0

Uncomfortable…Part 2

Ok…so first I have to apologize.  When I wrote the blog earlier today I was angry and upset.  It hurt me to see people treating my beautiful girl differently.  After having a long discussion with the big kids and my hubby…I understand the situation more.  I don’t think the library was just full of mean moms today.  I do think Jana made them slightly uncomfortable, but not in the way I took it.  If I look back to before we got Jana, I’m sure there were numerous times I made a mama of a special needs child feel the same as I did today.  Most people are unsure on how to even start up a conversation with a SN mama.  Do they bring up the disability?  Do they try to ignore it?  Ask questions?  Don’t ask questions?  There is always a fear of offending someone.  That’s whats pretty amazing about kids…they will come right out and ask, and then fully accept the answer.  Why do we loose that child like innocence?  I’d love for a mama to ask me questions about DS!  I’d be happy to share all I know and explain what a blessing Peanut has been to us.

Today wasn’t a learning experience for Peanut…it was for me!  I have to gain a tougher skin.  I need to be prepared for Jana to sometimes be the outcast.  I have to be there to smile and brighten her world, when things seem to tear her down.  I need to remember that no everyone is comfortable with difference.

To end your night, I wanted to share this video that was shared on IG.  Its kinda funny…but so true!!

1

Uncomfortable

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. IMG_9089

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 IMG_9095therapy multiple times.  This is a great sensory game and honestly, just loads of fun 🙂  All in all I think Jana had fun. IMG_9107

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 IMG_9103information!  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.

 

 

 

1

Daddy Post – Don’t Be Discouraged

IMG_8916I remember not to long ago our family was picking up some food at a local Jack In The Box. Our kids noticed a homeless man sitting a block away looking around. Our kids asked if we could buy him some food and give him a cupcake we had picked up at church. We purchased the food and I walked over and handed it to him along with the cupcake. He said thank you and looked in the bag and appeared disappointed but simply smiled. As I drove away I looked in the rear-view mirror and remember watching the man stare at the cupcake and toss it in the bushes, look into the bag of food and simply tossed it aside. I was upset, not simply about the money that was just thrown away but of the mans actions.

One of the reasons why we started our blog was to share our story and hopefully encourage others to look at adoption as an option. Due to special circumstances with our adoption we were not allowed to share personal information or images of Jana until the adoption was officially finalized. We were always hesitant of sharing information, posting pictures etc. I was very cautious as the over-protective daddy that someone would try to take my baby away or the court would change their mind. I was so over protective that people would ask to hold Jana and I would smile, say No and walk away, and this was at church! As time has passed I would like to argue that I have learned to relax about this but I am sure Jen would tell you a different story (shh…. Don’t listen to her). I have always been very cautious about what we post, what images we share, what information we provide about her personal story and our adoption because of my personal paranoia and fear that someone would try to take advantage of that information.

Despite my personal fears we have always prayed that through our story that mothers who are considering an abortion would see that there are alternative options and families that are willing to take in their babies as part of their family and love them unconditionally. We have prayed that families that are unable to have their own children will see that there are plenty of beautiful children simply waiting for someone that is willing to open their home. We have prayed that families would be willing to open their homes to a baby or child born with a disability and experience the love and joy that Jana has brought into our lives.

IMG_8933I share this because this past week we were contacted by one of our followers on Instagram apologizing for not being able make a financial donation to Jana but stating that she would like to donate a few hair-bows. We were very touched by the gesture but also confused because we had not made any requests for donations or money. Although we have faced some health concerns over the last year we have been very blessed to be surrounded by family, friends, amazing church family and Pastor who have been supportive to our family. Nonetheless we were very touched by this offer. As Jen communicated further we realized that although we had not made any request for assistance for Jana, someone else had. Someone else was using our Jana’s images to request financial assistance. We were later notified by others that they had also seen Jana’s pictures and had assumed that she was having more serious health conditions that required financial support. Jen and I were devastated and I was angry. Someone was taking advantage of my baby’s situation for his or her personal gain. Remember that overprotective father who would not allow people to hold her in church, well, he was mad. Jen and I quickly notified our followers in an attempt to clarify any confusion, provide reassurance that Jana was doing well and request additional information about the account or accounts using Jana’s information so that we could have them shut down. To this date we are still waiting further information and clarification so that we can take the proper actions.

