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Daddy Post – Value in Life

Written by Juan – Peanut’s DaddyIMG_1303

Lately their has been a lot of talk about Iceland due to a recent report by CBS. The CBS article addressed how Iceland is trying to eradicate Down Syndrome completely. Iceland’s stance is that all women should be made aware of the possibility of their child being born with Down Syndrome via screening. Since the screening was introduced in 2000 nearly 100 percent of women who receive a positive diagnosis have chosen to terminate their pregnancy.

IMG_1337Although we are talking about Down Syndrome, the underlying question we must address is the value of life.

I remember shortly after my wife and I adopted our daughter I was asked by a Dr. “If her mother knew that she had down syndrome, why not just terminate the pregnancy instead of putting her up for adoption?” I can honestly say that I had to walk away because I was afraid of how I would respond.  This question also made me stop and think. We brought Jana into our home at 1 month old, tiny (since the name Peanut), cute as can be and full of life. Jana’s first year of life was very eventful. She required medical treatment outside of our county (2 hours away) and initially we had appointments several times per week. Jana had appointments at the Down Syndrome Clinic along with several follow up appointments with ENT, Cardiology, Pulmonology, Pediatric Specialist, Blood Screenings, and a few hospitalizations due to respiratory and low Oxygen concerns. In order to attend all of her appointments (which I insisted) I had to file for FMLA coverage.  I very quickly used up my 160 hours of vacation time I had accumulated and we accumulated over $4,000 in debt due to travel, hotel stays, specialized testing (still waiting reimbursement). I don’t say this for attention, but for understanding. Although my wife and I focused on her well being, others were not able to see past the hardship. At times we would only sleep 2 to 4 hours per night due to her sleep apnea, taking shifts as needed and pulling all nighters on weekends. We were afraid to talk to friends and family at times because we were afraid that people would judge Jana, or feel like we did the wrong thing by taking her in. We spent as much time with our other biological children (Joey, Mason, Jaylen) keeping them informed of her status, pending tests and upcoming medical procedures in order to address their concerns for their sister and our family.IMG_0904

I’m not going to lie, it was hard. Being away from our other kids at times for days, nights, weeks, lack of sleep, minimal time with my wife, financial stress and being helpless to help our daughter at times. Through all of this, not once was the value of Jana’s life questioned. Their were no regrets about her adoption. From the moment that she was placed in my arms by the social worker we bonded and a life long connection was formed.  What I came to realize though was that others were not able to see past her diagnosis, past her appointments, past the zombie like appearance we sometimes reflected due to lack of sleep. They looked at us with pity and at times questioned our decision.

At that time Jen and I made a decision, to share our experience with others. Jana’s blog was created and we began to post as many pictures of her as possible. Initially we were unable to post anything due to her “foster” status but we walked the line as much as possible. We wanted to introduce our friends, family and the world to the Jana that we instantly fell in love with. We wanted to help others to see past her diagnosis, and fall in love with the same “Peanut” that we fell in love with instantly.  We wanted them to see her smile which brightened our day, hear her laugh which instantly made us smile, see her progress (even if minimal) and share in our pride for her hard work and accomplishments. We posted as many pictures and videos as possible in order to introduce the world to “Peanut”.

IMG_0728In fact, just this past week Peanut found fame, with some of her video’s being posted by several sights and views quickly climbing above 1 million, 2 million and now somewhere above 5 million. With those views came many comments of support and encouragement and of course discouragement and questions of the value of her life. If you know us personally you know how protective I was (AM) of my peanut. My initial desire was to respond out of emotion but as I read the comments I was saddened. Not because of what was being said but because of how much these people were missing out on. You see, they did not know my Peanut. They questioned her progress, “She’s taking a few steps using a walker, big deal” not knowing that these simple steps were a result of months of hard work and support from others who love our JANA as well (PT, in home therapy etc). I felt bad for those that were so shallow that they were unable to see past her diagnosis, were unable to see her beauty and share in her love. And then something happened. Some of our online friends began to reply “Hey, that’s Peanut”, “That’s Peanut and she’s made so much progress”, “That’s peanut and you need to read her story on her blog”. Others began to step up and defend my daughter, because they had also invested their time in her and had fallen in Love with who she is.

