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Our Story of Down Syndrome {Continues}

I have the most fun looking back over all the pictures and seeing how much this little girl {and my other children} have changed.  I get to relive every moment and it makes my heart full!!

Today is my attempt to raise awareness leading us up to World Down Syndrome Day on March 21st.  And also to help Spread the Word to End the R Word movement which officially is March 6th!! I hope you will join me in both!!

 

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Breaks my heart at the thoughts that run the mind, when I see God’s perfection, &  someone else see’s “retarded”.  I know I have been guilty a time or few of using that term in no harm meant.  But today that word is just sign of ignorance.  It is truly hurtful to the families with someone who has special needs.  The term used to be a clinical term used and now is synonymous for “dumb” and “stupid”.  They are far from dumb and stupid.  They learn all the same things that you and I “typically developed” do, just a bit slower and down a bit different path!

STW-Partners-Un-Dated-Dark

Respectful and inclusive language is essential to the movement for the dignity and humanity of people with intellectual disabilities. 

However, much of society does not recognize the hurtful, dehumanizing and exclusive effects of the R-word.

mia-walkingWhen I last posted, I shared that Mia was far from the typical down syndrome charts… and we had switched over to private therapy.  Look how happy this girl was to walk back and forth between momma and bubba!!

Summer-2011-&-FloridaOnce she started walking we had a hard time catching her!! She was scooped up above on our trip to Florida, she was walking the boardwalk over the water.  Such a big girl!! Those moments are some of the happiest!!

water-babyShe is our water baby!! And still is… anytime there is water she’s all in!!

kae-and-mia-swimmingShe has no fear and that’s a bit scary sometimes but man it sure is fun too!!

learns-to-drink-from-strawShe learned to drink from a straw.  We have bought every sippy cup on the market and she wouldn’t drink of any of them.  It was completely behavioral.  She “could” but she would take a sip and spit it out slowly.  It became a game.  And everything with Mia from walking to EVERY thing, is always “on Mia’s terms”.  And I am okay with that, most of the time.  But I introduced the straw and she’s been drinking from a cup every since.  Although, she won’t take milk from the straw.  The bottle or as she signs milk and says “bop” is still around today even at 3.  I don’t let her have it but once a day now, but she won’t take her milk any other way.  One day she will I am sure, just not today.

minnie-mouse-birthdayWhat a fun to turn 2!!

minnie-mouse-2nd-birthdayWe had sooo much fun celebrating Her and her favorite things!! Minnie Mouse.

mia's-2nd-birthdayHer favorite sissy!!

mia-turn-2Her love of dancing and singing!! And balloons!! They are so much fun and what a great therapy tool!!

It helps her with balance, all the while she’s playing!!

mia-working-on-laptopShe was so funny to catch completely folded in half.  She absolutely loved mimicking everything she saw the big kids do.  So, while sissy was away at school I let her pretend on her notebook that she indeed was doing school work too.

putting-baby-to-sleepShe would also lay her dolls down before her own naptime and tell them “ni-ni” it was the sweetest thing.  She’d hide her eyes like I do with her, letting the baby know it’s time to sleep.  All of these little things we don’t think about in our busy lives, are huge milestones for her.  She’s using her imagination and learning from every little thing we do!! This is huge development for her!! We celebrate all of these things BIG!!

surgery-day-tubesThis was one of the scariest times for us… She’s just reading her book and totally unaware of what is to happen.  We have been so blessed with what is “perfect” health for a down syndrome child.  She only had troubles with reflux and we were sure it was a milk allergy but the doctor wanted to make sure it wasn’t Celiac, because that is so common in children with down syndrome.  So while we were getting “preventive” tubes, they would do a scope of her tummy.  I was a nervous wreck with her being put to sleep.  She did great!! No celiac, she outgrew the reflux the more she was standing and upright.  Her tubes are still in place and working great.  Children with down syndrome have tiny ear canals, very hard for pediatricians to see with regular scopes… and in many cases they put these tubes in just to prevent all of the ear infections and things that can cause hearing loss.  She had the ABR test done at this time and had perfect hearing!!

mia-at-PTEverything about this little girl is Beautiful.

happy-girl-miaHer smile and giggle is contagious!!

faith-baby-miaHer words are few {right now} but her voice is so sweet!!

camo-and-zibraShe LOVES life to it’s fullest!! She touches hearts and makes people smile every where we go!! She doesn’t know a stranger and will make you her friend with just a look!! I love that about her!!

mia-DSG-picnicSo please, look into those eyes and pledge that you won’t use that word!! That you won’t teach your children that it’s okay to use it in slang!!

