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Is this the World We want?

Some of you may or may not have seen the articles and reports about Iceland and Down Syndrome.  Currently about 3-4 children with DS are born in Iceland PER YEAR!!  Yes, that’s right…each year only 3-4 amazingly special kids are given the chance at life.  Often times the only reason of these births occur is because the early screening was wrong.  Because of this, Down Syndrome is almost fully extinct in some countries.

Check out the article here: “What kind of society do you want to live in?”: Inside the country where Down syndrome is disappearing

Why is this important to us?  Because this epidemic is spreading.  These early screening are also being used in Australia, Europe and the US.  The need for “perfect children” is taking over the desire for life.  Doctors are pushing termination on new mother’s when they are uninformed and emotional.  I’ve spoken to a few new mama’s who said almost every Doctor appointment they have they are asked multiple times if they are sure they don’t want to abort.  This is horrible!!  The value of any life is not cherished anymore.

I understand, I know DS is NOT for everyone.  This is a lifelong, stressful, scary, and amazingly beautiful commitment.  But to say that Jana’s life is less valuable than our other children is ridiculous.  God has a plan and a purpose for her that is bigger than any of us can imagine.  She and all her other DS buddies make our world a better place.  Their determination, their tenacity and joy is contagious to those around them.  To eliminate them from our society would be detrimental to us all.

The problem is not these mama’s who are confused and scared.  All parents are terrified when they find out their child has something wrong with them.  The problem starts at Doctors who push termination.  Instantly they view DS as a defect that should be removed.  Instead of educating these families of the new progress the DS community has had.  Adults with DS are productive, happy members of society now.  Things have changed in the last 30 years and that should be encouraged not down played.

I saw on twitter a quote I want to share from actress Patricia Heaton (@patriciaheaton).

“Iceland isn’t actually eliminating Down Syndrome.  They’re just killing everybody that has it.  Big difference.”

We need to remember that ALL LIFE MATTERS!!  This shouldn’t just be a discussion of DS termination.  This is life termination.  Our lives are ambushed daily but the petition to be accepting, tolerant and loving to those around us.  But yet, when a innocent child is born with slight differences, we instantly want to throw them away.  Where is the respect for these tiny lives?  Where is the love for life?  downrightperfect

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Every good and perfect gift…

card1FrontWhen Peanut came into our lives we were fully aware of her diagnosis.  We had the option to say no.  We had the option to say Down Syndrome was not for us…and no one would judge or really even know.  Truthfully, a few other families before us said no.  Thank goodness they did…because if not we wouldn’t have had the option to say yes.

I’ve recently spoken to a couple of mamas who were struggling with their prenatal diagnoses.  They know when their sweet baby is born, they will face a multitude of issues.  They have doctors and health care providers constantly asking if they would like to terminate the pregnancy or set up an adoption.  As if this child is less worthy of love and life because of the Down Syndrome.  Instead of these mama’s receiving support from their doctors, they are pressured into decisions they are not prepared to make.

You see, when a new family receives a diagnoses of any kind, especially Down Syndrome, they need to first grieve the loss of the child they had prepared for.  This is extremely common.  Some new families struggle bonding with their children right away, some cant seem to see past the diagnoses, and some cry for days on end.  All of these reactions are completely normal.  No one wants their child to be “different” in the world.  We never want them to have to see specialist after specialist, prepare for surgery at young ages, work harder than anyone to just achieve simple milestones.  The idea of having a special needs child is terrifying, but let me tell you, the joy overcomes the fear!

I want to speak to the new mama’s out there.  I know right now you are scared.  You are feeling alone, secluded from your friends and family, you feel lost and worried that you will fail your child.  You are confused about the services your child needs, scared your mess something up and will affect them forever.  You are terrified of the future, not just theirs…but what will yours be now?  You are scared that no one will love and accept your baby as much as you do!  I know you are feeling a world win of these and more, because I have felt the same.  But I want to tell you, you are not alone!  You have a community of mamas at your finger tips.  They will cheer with you at each new milestone, they will worry when doctors apts come up, they will cry surgery is needed.  They will pray and love your child almost as deeply as you do.  They will send you encouragement and love, because no one else in the world understands what your facing as much as they do.  You are not alone!  Your child will grow and become a star in the world.  A special piece of humanity that God just had bigger plans for.  You will experience more love and excitement than you ever have faced.  You will learn to see joy in the smallest achievements and feel love when words cannot be spoken.    Your child will make you stronger than you ever realized you were and help you love even deeper.

