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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!!

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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.

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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!!

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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

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On the Move

2-10-2Last time I gave a therapy update, Jana was still struggling to stand on her own and just started taking a few steps.  What a difference a few months makes!!  Jana officially can stand on her own and pull up on just about everything.  She officially started climbing up steps and making my days even more interesting.  She can walk pretty decent amount with just holding my hands or using her walker given to her by her physical therapist.  This girl is on the move and nothing is getting in her way!!  It is so amazing to see her working so hard to reach her goals.  In the past week alone, I’ve seen a huge change in her confidence and strength.  She is constantly freaking us out by climbing on furniture and getting herself in tight spots.

I found this online:

The average age to begin walking in a child with down syndrome is 25 months (with a range of 14-42 months), versus a child without down syndrome, where the average age is 13 months with a normal range of 9-17 months.

2-8-1So Jana is actually above the curve from her DS buddies in walking, and just a little behind her typical friends.  I am so so proud of her!!  At times it is still tough.  To watch her try so hard but still not be able to do it.  I can see her little brain telling her tiny body what to do, but it still not working.  There are times she gets very frustrated and just tries to give up.  But she is stubborn and independent, so not much stops her from reaching her goals.  (Even as I type this she is trying to figure out how to climb onto the couch so she can take my computer away 🙂 )

I don’t see her having to use the walker for long.  But if she does, that will be perfectly fine.  She is proud of the steps she can take unassisted and it helps bring more independence in her life.  I know when people see it with her, it confuses them.  I mean really, the walker screams SPECIAL NEEDS CHILD!!  But you know what, when I see her beautiful face light up when she can move on her own, I don’t care what anyone thinks!  My girl is perfect just the way she is!  And if people are uncomfortable with that, then thats just too bad 😉

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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.

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Guest Mama – Mikey’s Story

I’d like to introduce you to Laura.  She is a beautiful mama I have had the honor to befriend through our Instagram Community.  Her little boy Mikey is just a few months older than Jana and is the cutesiest thing 🙂  I’ve asked her to share her story with all of you.  I hope to feature a new mama every week or so.  I’m so proud of the DS community friendships I’ve developed and know that these mama’s have a lot to share!! pics-from-jakes-phone-058

I found out I was pregnant with Mikey in the beginning of July, 2014. My husband and I were excited! We already had names picked out for either gender. My Dr offered to do genetic testing, but I declined it. We had a twenty week scan to find out the gender of our first baby. Our fingers were crossed for a boy. We really wanted our first baby to be a boy. The tech put the results in an envelope. We found out our baby was a boy a few days later at a gender reveal party. We were so excited!!!

We went to the birthing center on March 28, 2015 to have our baby boy. I was so nervous and excited! 17 hours later at 11:59 pm, Michael James Snyder entered the world! I was so happy and exhausted. All I could do was stare at him! He was perfect and he looked exactly like his daddy!
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The next morning the pediatrician came in to do an examination on him. When she completed the exam, she told us that Michael had Down Syndrome. She didn’t offer any information or assign us a social worker. She just walked out. I put on a pretty brave face, but I felt shattered. My husband was solid as a rock, but I was a hot mess! It wasn’t because he had a disability, I was just very scared. I didn’t know what to expect. I had no idea that what terrified me at the moment would turn out to be the biggest blessing and our greatest adventure!

Michael has some developmental delays and some health issues, but he has a wonderful team of doctors and therapists that help us to help him reach his goals. Those are things we do to help keep him healthy and to reach his full potential. img_4575

Michael is such a pure joy to be around! He has shown us what true love is. He has such determination and grit! He works hard every day to do things that his other baby friends can do without a problem, but he always does it with a smile on his face! He’s taught us so much.

We recently had another baby. Michael adores his new baby sister! He showers her with hugs and kisses, brings her a toy or her binky when she’s sad, and steals her formula if I set it down where he can get it. He tries to crawl in her swing or bouncer with her to cuddle, then he’ll steal her blanket when I’m not looking. They smile at each other one minute, then make each other cry the next. He’s a typical big brother. I can see already that they will have a strong bond. I can also see them getting into a lot of trouble together. Hey, someone has to keep mamma on her toes, right?
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There are many days that go by that I wonder “What if?” What if I would have known about his diagnosis before he was born? What if I would have known what I know now after he was born and we received his diagnosis? Would I still have spent the first few months crying at some point each day? Would I have been so afraid? Honestly, I don’t know. I believe that God does everything for a reason. I can’t go back and wonder “What if?” When I know that through all of this we have become stronger. My relationship with my husband is stronger, my relationship with God is stronger and I’ve developed amazing friendships with so many families in the Down Syndrome community.
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I think the most important thing I would tell any parent that has received a Down Syndrome diagnosis is: Process those emotions and don’t feel guilty about it. It’s okay to grieve. It’s okay to be scared. It’s even okay to be a little angry. At some point all of those powerful and overwhelming emotions will turn into an incredibly strong love for your child. Support, encourage and nurture your baby! It takes a special person to raise such a unique individual! Sit back, relax and enjoy the ride!