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?
Recently Peanut had a cancer scare. We didn’t share this info with very many people, because we were praying it wasn’t a very big deal. After attending the Down Syndrome clinic this past May, one of the specialist wanted to run blood work. Remember I mentioned they tested her for Celiac Disease? Well that came back clear and normal, however at the time her thyroid hormone levels were very low. This could mean something simple as hypothyroidism, where medication is helpful. To something more extreme as thyroid cancer. Our doctor wanted to run testing again to make sure that Jana just wasn’t fighting an infection at the time.
We waited two weeks to re-take the test, and then another week to get the results back. To tell you our stress level was through the roof is an understatement. We were so terrified of the possibility of cancer. I broke down completely instantly when I pictured my beautiful girl going through treatment, loosing her hair, having to fight non stop. I’ve witness other families go through the same thing. My heart as always broke for them. Suddenly we were facing our biggest fear. Thank the Lord, all the test came back clear! They are going to be testing her again in 6 months to insure, but as of right now she is healthy!
So what is the point of sharing this? During this very stressful time, I gained some clarity. Already we have had people look at our lives and somehow pity us. They see the stress, the doctors appointments, the sleepless lights and think we somehow regret bringing Jana home. During this cancer scare I thought “Would you go back and change it?” My answer was no. I feel like God brought Jana to us. He had a plan and purpose for her being in our lives. And even if my time with her is cut short, even if the worst happens, having her is still worth it! We would never even consider going back and telling our social worker no. Jana has brought so much joy and happiness into our lives and honestly, we wouldn’t change anything about who she is or the experiences we’ve had.
Life can change in an instant. None of us are guaranteed another day. I know as Jana gets older even more scary events will come our way. This coming August we have to hand her over to a surgeon for her tonsillectomy/adnoid removal. My point is, don’t judge a family by the struggles they are facing. See past the pain and see the determination, the love and the faith that is getting them through it.
This morning I took Jana to our local library story time. There were about 1-13 other little ones ranging from 1-5 years old. It was her first time attending so it was a lot of new things to experience and see. Also, she was the only child with special needs there.
We arrived early and she got to “read” a few books and play with blocks while we waited. The other kids seemed to know each other already so they all played together. She sat near them and watched mostly. When the teacher started the class they opened up with two songs and unfortunately for Jana, everyone clapped afterward. (Remember, clapping throws her right into a meltdown!) I was able to take her to the back of the room and calm her down. We returned and listened to the teacher read Dr. Seuss. After the story the teacher had the kids play with a parachute. You remember this in school right, each kid holds part of the brightly colored parachute and the shake and lift it. Jana LOVED it! She giggled and got excited each time they raised it high over her head. Then it was craft time, they made party hats in honor of Dr. Seuss…Jana didn’t really care about this. But enjoyed sitting with her “cousin” (our good friends daughter) and watching the other kids. Her favorite part of the event though was playing with a box of bright colored scarfs. Something she’s done in therapy multiple times. This is a great sensory game and honestly, just loads of fun 🙂 All in all I think Jana had fun.
So why did I title this Uncomfortable? Well, as I was sitting there with all these families around, I noticed something, non of the other mamas asked me about Jana. I never even got a “She’s so cute!” (Which btw I get constantly) I never got asked how she was. It seemed like we never really even got acknowledged. Now don’t get me wrong, I wasn’t a total loner here. There were two families I knew and they were happy to see Jana there and the teacher asked me a ton of questions about her therapies. But I just couldn’t shake the odd feeling I kept having.
At lunch I discussed this with my hubby. I thought maybe I was looking into things too much or I was just uncomfortable. His answer was “Most likely Peanut made them uncomfortable. They didn’t know how to respond to her” He reminded me, usually when we go to events like this, it is with her Infant & Toddler therapy program. There are other kids with special needs around. The parents are accepting of all kids who are “different.” It’s usually a safe place. Other than church, she doesn’t really have play time with “typical kids.” Is this what we have to get used to? Will my daughter just have to accept that at times she might not even get acknowledged because something she was born with makes others uncomfortable? I think that’s kinda crappy! She shouldn’t have miss out on things because others don’t know how to handle it.
I mean really! Its 2017!! We live in an age of information! People all over the world are fighting for acceptance. But yet, someone who is “different” than the norm makes people uncomfortable?! Guess what people, if my daughter plays with your child, I promise, they will NOT catch Down Syndrome. They will however, catch a friendship with a beautiful, intelligent, loving little girl. They will learn that outer appearances are not what makes someone special, but what’s inside that does! They will learn that God has a special plan for kids like Jana and they are lucky to be able to cross paths with kiddos just like her. Parents please, I am asking you, don’t raise your children to be scared of kids who are different. Teach them that differences make our world brighter and better. You won’t regret opening their world…I promise.
Ok…I’ve mentioned it before, but truthfully, before Peanut, I was always very uncomfortable around special needs people. Well…sometimes even scared. Today Peanut had therapy at our local Center for Exceptional Children. She was walking down the hall and blocking everyone’s path. This young man was trying to pass by. He was about 18 or 19 and he was special needs. I couldn’t tell you what his disability was, but I can tell you he had a massive smile watching Peanut go. We moved her to the side and his mom went past first. He stopped and held out his hand for me to shake. I smiled and shook his hand, he then raised my hand and kissed the back of it. No words, nothing else. Just another smile and he walked away. Now let me ask you, why in the world was I ever uncomfortable around people like that?! Yes, special needs individuals are different. But they are different the most amazing ways!! So full of love, compassion and strength. Worth so much more respect than the world gives them.
This young man probably won’t remember me. He probably didn’t even think what he did was a big deal. But I promise I will hold on to that moment. He made an impact on my life quicker than most people I even have conversations with. If I didn’t just stop and look at him, and not his disability, I would have missed this opportunity.
Next time your out, if you do run into a special needs individual, just say hi! Don’t ignore them or shy away because you are unsure of what to do. Open your heart to the possibility of something amazing! I know you wont regret it!!
So yesterday was Spread the Word to End the Word day. A movement to remove the words retard/retarded from our society. This was suppose to be a day of awareness and support for all these wonderful people who never deserve to be put down. Just a day for the community to rally around these kids to help make the world safer and more accepting for them. Sounds great right!?
Unfortunately, there are some mean, cruel, horrible people in our world! A few families that I follow on Instagram posted beautiful photos of their children and asked others to help end the word. These kids range from 1 year to 10 years old. Beautiful little kids with amazing families that love and cherish them. On these public posts, people actually used yesterday to attack these innocent kids!! Leaving mean messages about how their kids were not beautiful, how we need to not worry about the r-word because that’s what they are and even some saying they should have been aborted!! Thank God I didn’t receive any of these horrible comments. (I would not have been a very good Christian if so!!) But honestly, how can people be so horrible?! This wasn’t just one or two people…tons of people purposelessly searched these families out to attack them. We live in a so-called society of acceptance. Everyone has to watch what they say. Make sure they are politically correct and don’t offend anyone. Yet, these innocent kids are put down by strangers!? Where is their acceptance?!
This seriously upset me so much!! How am I suppose to explain this one day to Jana? When people are mean for no reason, where society would rather her be hidden away then accept her for all her beauty!? It is just so ridiculous! It really makes me have very little faith in people. No child should ever feel that they are worthless and put down by adults. No matter what their situation is!! This has to stop!!
OK…my rant is done…. UGH!!