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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 Mama – Meet Olivia

I am honored to introduce you to Marina.  She is a beautiful mama with the most gorgeous girl named Olivia.  Olivia is so full of life, happiness and strength.  I’ve loved watching her grow through her mama’s Instagram feed.  She comes from an amazing family and I am so glad to share just a small bit of who she is with you!  Btw…this post made me break down in tears…so good luck IMG_20170303_201003_387🙂

I love her. I love her so much. When I look at her I speak my thoughts out loud. I tell her how beautiful she is. I squeal when I can hardly stand how cute she is. I’ll scoop her up and squeeze her and smother her in kisses. I swear that her sweet baby smell still releases endorphins in my brain. I think she’s so amazing and so beautiful and so utterly wonderful. This is what I think and feel everyday that I’m with her. And when she’s sleeping or I’m away from her, I miss her and that is what I think about.

IMG_20170302_094606_347Sometimes when I take her places I’ll notice people staring. In that moment I can’t help but imagine what they see. Her little bald head, no eyebrows, no eyelashes. Her little ears, the way they curl in, one more than the other. Her almond eyes. The way they turn up as if an artist over exaggerated their slant. Her teeth, the way they are more crooked than most toddlers. Her tongue, the way it tends to peek out of her mouth more often than not. For a millisecond I can see what they see and my heart feels heavy and beats like thunder. They see ‘imperfection’. They see a child that not only looks different because of Down syndrome but appears to be ill because she has no hair from the Alopecia. It’s a double whammy. In those moments I want to scoop her up and run. I want to turn and yell “Don’t stare at my baby!!!” But I don’t. I manage to control myself and steady my hands and my heart. I manage to adjust my eyes too. Then when that moment passes, when they walk away or better yet, smile, then I can see her again. I can see her clearly. I can see what God sees. My perfect girl. I see her beautiful round head that smells so good. I see her beautiful eyes that twinkle and dance when she smiles. I see her rosy cheeks that are soft and sweet. I see her tiny rosebud mouth and her gorgeous smile. I see her adorable ears that are so kissable and work so perfectly. I see her delicate and doll like button nose. I can see her satiny smooth skin and how perfectly pink it is. Then she takes my breath IMG_20170221_211618_978away.

How could I possibly be so fortunate to be her mommy? What good things have I done to deserve her? She brings us so much joy. She makes us laugh everyday. She makes us do and say a thousand ridiculous things because we’re all so crazy about her. We take such pride in every new word she speaks and in every accomplishment no matter how.small. When she carries her baby doll and kisses it, I want to cry at how tender she is. When she wraps her tiny arms around my neck and presses her soft cheek against mine, I’m sure this must be heaven. My daughter is smart, my daughter is beautiful, my daughter is kind and funny. My daughter loves music. My daughter loves animals and coloring. My daughter loves exploring. My daughter loves popcorn and going to the beach. My daughter loves long car rides and reading books together. My daughter rocks a hair bow like no other. Most importantly, my daughter loves people. My daughter will IMG_20170218_094816_315smile the sweetest smile at the biggest, ugliest, grumpiest, smelliest, foulest person she meets and she will exude genuine love and acceptance with every ounce of her being. My daughter is a blessing and my daughter is way more perfect than I could ever wish her to be.

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Sunday….Funday?

image1Its Sunday morning.  Normally I would be at church, helping my hubby wrangle the kids for children’s church.  Jana would be with us, because we have a theory that each time she in nursery, she gets sick.  It’s probably false, but this girl looks at a hospital and shes sick for days 🙂  So why am I home, sitting on my couch while Jana is overly engrossed by an episode of Princess Elena/Sofia the First crossover (Thank you Disney Jr!).  I’m sick!  I’ve been coughing almost non stop for the past 4 days.  When I start to feel like its going away, it comes back with avenges!  We’ve been praying this doesn’t pass on to her.  So far so good, however she seems to randomly break out in a cough fit just to keep us on our toes.

