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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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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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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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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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Friends fight school for boy with Down Syndrome

I think it’s my biggest fear.  That Jana will attend school one day and the kids will not accept her.  All we hear about are school bully’s and how horrible kids with disabilities are treated.  I remember being in school and honestly hardly ever interacting with any of the “special ed” kids.

This story brings a smile to my face!!  When a young boy, Brady, was told he could no longer attend the school he had grown up in, his classmates rallied round and fought to keep him there.  Why was he being moved?  Because the school didn’t feel that they were fit to give Brady the schooling he needs.  Unfortunately, this happens quite often.  Children with special needs cost the school more money than typical children do.  So a majority of students are sent to schools that focus on specialized care.

Thankfully Brady was given the OK to attend school with his longtime friends for another year.  This might be something his mother has to continue to fight for.  But it seems to me, Brady’s friendships are worth the fight!

Check out the full article here:  Friends fight school for boy with Down syndrome

“He’s one of the kindest kids in our grade,” proclaimed Owen Armstrong, 10. “Every day, I wake up and I’m looking forward to school because Brady goes there.” “He’s taught me so many things through the time that I’ve known him. … He lights up the room whenever he’s around. He helps people when they’re down,” said Ella Blakeley, 11. “He makes people laugh.”

 

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True Colors

Day 13 of 21 day Challenge….

Big news on our adoption process!!  This Friday our social worker will be coming in to complete our Home Study.  She will come in and walk through our home.  Making sure all safety regulations are in place and that our home seems suitable for a child.  After that point all we need to do is wait!!  If all goes the way I am expecting it, by January Jana will be legally OURS!!  I ask you to please continue to pray for our family.  Pray that things continue to go smoothly and everything is in place.

My pastor sent me this last night.  He often shares wonderful stories of children who have Down’s to help keep us encouraged.  I thought this was very sweet and wanted to share it with you.  I think we sometimes forget that it just takes one person to be brave enough to go against others and befriend those who are lonely.  Even as adults I feel this is something we should remember.  Jesus showed love to the unwanted, the castaways and the forgotten.  So easily it is for us to overlook the lives of those around us.  This video is a great reminder of how it just takes one person to change a life!.