This precious face isn’t “retarded”- she’s beauty, joy, and God’s precious gift!!  She’s my daughter!!  She may have down syndrome but she isn’t defined by that diagnosis!!

thank-you-card

Thank you Thank you!! For letting me share my heart and my sweet little girl with you!!

I love the emails I get from other parents with little and big Mia’s!!

It warms my heart and absolutely makes my day that I touch yours!! 

So Thank you!!

 

 

Comments

  1. Lynette says:

    Mia is such a sweet little girl. BTW, a GOOD girl too!!

    Love her smile!!

  2. Nanaaacce says:

    I work with special needs children and they are amazing! She is beautiful!

  3. Annette says:

    I came to read your story by way of your facebook page, Vintage Charm. Thanks for sharing your family’s story. Our small family is very close-knit and we unexpectedly found ourselves blessed with a little girl a lot like yours. None of us knew she was coming, not even her nurse-mother. My niece has devoted everything to take part in her minute-by-minute milestones. She will be 2 in May and we cannot wait to see what she will do next.

    Best of luck to you and your family!!!

    • Annette thank you for sharing a piece of your family with me as well. It’s why I share, to support and encourage others walking the same walk. I love hearing from all of you!! May your family be filled with many blessings!!

  4. Awww….your little love is so precious. An amazing little piece of heaven to enjoy. 🙂 k.

  5. What an awesome story and a beautiful family! Mia is a precious gift from above and I am sure glad you’ve shared her with us!

  6. Such a sweet story and such a precious little girl! Our middle son, Parker, was diagnosed with Autism, so we have struggled with others seeing him as being different. I think God places these children in the hands of the parents that will love them no matter what challenge they may have. Thank you for sharing your story!

  7. I love reading about Mia and seeing her sweet face!! I look forward to meeting her, as well as you and the rest of your precious family one day!! I hope you also get the opportunity to meet our sweet Olivia. Olivia would love Mia, she is especially drawn to small children for some reason, but hugs await everyone she meets!! God bless you and thanks for sharing in support of Down Syndrome!!

  8. What a beautiful post … I loved reading it! Mia is beautiful. Our fifth child was named after a little girl we knew at church who had Down Syndrome … she touched our hearts so much and made us smile!

  9. Thereasa Gargano says:

    What a beautiful adventure with your precious Mia. Thank you for sharing, God Bless

  10. Beautifully written! She is beautiful and so very lucky that your her Mama. No one can advocate for Mia any better then you & her loved ones. I have worked with special needs children and one of my special girls had downs, love her to pieces. When my little boy was diagnosed with Leukemia his roommate was diagnosed the same day and she had downs as well. They developed the best friendship and remain friends to this day. People can be so mean and hurtful and until they walk a mile in your shoes they remain ignorant and uneducated as to what your daily life is like. Mia is in the very BEST hands and we can only hope and pray that people better educate themselves and their children as to what that nasty word really does to a family and individual. May God Bless you and your family!!

  11. Your challenge has not been my challenge, but I have had some that have been very difficult for me. One of the things that I learned is…..as much as you want to protect all of your loved ones, people say and do crazy things. What I had to learn was a way to realize that how other people act is a reflection of them….no you!!! (Not that it makes it much easier!) Best wishes for your whole family…..and yes, may God hold you in the palm of his hand….

  12. Your family is beautiful. Each one of us is especially made by our Heavenly Father to glorify Him and Mia is doing just that. I know Mia’s birth family and they are so blessed by your love and care of Mia. I am thinking that you are so blessed to have this little girl light up your life. May our Lord continue to use you to pour forth His glory upon this earth through each one of you. Thanks for sharing.

    • Jamie thank you soo much for leaving this sweet comment!! We are blessed beyond measure daily with our little girl!! I hope you have a blessed day!! ~ Lori

  13. Granny Karen says:

    Thank you again Lori! We love you so much.
    When we left Mia at the hospital I told her she was going to be a Missionary for God! And she is. (Thanks too, my sister Jamie!)

  14. What a precious little angel! Thank you for sharing this. The r word is so negative and yucky.

  15. JaneEllen says:

    I was so touched by story of your little sweetie, she is too precious. Would love to snuggle her, give her lots of love and kisses. She is a little girl isn’t she? God gives you all the love she needs to have a loving life. Aren’t we all different in our own ways?
    I saw a young Mother with her little down syndrome boy, she sat off by herself and seemed so defensive. I made sure as we left I went over to her and talked to the little boy and her, so cute. I felt bad for the Mother that she seemed so guarded. I love babies, it doesn’t matter, they are still such a precious gift. I hope that Mother’s life gets easier for her. Happy days.

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