As Jen and I discussed this further we came to a realization. Although we have been blessed and have a support system in place to help us, others do not. There are families out there who need the added support, support from extended friends, and use sites like gofundme.com to obtain the necessary support to help pay for treatment and other things. Unfortunately, there are also people out their who are simply looking for another way to make a quick dollar, take advantage of others situations regardless of what emotional pain it may cause.

I started this blog by telling you about our experience providing food to a homeless man for a reason. I am not asking for praise or sympathy. What I learned from that experience is that I am not responsible for the actions of others. I am responsible for my actions. I believe that I have been called to help those in need to the best of my ability and I want to continue to do that as long as I am able. What I am not responsible for is their reaction. If I am able to provide a meal, a few dollars, clothes then I will continue to do so. What that individual chooses to do from there is their choice to make.Image.png

I will continue to share our story with others because I know that just as Jana has touched our lives and affected so many around her she continues to do that through her images and smile (although we are adding a watermark now 🙂).

For those of you who are in a place to help others please do not let a situation like this discourage you. Although there are jerks out their that are willing to take advantage of others. There are also people like Ricky Mena @rickymena www.gofundme.com/spidey4kids or Hannah from @hannahshappybundles http://www.gofundme.com/hannahs-happy-bundles who give of themselves every single day. They use the gifts and talents that God has given them to bring joy to families and children battling for their life and they need our support. Don’t allow something like this to discourage you from sharing and blessing those that are truly in need and need our support. I have been touched and encouraged by many of those families and the stories of those that give of themselves to reach others. I truly believe that they fully understand what scripture means when it tells us that “it is more blessed to give then it is to receive” (Acts 20:35).

Again, to our extended family I say thank you. To those out their giving of themselves daily to bless others I say God Bless you and our prayers are with you.

2

A moment to never forget

2-24-1Ok…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. 63def18c4d59a139e6804055810bff8e

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!!

0

Night to Shine

This morning I received a link to this amazing organization.  I needed to share it with you all today!  (Thank you Illi!  I love how you send me random bits of awesomness!!)

I think for the most part, the majority of you can look back and remember your prom night almost perfectly.  For the girls, the day consisted of getting our hair done, getting our make up just right and finally getting dressed in the dress that took weeks to find!  For that one night, everyone is a princess!  Unfortunately, for a lot of teens with special needs, this night never happens.  Yes, there are amazing stories of teens who go to schools where their peers have accepted and loved them.  They are able to join in on all the glitz and glamor of the night and cherish the memories they are making.  But sadly that isn’t the case worldwide.  Which is why, Night to Shine is so amazing!

What Is Night to Shine?

Night to Shine is an unforgettable prom night experience, centered on God’s love, for people with special needs ages 14 and older. On one night, February 10, 2017, 375 churches, from around the world, hosted Night to Shine for 75,000 honored guests through the support of 150,000 volunteers!

Check out the Official 2017 Night to Shine Highlight Video featuring Gary LeVox of Rascal Flatts below:
https://youtu.be/kfSLyfFwDks

Doesn’t that look like just the best night ever!?  Each invite is treated to the royal treatment and through the night, each one will be crowned King or Queen of the Prom 🙂  How amazing that for this special event, each teen is given their chance to shine, the way they were intended to.  I would love for Jana to experience something like this one day!  Who knows, maybe she’ll even be able to meet her Prince Mikey face-to-face 😉

Learn more, or even help out by checking out this link!  Night to Shine

0

Guest Mama – Bridget’s Story

This week I’d like to introduce you to Megan!  She has the most adorable baby girl who is getting stronger and stronger each day!  I am so glad she was willing to share her story with all of you!

