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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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Recovery

IMG_1336Peanut had her tonsils and adenoids removed on Thursday.  The doctor said it was successful.  During the procedure he did a scope as well…and because of that we will be monitoring Peanut a little more until a plan is in place.  Don’t want to go into details about it right now.  After we see him in September for her follow up I’ll bring you into the loop.  Right now we are focusing on getting Peanut back to 100%.

So far she has been doing pretty great.  We only stayed in the hospital overnight because she was eating and drinking enough.  We were actually incredibly surprised at how great she has been.  We expected the recovery to be horrible.  It seemed like things were progressing quickly.  Then last night hit!  First she was so uncomfortable that she didn’t lay down until 1:30 am.  Honestly Juan and I passed out so we are not even sure what time she finally fells asleep.  However, at 4:30 she woke us up screaming.  After more Motrin and some snuggles, we finally got her back down around 5:30.  She woke up again around 11 and has been miserable since.  She is refusing to eat or drink because swallowing hurts so much.  Its so hard seeing her in so much pain and not being able to help.  We are praying this drop passes.  We were prepared (kinda) that the 4th or 5th day after surgery is always the worse.

IMG_1380So right now Peanut has been our focus.

Then the craziest thing happened yesterday!  Peanut went viral!  Like legit…over 1 million views!  How did this happen?  I’m not really sure.  We have her videos going through a company called Newsflare.  Because there have been so much bullying online against the DS community, Newsflare monitors when the videos have been downloaded and notify us.  So two UK media sites posted her walking video on their site and it went crazy.  As soon as I saw it and saw so many comments my heart stopped.  In the past I’ve read horrible hateful things on some of Peanut’s buddies images and videos.  I was expecting the worse.  There were a handful that I read that filled me with anger.  How people are so mean is beyond me.  But was surprised me was how many people stuck up for Peanut and attacked those mean people right back.  Now, I can’t condone words that were said, but it touched my heart that strangers stuck up for our baby girl.  She received so much love and support from so many people.  I’ve always known Peanut is destined to change the world!  She has already changed it for those who love her.  I am honored to be her mama and watch the world fall in love with her to!  Who knows, maybe one day you’ll be watching her on TV or seeing her beautiful face in a magazine ad 🙂

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A Nervous Mama

IMG_1265So the day is almost here.  Surgery day!  Peanut will check into the hospital at 6 am on Thursday morning to have her tonsils and adenoids removed.  I know, this is a simple procedure and its not a big deal.  Let me tell you, to a mama of a 2 year old…this is a big deal!!!  We have to hand our baby girl over to strangers and pray that they will return her to us safely.

I just finished reading this article… Anesthesia & Down Syndrome  and now my anxiety is even higher!!  My husbands response was “Stop reading these articles, pray and trust that God will take care of her!”  I know that God loves Peanut even more than I do.  I understand that He has a plan for her far bigger

than I can ever image.  I just need to stop focusing on

myself right now…and remember my job is to rely on Him.

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Please keep us in your thoughts and prayers this Thursday.  We for sure have to stay one night however the Doctor did tell us there is a possibility of a 2-3 night stay.  I will try to keep you posted.

 

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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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Don’t Judge

summerspecial6Recently 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.  summerspeical4

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.

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Guest Mama – Looking Back

caleb7

I’d like to introduce you to Karen today.  Karen is a beautiful mama to a very handsome boy named Caleb.  I’ve been able to follow Caleb’s journey as he competes in the Special Olympics, travels to be part of DSA Programs, and overall as he just lives his life as a pre-teen boy 🙂  I love that I’ve been able to connect with Karen because she has been able to advise me when it comes to these rough toddler years Jana is going through.  Part of our DS community is learning from others and passing that knowledge down.  So I’m happy to give you the chance to meet Caleb 🙂

Looking back, and looking ahead….

caleb6Raising Caleb has been quite a journey so far. We were/are “older” parents to begin with, so…that. And he’s got a ton of energy, so….that! We didn’t exactly plan to have Caleb, 17 years after his sister, but I honestly believe he was sent to us for a reason. Those first days and weeks were filled with lots of emotion – joy, sadness, confusion, anger, concern, but most of all, love. We loved him from the first, but realized that raising him would be more difficult than raising a typical child. I say that not because we loved him any less. But because we know the world still has a long way to go to be an inclusive environment for our kids with disabilities –whatever they might be.

Those first days of his life would also be filled with doctor’s appointments, and therapy visits. We settled into our routine, and wondered if this would be our new normal forever (It isn’t). Later on, Caleb headed off to preschool, and mom-playgroups turned caleb4into playdates with friends. He happened to be one of two children with Down syndrome at our church preschool. Both of them were included in everything. We worked hard on developing communication skills to make that easier. Big-kid school came, and therapies were done in during the day, which made it a bit easier for mom.

Fast-forward to today. Some days, I have a hard time believing our little guy is already ten. 10 is a funny age. Halfway between toddlerhood and adulthood. Caleb’s on the cusp of puberty, and I have my fingers crossed that going through that with a boy will be a little easier than it was the first time J Jana asked me to share what our typical day looks like. It brought me back to a time when Caleb was little; being fascinated with the one lone mom who stayed in our BabyCenter Down Syndrome group. Her son was older, maybe even ten years old. What was their life like? Was it really #morealikethandifferent ?

caleb1For us, the answer is yes, and no. We still struggle with communication most days, and fine-motor skills. (Fingers crossed to work on shoe-tying and other independent skills over the summer). We work more on planning for his financial future than we did our daughter, making sure he had a Special Needs Trust, and now, an ABLE account. We have a binder with his medical life – specialists and insurance information – for easy access. We think about his future, and what that might look like – employment, government assistance, living situation, love life! We help him to understand the importance of good social skills as he gets older. We pray that he doesn’t have many encounters with bullies or overhear disparaging remarks.

caleb8However! Caleb leads a full and active life, filled with friends, sports, school, and community events (see my IG to see all he does!). We are thankful that even though he has a few health concerns (open VSD and hypothyroidism), overall, he’s a healthy kid who loves to do things and meet people. He loves to travel, and we’ve been some pretty cool places. He loves his family, most especially his niece Evelyn. He loves to help around the house, but could care less about showering (!). He likes movies and TV shows and books; trains and cars and nerf guns. We like to do things as a family, no matter how seemingly mundane. He loves his daddy – loves to do things with him.