Overall Jana has been doing pretty good.  I don’t feel like physically a lot has changed.  We are still working diligently to get her to stand on her own.  Once she’s up, she can stand like no ones business.  But getting that momentum up is her struggle.  I’m expecting her to just stand up in the middle of the room one day, holding on to nothing and just look at me like “What’s the big deal?  I’ve always known how to do this, just didn’t want to!”  She also has mastered sitting “criss-cross-apple-sauce” while reading.  She’s always kind of crossed her legs while sitting, but now its intentional in order for her to get closer to what she wants.  Her daddy was very impressed 🙂

We haven’t been having as much struggles with food lately either.  She seemed to just realize food was yummy and now wants everything.  Her morning staple is now 2 Eggo waffles.  Yes, 2 whole waffles!!  She throws a fit if I give her any less.  Unfortunately, she has discovered she can chew much better if she actually uses her 3 front teeth not just attempt to swallow her food whole.  This means, each bite I give her she takes it out and holds it to the front of her mouth to chew.  It takes forever!!!  This morning it took 35 minutes!!  I must be doing something wrong.  Isn’t the same as when your puppy training.  I mean, I’m suppose to let her eat as much as she can in 5 min and then move her bowl to the counter right?  Hmmmm….

Lastly, this coming Friday we have our ENT apt.  Not bad considering our original apt. was set for March 30th.  Helps when the doctor puts in a good word for you!  This will help us determine what steps we need to take with Jana’s sleeping issue.  He might be against surgery right now and we’ll take a different rout.  He might say she needs the surgery ASAP and get it all scheduled.  Both scenarios make me nervous!  She also sees her cardiologist next month for an EKG.  This will make sure the two small holes in her heart are closing properly and that surgery is not needed.  She sees her eye doctor in March, this will determine if glasses are needed yet.  We return to the Down Syndrome Clinic in April for her yearly check up.  And finally, another sleep study is scheduled for June.  Because the wait list is SOOO long for the study, her pulmonologist thought it would be good to get her on the books.  No matter what outcome comes form the ENT, a study will help see if treatment worked.  (Another night hooked up to millions of wires and very little sleep?  Sign me up!!)  She is a very busy girl!

img_8080OH!  One more big day up ahead!  The 28th of this month marks the one year anniversary of her adoption date!!  I’m not considering this her “Gattcha Day” because I feel like June 25th is that.  But it is still a day of celebration!  Planning all of Jana’s things: pancakes, Princess Elena, taking a walk in the stroller, playing some Peek-a-Boo and ending the day with a pile of french fries and Coconut Milk ice cream! (Sounds weird but its lactose free and honestly taste amazing!)  She’ll have a blast 🙂

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Another trip to the ER

img_7462So yesterday Juan and I drove Jana 2 hours to take her to the Rady Children’s Hospital ER.  All last week she had been sick and was already on an antibiotic.  Se had seemed to be getting better.  However, from Thanksgiving on, she seemed to be worse.  Just not feeling herself, coughing a lot and then we noticed her skin tone was off.  With her heart problems, she has always had some circulation issues.  Usually it goes right away, however she just didn’t have good color or circulation.  We decided to just take her in.  Luckily, there was nothing wrong!  The doctors felt that this is all from her upper respiratory infection.  It has been the first time we’ve made the trip for basically no reason.  Which to me, is pretty awesome!  I am planning on contacting her cardiologist to see if we can bump her apt up from February.  That’s a little tough though cause they are very busy.

Before we took off we had to stop for gas.  I laughed to myself because from the  gas station, I could see our local hospital.  We were one block away, but taking a 112 mile trip instead.  Do we have the best medical care where we live, no.  But that honestly isn’t the reason.  Jana is not a typical child.  She has other health issues that Down Syndrome has caused.  So far we haven’t had very much luck locally when she has needed emergency care.  We trust Rady’s.  They have access to all her specialist, all her testing, and a better understanding of her health concerns.