img_5006Our precious girl, Bridget Regan, was born December 5, 2016, but her story began long before that. I was just out of my first trimester when on June 30, 2016, I got a call that would forever change my life. I opted to have NIPT (non-invasive prenatal testing) for no other reason than the test was 100% covered by our insurance. I can promise you that had this test not been covered (it can be quite expensive), I would not have had it done. Without giving it much thought, I figured the test would completely rule me out as a carrier for any kind of disorder or disease; I literally never gave it a thought that my baby may come back with an abnormal test result. Early that June morning, I got the call from my OB that my NIPT testing had come back as high risk for Down syndrome. Even with this news I figured, “oh ok, but what does ‘high risk’ really mean? And I’m sure these test results have false positives all the time…” As the news started to sink in, I scoured the internet for stories of false positives. There were a few, but I quickly realized that the new NIPT testing was far more accurate than the Quad screens of days past. A knot grew in my stomach and in my throat as the reality of what I may be facing quickly hit me like a brick wall. My OB scheduled an appointment for me at a Maternal Fetal clinic to do a full body scan that day.

img_5011I remember the feel of the leather of the couch in the genetic counselor’s office. I remember what she wore, what I wore, the art on the wall, the carpet underneath my shuffling feet, the path down the hall we walked as I felt the tunnel vision closing in on what she was about to tell us. Our baby had a 91% chance of having Down syndrome. She asked us a myriad of questions that no new parent wants to face – did we know anyone with Down syndrome, any history in our families of genetic disorders, and finally the very worst of all – how would we proceed with this pregnancy. Until that question came, I wasn’t listening to all the words she was saying. It’s like I could see the words coming out of her mouth but my heart was in a tailspin of emotion and my mind was trying to catch up with my heart. What did she mean what would we do? This was our precious baby and though the news was heavier than I could have ever imagined, there was no “option” for us. This life was ours to raise and protect to the best of our abilities and not to be discarded based on a preconceived notion of a diagnosis. Our baby is more than worthy.img_5002

Following that conversation, we had a full body scan ultrasound where a heart condition was discovered that all but confirmed the diagnosis. Then a brand new fear crept in as they explained that our baby’s condition was so severe that it would require surgery within six months of life. We’ve been closely followed by cardiology teams since then and Regan is expected to have surgery sometime in March.

Our sweet Regan has now been in our lives for exactly two months and suddenly I couldn’t imagine a world without her. She is gaining weight like a champ and her sweet disposition makes me so proud to call her mine.

img_5050Throughout this journey, I’ve had the pleasure of following other mommas and families of these precious children with Down syndrome. What started as a scary diagnosis opened a window into some of the most supportive and compassionate people I’ve (virtually) met. These first few months with Regan have been such a joy but certainly not without their difficulties. I imagine Regan’s future will be the same: filled with happiness and some stumbling blocks, but I can’t wait to see what it holds for us. The fear of the unknown is washed away when I look into her precious blue eyes and know she’s already changed my heart forever, and I know she’ll change the rest of the world’s hearts too.

3

Dear Birth Mama

1-28Dear Birth Mama

I want to first and foremost say thank you.  Thank you for giving your sweet baby life, and trusting in God to find her a home.  We will never meet, we will never share stories, but I promise you, you will always have a special place in my family.  Because of you, today we celebrate the one year anniversary of our Jana’s adoption day.  The day that officially changed her name from Baby Girl…to Jana Lynn.  You were not there to witness this event, but I can tell you, it was a day full of love and excitement.  Your baby girl is cherished more than I can ever explain.  Not just by the 5 of us, but by everyone she meets.  She is a beautiful, strong, loving, intelligent girl and I am so honored to be able to watch her grow.

1-28-1I wish there was a way to share my thanks with you.  So many people are confused at how a mother can walk away from her baby.  I try to explain I don’t believe that is what you did.  I want to believe that you were scared, but that you loved this tiny beautiful girl enough to put her needs before your own.  I cannot imagine the pain you must have experienced while making this decision.  I pray for you.  I pray that you somehow know that Jana is OK.  That you have been blessed for the blessing you have given us.  I pray your heart has healed from this amazing sacrifice you’ve made.

Today I just want to tell you that Jana is doing amazing.  She is growing and developing more and more each day.  She is strong-willed and determined and has not let this disability dictate her life.  I can see already that this girl is going to do amazing things in the future!  You would be so proud of who she is, I know because I truly am!

Again, thank you…(that phrase is just too small for the gift you have given us isn’t it?! ) We are forever grateful for your love and sacrifice and I promise I will strive every day to be the mama Jana deserves.

We are all eternally grateful for your special gift.

1-28-4