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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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Down Syndrome Center

First of all, I was planning on posting this on Wednesday, but we just moved and my laptop was placed in a random box.  Thought it was lost forever, we finally found it last night!  Anyways…

This past Tuesday Jana had another trip to the Down Syndrome Center.  This is the awesome center she has visited twice before.  We are there for about 4 hours, but we see 6 different specialist.  Its one of our favorite visits because we get so much accomplished!  We started with seeing the Occupational and Physical therapist.  First of all, they were very happy with Jana’s progress.  They feel she is making great improvements and they gave us some tips and exercises to help move the walking progress along.  Also, they submitted a referral for Jana to receive Occupational Therapy there in San Diego.  It means that we will have to take the 2 hour trip every two weeks or so for her to receive the service, but it is not offered in our area and  I know it will benefit her.

The dentist was happy with her teeth and found out she has 10 teeth now!  We haven’t been able to count good because she bits us each time we are close lol.  They want us to schedule an appointment at the dental clinic at the hospital.  Nothing to worry about, just starting her on a healthy check up plan.

We were able to see the Speech therapist.  She was happy with Jana’s progress but knew there was more that could be done.  Our local regional center doesn’t feel a speech evaluation should be done before the age of 3.  The specialist at Rady’s did not agree!  So a referral was put in for her to be fully evaluated as well as be put into a special play group/speech program.  Yup that means another 2 hour trip at least twice a month for this service.  I’m hoping somehow magically they can be on the same day, but even if they aren’t she is worth it!     IMG_0078

Next on to Nutrition!  For the past year I’ve been bringing up the point that she hasn’t gained much weight.  She has been pretty consistently around the 18.6-19.2 lbs range.  Obviously that doesn’t seem right.  Finally someone agreed with me!  The nutritionist was worried that maybe her body is not digesting her food properly therefore she is loosing nutrition.  This would explain the throwing up often as well as the horribly stinky diapers (seriously!)  So she want’s Jana to see a GI Specialist to see what they suggest.  From there possible testing will be done such as x-ray or even a biopsy of her lower intestines.  She also gave us some pointers on some Lactose free products to try to help raise her calcium intake.

Finally we ended our trip with the Pediatric Specialist.  This was a new young doctor who recently took over the Pediatric Down Syndrome Department.  She was amazing and Jana just loved her!  We received a referral for her to possibly start taking Jana to a pediatrician in San Diego.  That way they will have access to all her hospital visits and updates.  And truthfully, she would receive overall better care.  (Yup, means possibly more 2 hour trips!)  She agreed with the nutritionist and felt Jana would benefit from seeing a GI specialist.  She also wanted to run blood work to check her normal hemoglobin count as well as rule out possible Celiac disease.  This would be a gluten allergy and could explain the low body weight.  So after we finished with the clinic we IMG_0083went right over to have her blood work done.  I have to say, my girl is MUCH stronger than me.  I am such a chicken with needles, yes even after 3 births, a spinal tap and a tattoo, needles freak me out!  But my girl took it like a champ.  She watch everything the nurse was doing and even held her arm still.  While sitting in Daddy’s lap (I wasn’t about to force her to do that!) she didn’t even whimper!  The nurse was impressed 🙂

So the next day the Pediatrician called us to inform us that Jana is clear of Celiac disease!  They are having us run more blood work when we go up this coming Wednesday for her ENT apt.  This is to hopefully rule our more things. 

So I’d say this was a very successful trip to the Down Syndrome Clinic.  It was a long day but truthful we got so much taken care of it was all worth it.  It is easy to complain about the possible trips we will be adding to San Diego.  The cost of gas, the time to travel, the re-arranging our schedule.  It’s very easy to see that all as a negative.  But I know there are a lot of mamas who wish they had the option to take those trips.  They have missing parts in their hearts from the little ones who were taken too soon.  This past year our DS community has lost a handful of beautiful babies and I need to remember to be grateful for all the annoying appointments, the long car rides, the countless phone calls and arguments to get her services.  All of it is because Jana is here!  She is mine and she is worth all of it!  None of us are guaranteed another day and I need to remember plenty of mamas would take my place if they could.  This past week especially I have tried to truly cherish my time with Jana.  With all our babies actually!  Life is so precious and things we least expect can come our way.  So, do me a favor, if you reading this and you have children at home, stop and make sure you hug them a little longer than normal.  Kiss their sweet faces and make sure you savor their smell.  Cherish every moment you have.  We are all so blessed to have the chance to continue to do these simple acts.

 

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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!!

 

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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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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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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.

 

 

 

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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.