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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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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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People Suck!!

So yesterday was Spread the Word to End the Word day.  A movement to remove the words retard/retarded from our society.  This was suppose to be a day of awareness and support for all these wonderful people who never deserve to be put down.  Just a day for the community to rally around these kids to help make the world safer and more accepting for them.  Sounds great right!?

Unfortunately, there are some mean, cruel, horrible people in our world!  A few families that I follow on Instagram posted beautiful photos of their children and asked others to help end the word.  These kids range from 1 year to 10 years old.  Beautiful little kids with amazing families that love and cherish them.  On these public posts, people actually used yesterday to attack these innocent kids!!  Leaving mean messages about how their kids were not beautiful, how we need to not worry about the r-word because that’s what they are and even some saying they should have been aborted!!  Thank God I didn’t receive any of these horrible comments.  (I would not have been a very good Christian if so!!)  But honestly, how can people be so horrible?!  This wasn’t just one or two people…tons of people purposelessly searched these families out to attack them.  We live in a so-called society of acceptance.  Everyone has to watch what they say.  Make sure they are politically correct and don’t offend anyone.  Yet, these innocent kids are put down by strangers!?  Where is their acceptance?!

This seriously upset me so much!!  How am I suppose to explain this one day to Jana?  When people are mean for no reason, where society would rather her be hidden away then accept her for all her beauty!?  It is just so ridiculous!  It really makes me have very little faith in people.  No child should ever feel that they are worthless and put down by adults.  No matter what their situation is!!  This has to stop!!

OK…my rant is done….   UGH!!