When we met with the doctor, we went through Jana’s history with her.  We explained our concerns, what we’ve been doing about them and what we thought was wrong.  She told us we seemed to really be on it and educated about her health.  Part of me felt like saying, “We have to!”  Never with the big kids did I feel like we had to fight to make sure they got the help they needed.  We basically have to know what Jana’s conditions are, what medical treatments help, and why she is having issues.  Honestly, there have been times where we feel somewhat more educated than the people who are there to help her.  But this is our job!  Our job as her parents to make sure she gets the care she needs!  We are the ones who have to petition for her therapies, apts, and services.  Our job as DS parents is to connect with other parents, to ask questions, to read and research, to allow others to help and be involved in raising Jana.

But you know what…all of it is worth it!  The arguing with providers, the traveling, stress, worries, the waiting, it is all worth it to make sure Jana is the best she can possibly be.  I would move the world for this girl!  She makes our lives not only a little more interesting, but also full of love and smiles.  She is So Totally Worth It!     jana2

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Buddy Walk 2016

img_6917This weekend was our second Buddy Walk.  This year we had almost 60 people walking in Team Jana!!  It was a beautiful morning and I think everyone had a lot of fun.

Honestly, before the walk started, I caught myself looking around at all our friends and family wearing their “TEAM JANA” shirts.  I was so proud to be her mom!  Seriously, how did we get so lucky to be this amazing girls parents?!  She has changed not only our families lives, but the lives of those around her.  Because of her, she has opened doors to new friendships and new experiences.  I’ve said it before, but honestly, if you spend more than 5 min with this girl you are in love!  She has a way of captivating others around her.  I haven’t met really anyone who did not stop to gush over how incredible she is.  And she’s mine!!!  How lucky are we that God thought we were the right choice for her?!  It just blows me away still.

This month we were able to raise $400 to send to the twins George and Grace (Read more here!).  Its not much but I am hoping it will do something to raise their spirits a little.  If you would like to still donate to this adorable family, please let me know and I will direct you on how to do that!!

Lastly, I just want to thank everyone who joined us this Saturday in support of Jana.  Your love means the world to us and we are so glad Jana has so many supporters who love her.  We are honored to have you in our lives!!

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TEAM JANA

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Chasing Dreams

2016-10-16-150553Its been a while since I’ve posted.  Jana is doing amazing!!  Crawling like crazy now and making my days even more interesting 🙂  Currently she is battling a small cold that we are hoping goes away very quickly.  She is getting stronger and even more amazing each day!

Today I wanted to open up a little.  For as long as I can remember, I have never been more confident and comfortable than when I am behind a camera.  When I have a camera in my hands, I feel at peace and stress free regardless  of my environment.  I’ve worked at studios, ran a studio from our garage, taken pictures in fields and been a part of some beautiful weddings.  It has always been a side job and not a full time job the way I’ve dreamed about, until recently.  I have an opportunity to open my own photo studio.  I will be able to run it the way I want it ran, hours will be set by me and I will be able to capture the images I dream about, every single day!  To most people this is a perfect dream come true!  To me, it has been terrifying!!  Don’t get me wrong, I am so excited at this possibility, but so many fears come along with it.  Funny thing is, all the financial responsibilities, stress of running a business, all the planning, none of those things scare me as much as having a dream that doesn’t revolve around Jana.

For the past 16 months, my entire life has revolved around Jana.  I am with her almost 24 hours a day, 7 days a week.  I can probably count how many times we’ve been apart!  I’ve devoted my life to her, to being the best mama and support she could have.  My other kiddos are older and honestly just don’t really need me as much as she does.  And that’s great!!  That’s how it is suppose to be.  But Jana will always be different.  How can I pursue something that she might never have a part of?  I feel selfish, I feel regret for the time I already know I’ll be away, I feel fear that I wont be there when she needs me.

