaly. We decide to carry him to full term and had him naturally. He lived the greatest 2 days with us. Ivan was the sweetest thing God have bestowed upon us. God blessed us with one of his greatest and special creation just like Eisha.

Here's a doozey for everyone to ponder about, that our Chaplin told us when my husband and I had Eisha. I feel the same for our Ivan as well.

Have you ever wonder that in Heaven God asked this angel if she/he is willing to come to earth with this challenge? And the little angle decided that she/he will take God's challenge on. And this little angel came down to earth with their task but us people saw it differently and treated it badly. Maybe Ivan came down accomplished his mission and had to go back home to God.

Parade at Rice Street.

Parade at Rice Street.
Parade at Rice Street.

Your Not Alone.

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.

Becoming a young mother to two special needs child 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 the 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 was that the main stream community didn't understand the challenges of having a special needs child in a Minority Community. I wish for everyone to know that you're not alone and many are there facing the same thing. You just have to look closer.

Hmong New Year at school.

Hmong New Year at school.
Hmong New Year at school.

Christmas!

Christmas!
Christmas!

Family Night at State Fair.

Family Night at State Fair.
Family Night at State Fair.

Do you have a special needs children? Share your story. OR just share what you think about special needs children.

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    • profile image

      anonymous 

      5 years ago

      Pajnhiaj,

      Is there an email address where I can contact you? One of your articles (Trisomy 13 Won't Drag Me Down) links to my organization's website (Social Security Disability Help) as a resource. However, we recently moved to a new website. I'd love to be able to give you some more information about this, so that your readers will be able to continue to have access to our page on Patau Syndrome and Social Security Disability. If you see this, you can email me at mac@ssd-help.org. Thanks!

    • Elyn MacInnis profile image

      Elyn MacInnis 

      5 years ago from Shanghai, China

      I have volunteered at a school for special needs children in a coal mining city in China for 20 years. I have met the most amazing kids there, teachers, parents too. They have brought joy to my life, and meaning to my work. Very very special. You are wonderful parents, and your princess Eisha is lovely. Thank you for your inspiration.

    • gottaloveit2 profile image

      gottaloveit2 

      6 years ago

      I didn't have children but I sure do admire you and your husband. You have a lovely family.

    • sponias lm profile image

      sponias lm 

      6 years ago

      I admire your spirit. Your example will surely encourage those who dont know how to deal with the ironies of life. Blessed!

    • pajnhiaj profile imageAUTHOR

      pajnhiaj 

      6 years ago

      I think opening your heart to the bigger picture is always better for yourself and everyone around you then be stuck with the wonders, pains, sadness, and what ifs. Nothing in life happens for no reason even if it seems worthless or nothing. Nothing is never nothing. Thanks everyone :)

    • Showpup LM profile image

      Showpup LM 

      6 years ago

      You are so wise to see the joy God has granted you. My heart aches for your heartbreak and pain but you have the best way of looking at things that we should all learn from. God bless you! Your daughter is beautiful.

    • darciefrench lm profile image

      darciefrench lm 

      6 years ago

      What a beautiful story about a beautiful family accepting God's higher purpose and roles agreed upon. You light the way. Children who live only a short while in this realm are blessed to undo their karma with expedience, as are you and your husband who witness where they come from, and where they return. Many blessings are yours. Thank-you for sharing your lovely children with us. To know them is to know God.

    • Frischy profile image

      Frischy 

      6 years ago from Kentucky, USA

      Every life is valuable, and we do a great disservice to ourselves when we dismiss people (of any age) with differences and disabilities. We hurt ourselves when we hurt others. I am the mother of a wonderful daughter who faces life with many challenges, but who spreads love, joy and music wherever she goes. She has been a beautiful blessing in my life. Thank you for sharing Eisha with us! She is beautiful and I am sure she is a blessing to you as well.

    • pajnhiaj profile imageAUTHOR

      pajnhiaj 

      6 years ago

      HUGS! thanks everyone!

    • sousababy profile image

      sousababy 

      6 years ago

      Came back to google +1 this gem. How fragile and special every life is . . .

    • sousababy profile image

      sousababy 

      6 years ago

      Beautiful and touching . . adding this lens to 'Living Articles on Squidoo' on the recommendation of haikuwedding. Take good care, Rose

    • reflectionhaiku profile image

      reflectionhaiku 

      6 years ago

      Deeply moved - a remarkable story of love and faith about your angel child Eisha who reminds all of us to " stop and smell the roses". Thanks for sharing.

    • pajnhiaj profile imageAUTHOR

      pajnhiaj 

      7 years ago

      Thanks for the wonderful story! Yes indeed they are blessed loving child. I understand how your daughter and you feel with the lose. Recently I just had a little baby boy who was diagnosed with something different but he lived with us 2 beautiful days. They teachs us how important life is and how we take it for granted. We should live everyday and cherish everyday for our little angels, living in a life for them as well. Blessed wishes to you and your family :) HUGS!

    • Tonigr profile image

      Toni Grundstrom 

      7 years ago from Minneapolis, MN

      My first Grandchild, Mason, was diagnosed with Trisomy. My daughter had to deliver him at 23 weeks. He was a very sick little boy and carrying him through gestation would have been detrimental for my daughter. Although he was still born we bathed him, dressed him and held him. He taught us that there were strings attached to our hearts that we did not know existed. My little one pound grandchild is loved to this day. Perfect or not, babies are a miracle. Very powerful lens!

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