In her short life (2 years) peanut has changed our life for the better. She has brought our family closer. She has taught us about overcoming adversity, working hard to achieve small steps (literally). She exposed us to an amazing community of support online, provided us with the opportunity to meet some amazing families and loving children. We have shared our story with others, prayed for families we have never met and cried for families we may never meet. All this was possible for one reason. Jana’s biological mother saw past her diagnosis and found Value in her life. Although she was aware that she would be unable to address her medical needs she made the selfless decision to place her daughter up for adoption and not terminate her pregnancy.IMG_7539 (1)

Choosing life not only changed our life for the better it has also allowed Jana to impact the life of others worldwide through her smile and her laugh. In her short time here she has helped us gain a better understanding of the value of life. What Iceland is failing to recognize is that that they are not just eradicating Down Syndrome in their country. They are killing a beautiful life who may happen to be born with Down Syndrome. You cannot debate the potential of that life when you never give him/her the opportunity to live. In her short life Jana has taught us so much more about “abilities” despite being labeled with a “disability”.

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Buddy Walk 2016

img_6917This weekend was our second Buddy Walk.  This year we had almost 60 people walking in Team Jana!!  It was a beautiful morning and I think everyone had a lot of fun.

Honestly, before the walk started, I caught myself looking around at all our friends and family wearing their “TEAM JANA” shirts.  I was so proud to be her mom!  Seriously, how did we get so lucky to be this amazing girls parents?!  She has changed not only our families lives, but the lives of those around her.  Because of her, she has opened doors to new friendships and new experiences.  I’ve said it before, but honestly, if you spend more than 5 min with this girl you are in love!  She has a way of captivating others around her.  I haven’t met really anyone who did not stop to gush over how incredible she is.  And she’s mine!!!  How lucky are we that God thought we were the right choice for her?!  It just blows me away still.

This month we were able to raise $400 to send to the twins George and Grace (Read more here!).  Its not much but I am hoping it will do something to raise their spirits a little.  If you would like to still donate to this adorable family, please let me know and I will direct you on how to do that!!

Lastly, I just want to thank everyone who joined us this Saturday in support of Jana.  Your love means the world to us and we are so glad Jana has so many supporters who love her.  We are honored to have you in our lives!!

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TEAM JANA

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Big Sister, the Advocate

img_6778Today I had the honor of watching Jaylen give a presentation to her 5th grade class about Down Syndrome.  I was so proud of her, helping spread awareness and acceptance to one day make the world a better place for her baby sister.

When we first got Jana I was so worried Jaylen wouldn’t adjust.  For almost 10 years not only was she the baby of the family but the only girl!  I wasn’t sure she was prepared to make that adjustment.  But without a second thought, she adores her baby sister!  They are the best of friends and I am sure that will only continue  as Jaylen matures.

Since it is Down Syndrome awareness month, we thought it would be a good opportunity for Jaylen to share DS with her class mates.  Her teacher thought it was a great idea and welcomed us in.  Not only did Jaylen research DS herself, she also wrote out her speech with very little help.  She gave her presentation, showed a short video and then we both answered a ton of questions.  I wasn’t expecting that, but the kids were very interested in learning more.  They asked great questions and were very excited to see Jana.

I would like to think that Jaylen helped 32 kids become more accepting and open to befriending a child with Down Syndrome.  Her teacher now wants to talk to the principle and see if we can do it for the school too 🙂

Please watch the videos below 🙂

 

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Therapy Update

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Sitting in protest

This past week Jana has been making her therapist work!  She has not been cooperating and honestly, has been throwing a few tantrums here and there.  She has officially started army-crawling on her own pretty consistently.  Before rolling was her way to go…literally rolled EVERYWHERE!  But now she has realized that she can just push herself forward a little and get where she wants faster.  What does this mean for therapy?  We now instantly are forcing her to work on crawling on her hands and knees!  She is NOT happy about it.  Her therapist explained it to me like this, Jana’s mind has figured out first how to roll and now how to arm crawl.  In her head she knows how to get where she wants, shes good at it, and doesn’t need to change what she’s doing.  Prior to her army  crawling on her own, she didn’t mind us working on her hands and knees.  I find that so interesting!  As soon as her mind clicked and learned one task, she now fights moving forward to learn the next steps.

