0

Guest Mama – Looking Back

caleb7

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

0

It’s been awhile

IMG_0001I know…I’ve totally failed at keeping this blog up and active.  Like I’ve mentioned before, I try to write when it comes natural.  However, sometimes that happens when I am completely busy, or it just doesn’t happen.  But I did have some time today and had a few things on my mind.

First of all, for those of you who don’t follow our Instagram (I try to post daily updates of Peanut there) Peanut is still not walking on her own 😦  She is doing great at using her walker or even holding someones hands to walk, but the desire to do it alone just isn’t there.  We are currently still seeing Betty, our physical therapist, only twice a month.  This is all because physically, there is no reason for Peanut to not walk.  She doesn’t have the determination to do it yet.  So that means, a lot of pushing at home is what needs to happen.  We try to make her walk as much as possible and it seems to sometimes be working.  She can now at least push her walker on her own and actually gets mad at us for helping her 🙂

IMG_0011We have a few important doctor’s visits up ahead.  This coming Tuesday she will go to the Down Syndrome clinic.  This is where  she’ll see 7 different specialist in about 4 hours.  Its a super busy and long morning, but we get so much out of it!  A few concerns we have right now: the fact that she still is not getting any OT therapy and that she has recently started throwing up quite often.  Sometimes its when she drinks a lot of water, others its just random.  We’re not sure if its an allergy or a digestive issue.  So that is one big thing we plan on bringing up.  Later this month she also sees her ENT again.  This should be the apt that we schedule her tonsillectomy and adenoid removal surgeries.  Praying this surgery helps her sleep better!!

Ok, so here is something that has really affected us as a couple since Jana has entered our lives.  We now have 4 kids, so I know getting baby sitters in general are difficult for that.  However, I know that isn’t the only issue.  We’ve had people (usually grandparents) watch them for short periods, and I have had a total of 4 nights away from her. (three was because we had out of town youth trips)  Why is this?  Because no one wants to watch her overnight!  Yes, she has sleeping issues, and she has a routine that helps to stick to as close as possible.  But these things are not because she is a difficult child, they are because of the Down Syndrome.  So far my MIL is the only one who has stayed overnight.  The problem is, she will only watch them here in our home to make it easier on Jana.  Which I totally get and appreciate, but that means in order for Juan and I to have any nights alone, we have to get a hotel.  Well, now on a youth pastors salary, that doesn’t seem very responsible most times.  So we stay home.  We make a point to try to connect with small coffee dates, but sometimes that just isn’t enough.  It’s definitely put a strain on our marriage.  Let me take a moment, I am in NO way complaining that our friends and family don’t help.  Often times they offer and we turn them down.  Because honestly, sometimes its just easier to keep her routine then change things up.  I’m also not blaming Peanut for any of this.  This baby sitting thing is just something I’ve felt has been very different than with the other kids.  I think sometimes Juan and I are overprotective of her (Juan more so than me lol) and maybe that makes others nervous about watching her.  It’s just hard because I don’t see her as any different than the big kids, but in reality, she is!  Down Syndrome has affected everything about her, good and bad.  So no matter what, she will always be treated slightly different than other kids.  No matter how much we don’t want that to happen, it just will.  Have any of you other DS mama’s struggled with getting sitters??

IMG_9961I don’t know, it kinda just seems like I’m rambling here a bit, and if I am, I’m sorry!  Sometimes it still feels like we are alone in all of this, I desperately wish the support group in our area was active!

BTW…Peanut’s 2nd birthday is this coming Monday the 22nd!!  We are so excited, but unfortunately celebrating is put on hold a little.  We are currently in the process of moving…again!  We are hoping to take a family trip soon to celebrate not only her day, but big sister Jaylen’s 11th bday that was on the 12th.  May is a crazy month for us!!

 

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

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

1

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 😉