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World Down Syndrome Day 2014

Today is World Down Syndrome Day 2014 I want to continue sharing our story of what down syndrome is to us.  Joy uncontained, a precious life worth living.

Today the third month and the twenty first day…. March 21st …. 3:21

wdsd 2014 vintagecharmrestored

What’s the significance?  It’s a cool thing that explains Down Syndrome. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21.

This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm – although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all.

There are different types of down syndrome and there are many tests you can take to determine if your baby will be born with down syndrome.  That last nugget of information is the reason I blog about and share our sweet Mia!!

Those prenatal tests are the reason for this shocking and horrifying statistic- 9 out of 10 mothers abort their baby because of the diagnosis made.  Our birth mother was counseled to do the same by genetic doctors. Praise God for the amazing angels that surrounded her during a time that could have been so much different.

seeing-the-beauty

Our story if you haven’t been here before, is much different than the typical parent of a down syndrome child.  You can read all about it here… But short story, we adopted and we CHOSE her with all our hearts and knew she would be born with down syndrome.  This doesn’t make us heroes or special.  It just means- that we did know.  I didn’t experience the grief, shock, disappointment, or many other feelings that many mothers who find out go through.  I don’t look down upon those that went through that.  And I certainly don’t put us above them.  I thank God every day that He stood along side our birth mother and helped her through a time in her life, that I cannot even imagine.  I thank God for her strength and the Gift that she gave to us!! Because whatever you may “think” down syndrome is- I am here to tell you it isn’t what you could ever imagine!!

IT’s soooo sooo much more!!

mom-and-mia

I remember when we sat down together and prayed about choosing a special needs that we could parent, live the life we were accustomed to.  It seemed so trite.  If I were pregnant I couldn’t choose…  But we went from international adoption special needs to domestic {which by the way ARE completely different}.  We learned about so many special needs and so many children that go un-adopted because of them. We had 3 active children and wanted to offer a child a home they wouldn’t otherwise have without us.  Down Syndrome was one of those that the information seemed so dated- by that I mean completely out of date.  I didn’t know anyone at the time with a DS child.  It wasn’t until we found out we were adopting down syndrome that all the information came flowing… it was nothing like what we read in the many books to prove we were ready for that decision and to take care of her the best we could.

So this is my hope, that future mothers will stumble upon this blog.  I know my platform is furniture & DIY, but it becomes larger through this blog.   To reach others that may never even think about a child with special needs or adoption… But my whole heart is for adoption and for special needs. I read so many stories of mother’s who share their absolute raw emotions of down syndrome, and that is great… but I want give a whole different perspective.  The one you discover when you are holding this angel that gives you the same joy that your “typical” child does.  The one that has a special love about them that no one can deny, the sheer JOY that simply can’t be contained.  Their laughter will consume you and turn any cloudy day to absolute rays of beaming sunshine.  I think so many woman have this vision of a perfect child and it’s shattered not by down syndrome itself.. but by the unknown… What will life hold for the child now?  What will life be like for us as a family?  A different kind of normal that isn’t atypical but just perfect!! One that shows the world that children like my Mia are so much more than the stigma or label that is associated with them.  I am so happy that so many little ones like my Mia have parents stepping out and trying to make that change!! Like Noah’s Dad, and many many others.

There isn’t a single thing I’d change about that extra little chromosome she has been Blessed with!! God will and is using it for big things!! The wonderful truth there- she doesn’t have to be perfect for Him to work His plan!!

Jeremiah 29:11 “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

playing-in-splash-pad

When we adopted Mia we were well equipped with answers to all of these questions we had, so we thought.  We expected a low muscle tone baby, slept a lot, wasn’t alert, wasn’t able to feed well, basically don’t expect much.  That was the information in books out there.  That is enough to make any mother sad… but what I heard from other people and mothers was so much more exciting.  Life expectancy was well into the the 50’s and 60’s, which is different from the late 20’s books still tell you.  The therapies and medical advances that have been made mean that children, teens, and adults with Down Syndrome are living longer and healthier lives that are full and abundant.