I want to leave you with this poem.  Its kinda been passed around the DS Community a bit.  But it is there perfect example of what it is like to be in this special club.  Hold your head up high mama!  God pick you out of everyone to raise this special angel.  Be proud of this honor!  Not many people get to join our club 🙂

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With an Aching Heart

FullSizeRender-2Yesterday heaven received a warrior.

I’d like to introduce you to Walt.  He was born with Down Syndrome and a congenital heart defect.  He underwent countless surgeries and procedures to keep his heart and organs working. He spent way too much time in the hospital and not enough time being able to just be the precious little boy that he was.  He endured so much pain and struggles but with his loving family by his side, he kept fighting.

Yesterday, just 3 months short of his first birthday, Walt went to his eternal home. This past weekend he was sent home to pass in peace. Yesterday morning he FullSizeRender-3let go in safe in his mamas arms and ended his pain.  Now instead of pain and struggles, he is joyously in the arms of our Lord. No more pain, no more tears, no more surgeries, little Walt is finally at peace.

Since I read the news yesterday on Walt’s Instagram page, my heart has truly ached  for his family.  Today they awoke with a part of their heart missing.  Though they are at peace because they know his pain is over, it doesn’t mend the hole that I’m sure they are feeling.

I’m not just sharing this with you to break your heart. Many kids face these same struggles Walt faced each day. Jana was born with a congenital heart defect. By Gods grace she has not needed any surgeries, but that doesn’t mean she is forever in the clear. So many tiny lives are taken away sooner than their parents were wanting, but that doesn’t mean their lives weren’t worth it!  Some people feel that this is reason enough to abort Down Syndrome babies. BecauseFullSizeRender-1their lives might not be as “fulfilling” as typical children. I can pretty much guarantee that Walt’s family wouldn’t trade a second of his life to insure they had a “healthy typical child”. I’m sure they will cherish ever smile, every snuggle, every tear that they shared with their little warrior. Even though his life was short, it was worth it!!

For the past year Walt’s family have set up a fund to help other kids facing the same struggles as Walt. They’ve helped other families who are watching their little ones struggle.  They made sure Walt’s life had a purpose and that they were able to share Gods love with others. I encourage you to visit their site. Take a look at more photos of little Walt and see how much God has blessed this family.

Warriors For Walt

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Sleep in peace sweet little Walt

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Homie with an Extra Chromie

Day 18 of the 21 day challenge…IMG_8253

Just the other day I got a package in the mail that I was very excited about!  I ordered Jana a shirt to wear for her very first Buddy Walk that will take place this coming Saturday.  The shirt came from a company that started because of a boy named Reeve.  His family wanted to help bring awareness of Down’s in a cute humorous way.  They discuss that often when people meet a child with Down’s, they feel awkward and unsure of how to act.  These shirts help promote that it is totally OK for these kids to look slightly different.  That difference is beautiful and that people should get comfortable with it 🙂

Since having Jana, my world has been opened up to so many wonderful families.  Unfortunately I haven’t been able to connect with many locally, but because of the amazing way the internet connects us all, I’ve been able to connect with other families just like us.  So many people are on the front line of the battle to bring acceptance to these kids who have Down’s.  Many have already paved the way to allow our Jana the opportunities she now has.  I know it is a very exclusive club, that many never get a chance to enter.  But I’m proud to be a small part of this community of families with Down’s.  I hope that one day Jana can be part of the fight to help spread awareness and acceptance.  That she can make her mark as well in our community.

Learn more about Reeve and his awesome Tees HERE: Reeves Tees