Last night Juan and I talked about this.  I told him, I have no right to chase my dreams, when she needs me.  Juan’s response was, “she might never stop needing you and your support,  But that’s ok…it doesn’t mean that your dreams need to stop because of her.”  I know he want’s me to do this…he believes in me more than anyone else.  But I wasn’t sure if he really got it.  Then today he sent me this: My Reason To Dream  It’s a blog post dealing with almost the exact same situation I am in.  This mama has a beautiful little boy named Jude.  She is a mama of a special needs child, just like I am.  For the past 2 1/2 years, she has put her life on hold as well to be there for her boy.  Now, she is, like me, is scared to start pursuing her dreams.  Turns out there are a ton of mamas out there feeling the exact same way!  All their dreams are different, but the fear is the same, what if our babies need us!?  Having a special needs child is so much different that having a typical one.  Anything can go wrong, anything can happen!  What if me pursing my dream takes away time with her and she doesn’t reach her goals and mile stones like we have planned?  What if me being away holds her back from reaching her dreams?!  2016-10-16-150452

Juan tells me that me doing this will open doors for Jana in the future.  She knows how much I love the camera, since I have one in her face basically every day lol.  I do want her to see that dreams can come true.  That with work, patience and perseverance, she can do whatever it is she dreams to do.  I want to be that example for her, to be the fighter that she is teaching me to be.  Jana has showed me that when things are hard, you just keep going!  You push more and more, and rely on the others around to help us out.  She is my motivation to be better!

So where do I go from here?  Do I allow myself this selfish venture?  Do I chase after my dream…where the possibilities are still unknown?  I think I am starting to learn that as a mother of a special needs child, my dreams will always be a part of hers.

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Milestones

So I shared with all of you recently that Jana is now officially moving herself into sit position like a pro (check it out here if you missed it).  It seems like these past two weeks something clicked and she has reached a few more milestones!  It all has happened at perfect timing because honestly, I was starting to get discouraged.  Jana had seemed to be at a stand still for a few months and from what our physical therapist tells me, its completely normal.  But seeing some progress really helps motivate me to keep pushing her.

First thing that happened this past week is that she started finally sucking!  Lol…I’m not sure how else to start that, so let me explain.  I’ve been working with her on using a straw for months now.  Straw drinking is encouraged for DS babies because it uses different muscles in their mouths.  Thus, helping them be able to have better control of their mouths and tongue.  I’ve gone through about 4-5 different cups, even one that is “geared” for DS IMG_4855kids that cost me $15!  None of them worked though.  She just couldn’t get the concept of sucking.  Until one day…she did!  It started with a small disposable kids cup (you know the ones they give you at restaurants) and it was only once very quickly.  So I moved over to trying to get her to eat out of the squeeze pouches.  I’ve heard this is sometimes easy. And we had success!!  She ate it like a pro and this had made meal time so much more easier on both of us!!  Now she is drinking out of any straws and loves that she can do it on her own.  We even purchased this adorable Minnie Mouse straw that is an obvious hit!  Check out her sucking skills here:

Second IMG_4835milestone was at physical therapy.  We’ve always tried to get Jana to do some time on her knees but she would either sit on her feet or lean on everything with her chin and go limp.  She did not see the purpose of messing up her beautiful little knees 🙂  But on Wed at therapy, without any complaining at all, Jana went straight on her knees.  Balancing herself and was even able to move back into sit position!  This was so great to see!  She realized she could use both her hands and be high enough to reach the toys in view.  Her therapist was so proud of her…and so was I 🙂  This will help her prepare her muscles for crawling soon!!

 

Lastly, I wanted to share this with you…this isn’t a milestone at all but still pretty IMG_4849awesome.  Yesterday was Jojo’s 15th birthday.  I was going through baby pictures of him and found this.  Jojo is about 5 months old in this photo and Jana is 14 months.  Instantly looking at Joeys pictures, I saw how much they look alike!  I always felt like she looked like Jaylen.  They have the same skin tone and cute little button noses.  But I never tied her into the boys.  Until now!  It is so amazing to see how much they resemble each other.  Honestly, people never question if she is mine or not.  I feel like she fits in our family almost perfectly.  Now don’t get me wrong, I think an amazing part of adoption is the differences that make a family beautiful.  When different races are brought together with pure love!  But maybe God knew what a tough first month Jana would have and just wanted her to feel like she finally fit.  Maybe we were suppose to just always be her forever family.  Whatever it was, she was perfect for us…and one day when we share her adoption story with her, seeing pictures like this will help her see how much God had a plan for her.