If I had to pick just one word to caleb3describe Caleb, I think I would choose “Excited!” because he is! He’s shown us how to live life to the fullest, and what it means to enjoy every moment we can. He shows us what unconditional love looks like, and what true friendship is. 10 years into our journey…we’ve learned a lot. But there is still so much to learn from this little guy. So, my advice to you, looking back, is to learn all you can from your child with Down syndrome. Give them the tools they need to fly. Because the world IS changing. There are so many opportunities for our kids today. The world still has a long way to go to be totally inclusive, but I think we are heading in the right direction. Be ready for poss-ABILITIES!caleb2

Peace,

Karen

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Down Syndrome Center

First of all, I was planning on posting this on Wednesday, but we just moved and my laptop was placed in a random box.  Thought it was lost forever, we finally found it last night!  Anyways…

This past Tuesday Jana had another trip to the Down Syndrome Center.  This is the awesome center she has visited twice before.  We are there for about 4 hours, but we see 6 different specialist.  Its one of our favorite visits because we get so much accomplished!  We started with seeing the Occupational and Physical therapist.  First of all, they were very happy with Jana’s progress.  They feel she is making great improvements and they gave us some tips and exercises to help move the walking progress along.  Also, they submitted a referral for Jana to receive Occupational Therapy there in San Diego.  It means that we will have to take the 2 hour trip every two weeks or so for her to receive the service, but it is not offered in our area and  I know it will benefit her.

The dentist was happy with her teeth and found out she has 10 teeth now!  We haven’t been able to count good because she bits us each time we are close lol.  They want us to schedule an appointment at the dental clinic at the hospital.  Nothing to worry about, just starting her on a healthy check up plan.

We were able to see the Speech therapist.  She was happy with Jana’s progress but knew there was more that could be done.  Our local regional center doesn’t feel a speech evaluation should be done before the age of 3.  The specialist at Rady’s did not agree!  So a referral was put in for her to be fully evaluated as well as be put into a special play group/speech program.  Yup that means another 2 hour trip at least twice a month for this service.  I’m hoping somehow magically they can be on the same day, but even if they aren’t she is worth it!     IMG_0078

Next on to Nutrition!  For the past year I’ve been bringing up the point that she hasn’t gained much weight.  She has been pretty consistently around the 18.6-19.2 lbs range.  Obviously that doesn’t seem right.  Finally someone agreed with me!  The nutritionist was worried that maybe her body is not digesting her food properly therefore she is loosing nutrition.  This would explain the throwing up often as well as the horribly stinky diapers (seriously!)  So she want’s Jana to see a GI Specialist to see what they suggest.  From there possible testing will be done such as x-ray or even a biopsy of her lower intestines.  She also gave us some pointers on some Lactose free products to try to help raise her calcium intake.

Finally we ended our trip with the Pediatric Specialist.  This was a new young doctor who recently took over the Pediatric Down Syndrome Department.  She was amazing and Jana just loved her!  We received a referral for her to possibly start taking Jana to a pediatrician in San Diego.  That way they will have access to all her hospital visits and updates.  And truthfully, she would receive overall better care.  (Yup, means possibly more 2 hour trips!)  She agreed with the nutritionist and felt Jana would benefit from seeing a GI specialist.  She also wanted to run blood work to check her normal hemoglobin count as well as rule out possible Celiac disease.  This would be a gluten allergy and could explain the low body weight.  So after we finished with the clinic we IMG_0083went right over to have her blood work done.  I have to say, my girl is MUCH stronger than me.  I am such a chicken with needles, yes even after 3 births, a spinal tap and a tattoo, needles freak me out!  But my girl took it like a champ.  She watch everything the nurse was doing and even held her arm still.  While sitting in Daddy’s lap (I wasn’t about to force her to do that!) she didn’t even whimper!  The nurse was impressed 🙂

So the next day the Pediatrician called us to inform us that Jana is clear of Celiac disease!  They are having us run more blood work when we go up this coming Wednesday for her ENT apt.  This is to hopefully rule our more things. 

So I’d say this was a very successful trip to the Down Syndrome Clinic.  It was a long day but truthful we got so much taken care of it was all worth it.  It is easy to complain about the possible trips we will be adding to San Diego.  The cost of gas, the time to travel, the re-arranging our schedule.  It’s very easy to see that all as a negative.  But I know there are a lot of mamas who wish they had the option to take those trips.  They have missing parts in their hearts from the little ones who were taken too soon.  This past year our DS community has lost a handful of beautiful babies and I need to remember to be grateful for all the annoying appointments, the long car rides, the countless phone calls and arguments to get her services.  All of it is because Jana is here!  She is mine and she is worth all of it!  None of us are guaranteed another day and I need to remember plenty of mamas would take my place if they could.  This past week especially I have tried to truly cherish my time with Jana.  With all our babies actually!  Life is so precious and things we least expect can come our way.  So, do me a favor, if you reading this and you have children at home, stop and make sure you hug them a little longer than normal.  Kiss their sweet faces and make sure you savor their smell.  Cherish every moment you have.  We are all so blessed to have the chance to continue to do these simple acts.