One nurse told me of a family that had 3 children including their daughter with DS and every year she did the polar swim across Lake Washington and she made it all the way across… none of the others would even try it.  I watched a sibling to one of my oldest son’s teammate be a cheerleader for the local football recreational team.  She was in all general ED classes because she belonged in them.  She was incredibly smart and able.  Stories like these that lift you up and inspire you!! There is nothing “down” about it!!

going-to-school

They are smart!! Don’t ever ever doubt that… not even before their first words begin to stammer out.  They will be able to one day look back on those raw emotions that turned into a wonderful story and think “I caused you pain….” NO!!! They brought you JOY!! It’s no different than growing up thinking you were a mistake because you weren’t planned…

God makes NO MISTAKES!! I cannot tell you the lives that my precious girl touches with just the smile on her face.  And I can tell you those grumpy old ladies in line at Hobby Lobby in front or behind us that don’t smile with her relentless “Hi,”  smiles & waves, and more “Hi”… they simply can’t be touched and I feel sad only for a short second- not for Me, or Mia but them… They are missing out on one of God’s biggest blessings.

dancing-to-school

Happy… She is happy. She’s down right cranky at times too.  She’s just like any other 4 year old… but she’s not.  She works harder to tell us what she wants, than any child should have to.  She has the biggest purest heart that will love you unconditionally, with more love than you can possibly hold.  She is playful and determined.  She’s a firecracker full of life and adventure. She’s going to do big things not because I say it’s so- but because She CAN and She WILL!!

readytotakeontheworld

A simple test can’t tell you these things that you ‘might not have even thought of before you were delivered such news… And moments of doubt and wonder are so necessary as all things are… But I want you to see what Down Syndrome Isn’t.

happy-world-down-syndrome-d

It’s not pitiful or the dreaded R-Word!!

It’s not a defect it’s His perfection!!

It’s not a death sentence it’s a Joy you never knew you were missing!!

It’s not the end of your life- you will do all the things that you would do before and want to do in the future. It’s one of the most beautiful journeys you’ve ever been blessed to take.

Some of the medical problems that are so common with down syndrome babies happen in typical babies as well.

Children with down syndrome are able to live happy and healthy lives.  They need a little extra help doing all the things we take for granted: but they go to school, they play, they have friends, they ride bikes, drive cars, they have jobs, they live alone {not my Mia- I am holding on as long as I can!!} they dance, perform in plays, and they LIVE LIFE to the fullest. They do all the things you hope and dream your child could do!!  Because YOU are the advocate, YOU are the support, and YOU are the one that will encourage and help them succeed!!

Life doesn’t have to be perfect to be lived and loved!! God’s biggest blessings are through imperfections in the human eyes… but trust me my little girl is Perfect in every way!!

waiting-for-dolphins

I thank God everyday for the incredible strength and courage that our birth mother had in carrying her to term and giving her the gift of life.  I thank God for the many that supported her along her journey.  I love sharing our story with you and others so that you can see the blessing that down syndrome has been for us.

Our family verse is and always has been- Ephesians 3:20 “God can do anything, you know—far more than you could ever imagine or guess or request in your wildest dreams! He does it not by pushing us around but by working within us, his Spirit deeply and gently within us.” {the Message}

To that we have added 3:21 “To God be the Glory” {NIV}

She is the little extra piece of that passage we left off- she’s bringing Glory to GOD with every breath she takes, every step she makes, every smile she gives… Amen!!

my-extra-cuteness

Our family would never be the same without her.  She absolutely completes us.  She in just the few short years has taught each of us something more than we could ever imagine.  We look forward to the years ahead and all that she will do!!  We waited so long for God’s blessing in our adoption journey… and I love seeing the promise delivered in small ways – this one our sweet E loves to share… One of the common characteristics of children born with down syndrome is this crease that runs across the entire palm.  God’s amazing plan in action… Did you know that yes she does have that, but so do I and Ethan…. It means so much to my E that he has that little extra something in common with her.  He doesn’t see her disability… She’s only full of possibilities in all of our eyes!! And that as he likes to say- ” That, Is only something God could do Mom”

So we took this picture this morning to show you… and miss mia “don’t want to” was her mantra!!

palm-crease

She has made each one of us stop and celebrate every little moment.  Currently the things we celebrate at 4 that I know we took for granted with each of the other 3.

climbing-through-tunnels

Jumping off a small curb with both feet.  Coloring on walls has become a way to celebrate the development of her incredible down lines and circles… Saying 2 words put together.  She added -ing to run and said running while looking at a book and seeing Sven running away from the wolves.  HUGE in our speech delay world.  While I know your toddler is talking circles around her today… I am still able to find that unsurmountable JOY hidden in that -ing moment!! Hooray for Mia!! We narrate every little thing we do {in song most times- walking musical here} to help her hear the sounds and learn the words…