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Refusing to move!

So here we are.  I am now forcing her to work throughout the day.  I have been getting a LOT of bad looks and some screaming.  But she’s doing it.  Still in her shoes all day…but now we’ve added a pair of high top Converse…cause well they are cuter 🙂  I’ve posted a few videos from her therapy.  For those of you who still think she always so sweet and quiet…you should have a look!  lol

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Why Mother?!

 

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A little Inspiration

I came across this article and wanted to share it with you.  It is about a woman, Judith, a twin, born with Down Syndrome in 1943.  At the time her family had no idea the full effects of her diagnoses or that she was completely deaf.  She was sent to live in an institution at the age of 7.  From then on, she hardly had contact with her family, even her twin sister.  After many years apart, the sister eventually reunited and Joyce, her twin, was granted guardianship of Judith.  Soon Judith started creating amazing sculptures with yarn, twine and basically anything else she could get her hands on.  This woman, who never said a single word, was finally having a way of communicating.

Joyce recently wrote a book about the girls lives and the amazing art her sister created.  At the age of 61, Judith passes away but her art has lived on and is inspiring both the disabled and typical communities.

Read the full article here : http://www.huffingtonpost.com/entry/judith-scott-joyce-scott-art_us_57c9cdafe4b0e60d31df1b2c

You can also find Joyce Scott’s book here: Entwined: Sisters and Secrets in the Silent World of Artist Judith Scott

57c9e53b170000172ac7750b  “The first piece of Judy’s work I see is a twinlike form tied with tender care,” Joyce writes.  “I immediately understand that she knows us as twins, together, two bodies joined as one.  And I weep

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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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New Shoes

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So today I purchased these lovely shoes for peanut.  Even though she has literally 15-20 pairs of adorable, stylish shoes (that she hardly ever wears truthfully) sitting in her closet, I had to go purchase these plain white stiff high tops.  They obviously scream baby orthopedics and I’m sure many families purchase these for their little ones.  They are just not our style.  So why did I buy them?  Here’s why…

On Monday at physical therapy, Betty was going over her progress again with me.  We are focusing a lot of getting her to army crawl consistently but recently she has been getting up on all fours to try to crawl on her own!!  She is also been trying to pull herself up not only to her knees (like we had been working on) but also to full stand!!  Every time she does it she gets so proud of herself.  Its so awesome!!  Because of this, Betty suggested I purchase high top shoes with laces to help her little ankles out.

FullSizeRender-1Here’s the issue: typically when your child starts walking, the last thing that is suggested is putting shoes on their feet that will prevent foot movement.  Typically we them to feel natural and allow their toes to move and develop as they walk.  Which is why the moccasin shoes are such a hit (that and the fact that they are pretty cute)  Barefoot is always best!  Kids like Jana however, often have poor muscle tone in their feet, therefore, they will often curve their ankles and even walk on the sides of their feet instead.  Betty informed me that all of her children she’s worked with who have Down Syndrome have some type of issues with their feet.  Currently, Jana has a good arch (flat feet is pretty common), she does not have a wide gap between her toes (surgeries are often needed to help align the feet better) her feet naturally point up and straight the way typical kids do (pigeon toed)  So why worry about the support now?  To hopefully help prevent her from needing braces as she gets older.  This support now will help her feet stay in place the way they need to and allow her ankles to get stronger as she continues to develop.   FullSizeRender

The plan is to have her wear them throughout the day.  When I am working on her standing, when she is trying to crawl, when she is napping!  All this time will allow her body to one get used to the weight of these bulky shoes, and also, keep her feet in the correct position.  Truthfully so far she is not a fan of them.  I’ve had them on her now for 30 min and she hasn’t stopped pulling at them or trying to eat them lol!  It took me about 5 min to put them on her because she kept pulling away!  I’m hoping the more she has them on, the less of a struggle that will be.   IMG_5474

So for now, I need to put away her adorable squishy Vans, her soft leather moccasins and her tiny little ballet flats.  She will be rocking these and I’m sure will be looking as cute as ever!!