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Guest Mama – Looking Back

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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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Guest Writer – Meet Sarah

image1I am so excited to introduce you to this beautiful young lady!  As a 16 year old, Sarah is an aspiring actress and model.  Like most teens her age, she loves dancing, cheer, being in front of the camera and spending time with her amazing family.  Oh yea!  One more interesting bit about Sarah, she also has Down Syndrome!  I am so proud that Jana has girls like Sarah to look up to.  Sarah is living proof that DS dose not limit someone!!

My name is Sarah. I am 16 years old. I am like you only a little different because I was born with Trisomy 21 (Down syndrome). I love being me! I love who I am! I am just about to finish my first year of high school. Mom and dad worked really hard to get special education to come to the general education classroom because I learn best with general ed. peers. Inclusion isn’t for everyone but I have big dreams! I plan on going to college after high school. I plan to have a job, my own apartment and to get married! It’s hard to get other people to not limit me. School likes to think there are things I can’t do. But, I can do all image2things. It just sometimes takes me a little longer. I’m a very hard worker and mom and dad push me to do my best. They give me lots of opportunities and adventure to help me to achieve my goals and love life!
I was born into my family after my oldest sister died at the age of nine. Mom and dad had three children and when my sister died they were lost and grieving. There will always be a little hole in our family for my sister but I’m the one who brought about hope and healing. I complete my family and know my big sis watches over me everyday!
Mom says a little prayer every time she sends me into high school. It’s a part of her letting go of me and trusting I will be ok.image3
My dream is to be able to walk lots of runways and model. It’s fun to wear cute clothes and makeup! I also love to dance and listen to music. I would love to be an actress on tv. I want to be rich and famous! Next year in high school I will take theater and mom takes me on auditions when the opportunity comes along. Wish there were more opportunities. I haven’t had a paying job yet but I will image4because I believe in me. My family believes in me and the sky is the limit for what my life holds. There are no limitations for people who have Down syndrome. Absolutely none❤️

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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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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!

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And Then There Were 4…

Day 9 of 21 Day Challenge…

Yesterday I really loved sharing with you a little from our kids.  I pray you were able to get a sense of our family and how wonderful our 3 “big kids” are 🙂  So today I wanted to give Daddy a chance to share his thoughts as well.  I’m honored to introduce my guest writer today…my awesome hubby…Juan Benito.

Many people have asked me why we chose to adopt a child, especially since we have 3 biological children. And the follow up question was, “Why would you adopt a child with Down Syndrome?” I hope that I can answer some of those questions with this post and provide insight into the process thus far. First I will clarify that initially our goal was to be foster parents and if any of our foster kids ever came up for adoption then we would be willing to adopt.

I honestly believe that a child should always have a home and home should always be a safe place. I also believe that when the Bible says that we should care for orphans in James, that it means exactly that. Just because I believe that it doesn’t mean that it was simply to accept.

Prior to Jana joining our family, Jen and I had talked about foster care and adoption as something that we wanted to do. However, if you know me then you know that I am a very analytical person. I had a ton of fears that kept me from saying yes. I was worried about our finances, transportation, not having a big enough house, etc. How would we make things work? And to be honest I was comfortable with where we were as a family. I had it all planned out. Jaylen would be turning 18 in 10 years and Jen and I would have all our kids working, or in College, and we would be child free. So why would we start all over.

A few months ago our pastor was talking about how we make promises to help and do things for others but yet fail to act on those promises and at times fail to even do anything. So the challenge was simple; instead of promising to do everything, just do something. The next day I found myself talking to a social worker at work about how many local children were being placed out of county because they didn’t have enough homes to place the kids in local Foster homes. I decided then that I would do something! I would trust God! We (our family) would step out in faith and take care of all the things were within our control and get cleared to be Foster Parents and we would let God take care of the rest. I accepted the fact that God would provide and realized that my selfish desires was not a good enough reason to say no.

Our families desire was to provide a home for whatever child God placed in our care and to love them, for however long they were with us. Growing up I was blessed to have my best friends dad in my life. After a very difficult episode in my life I found myself feeling alone and honestly homeless. My best friends dad’s comment is something that I was never able to forget, “I can’t promise you the world but I can promise you a home”. So we set out to do the same thing. To provide a home and love for whatever child God placed with our family.

I will apologize in advance but because of our pending court case I am unable to provide specific details about our process at this point but I will do the best I can.

I was at work when Jen called me to inform me that our social worker had called to let her know that there was a 2 month old baby that needed a home and they felt we would be a good fit. However, there was a catch. Would we be willing to adopt her, and she had Down Syndrome. I can honestly say that my immediate answer was Yes! I don’t know why, it just was. 3 days later I held Jana for the first time and I knew immediately that we had made the right decision.

As I held her nothing else mattered. I didn’t see a foster child, I didn’t see Down Syndrome, I saw my daughter and I immediately fell in Love with her.

We have had Jana for 3 ½ months now and my love has only grown deeper and I have become the most overprotective father ever. Please understand that it has not always been easy. We have faced many obstacles. Some of those obstacles have been financial, personal fears, legal barriers and at times wanting to punch someone for making inappropriate comments. Despite all that we have faced and the unknown to come I would not change a thing. I cannot imagine our family without Jana in it. Jana has helped us to look beyond our self-centered perspective, our narrow view of life around us and she has helped us step out in faith.

Jen and I have gone to bed at times scared and praying about court dates, Dr’s appointments, assessments, transportation and finances. And God has answered and shown Himself to be faithful and true. That doesn’t mean that all of our prayers have been answered but all of our needs have been provided for and we have seen the Love of God through the actions of those around us.

Many have said that Jana is blessed to have us. Although their intentions are good they are so wrong. We have been and are very blessed to have her in our life. Jana has taught us so much about Life, Love and Faith and she has only been with us for 3 months. I am excited about what is to come and I am looking forward to seeing what God has in store for our beautiful baby girl.

In closing I want to say thank you. Thank you to all of you who have supported our family, have lifted us up in prayer and have loved our Jana.

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