I hold onto this verse and God’s promise for her… Isaiah 59:21 “My Spirit, who is in you, will not depart from you, my words that I have put in your mouth will always be on your lips, the lips of your children and the lips of their descendants- from this time on and forever,” says the Lord.

godiswithinhershewillnotfai

Grateful for the therapists that God has placed in our lives.  This lady loves this little girl almost as much as we do.  She is the fighting force in many of my friends lives with children like Mia.  She’s making a big difference in the lives of others and I am so thankful!! We love our Kathy!!

mia-in-speech

I’d go on forever and ever about our blessing- Mia Noelle… in translation My Blessing!!

Thank you for stopping in!! Please Have a beautiful and blessed day.

If you are a mom and have any questions… want support, need prayer, have any doubts- I am Here!! My whole heart is here for you!!

Happy World Down Syndrome Day 2014

Comments

  1. I am overwhelmed and so touched by your story. Thank you for sharing it. I’m not a mom (yet… gulp), and I’m not sure that’s what God might be calling me to, but I just wanted to thank you for being an advocate and sharing your joyous story about your beautiful Mia. In such a dark, dreary world that runs too fast on selfishness, it’s totally uplifting to hear about God’s Love and how others trust in Him. Thank you for not hiding or being quiet about it. You, Mia and your entire family are salt and light in a sometimes dreary world.

  2. Lori…You have blessed me with this outpouring of love in your family story with little Mia! I’m well acquainted with with Downs Syndrome. A very close couple to my husband and I have a son who has DS….he will be 38 in April! We have known him since the day he was born…he is smart, loving and caring. He brightens everyone’s day he is quite popular in our small town! You are correct to say there is nothing down about DS! Bless the birth mother for carrying this little gift to term and God Bless you and your family! I will be sharing this!!
    XOXO, June

  3. Your story is so touching and full of hope. Mia is gem! Her infectious smile melts my heart! Thank you so much for sharing your love and your family! I pray you reach that one mother struggling! Love you friend!
    Angela recently posted…“Knock My Socks Off Red”- Makeovers That Made Me DroolMy Profile

  4. Granny Karen! says:

    Oh Oh Oh! I just saw this Lori! Really well done my dear! Thanks for sharing. Love you.

  5. I was on-line searching about furniture restoration and came upon this blog. It is rare that I read an entire lengthy blog, especially when I’m busy doing something else (like figuring out a house decluttering!) But I was extremely touched by your loving words. I am a speech-language pathologist and have had the privilege and pleasure of working with amazing parents like yourself during their babies’ and toddlers’ first three years. The passion, love, and conviction of parents are the force and fuel behind the growth we see in young children who have to work a bit harder to find their place in the world. May your family continue to know the joy and gratitude you express so beautifully.
    Judy Stone-Goldman recently posted…A Tree is Preserved, and Grief AvertedMy Profile

  6. Gerry Rust says:

    Hi Lori,
    I just came accross this post because I was admiring your lovely metallic painted nightstands.
    I wanted to say how moved I was by it and your previous post on this subject.
    I’m at home at the moment suffering from a flare up of IBS largely brought on by a problem I’ve been having with a difficult client and this really helped to put things in perspective.
    It’s amazing how things that you perceive as a negative BECOME a negative but a change of thinking and attitude will reveal the positive.
    Your daughter (and all the children featured) is beautiful and full of promise. They will not lead perfect lives but who does? What does that even mean? They will experience joy and pain, success and failure, fulfillment and loss like any other child. Some things may not come as easily to them, others may be easier for them than for another child whether they have Downs Syndrome or not. It is the differences in people that makes our lives rich. With the support and love of their family and friends they will lead valuable and happy lives JUST like any other child. It seems to me that if there is anything ‘special’ about these children it is the great love that they inspire in, and give to, all that know them. Which is a blessing beyond measure.

  7. This is a beautiful and touching post. Thank you!

  8. God bless you and your beautiful child.
    At Rivercrest Cottage recently posted…Smoothies To Improve Your HealthMy Profile

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  1. […] March the Third Month and the 21st day, it is World Down Syndrome Day.  For the 3rd copy on the 21st chromosome,that creates all the […]

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