Could you have even imagined?!

Not even in my wildest dreams could I have even imagined this when Ariana was born. It was just one of those things that seemed so impossible, so crazy that it wasn’t even on my radar.

Are you guys ready for this????

Ariana will be walking in her first ever fashion show!! She’ll be walking down the runway for Zappos Adaptive wear and Runway Of Dreams Foundation. I can’t put into words just how I feel exactly. Proud. Excited. Anxious. Scared. I want to throw up and dance all at the same time. This is her first show ever and I’m hoping it won’t be her last.

Since Ariana’s birth in 2014 things in the Down syndrome community have been shifting. Inclusiveness is an at all time high in 2018 and I have so much hope for 2019. People with Down syndrome are acting, dancing, playing instruments, modeling etc. People with Down syndrome right now are paving the way for future children being born with Down syndrome. It’s fucking amazing and I’m in awe over it all. Like mouth wide open, jaw on the floor in awe.

Social media is such an influential and vital part of it all. You’re seeing the faces, you’re hearing their stories and you’re connecting with people of all kinds of abilities because the internet gives us the ease of being able to see into someone else’s life. We see their struggles and their triumphs. I really do feel like empathy is at an all time high. For some strangers to be able to understand and appreciate how hard our kids have to work to reach anything in life is such a relief! And I know we are making those connections because of all the social media platforms available.

Although the internet/social media can be a scary, mean place. It can really rip someone like Ariana to pieces. People can be cruel and cold. Ariana is amazing and I’ll be damned if I let anyone tell me otherwise.

In 2015 Madeline Stuart demolished barriers by becoming the worlds first model with Down syndrome. She’s walked the runway in New York fashion week and was featured in VOGUE. Can you even believe? I’m telling you if I could tell myself all of this on June 6, 2014 I would have fallen out my chair because I would have known that was just impossible.

Here’s a link to Madeline’s vogue article

https://www.google.com/amp/s/www.vogue.com.au/fashion/news/meet-australian-madeline-stuart-the-worlds-first-professional-model-with-down-syndrome/news-story/c90e9224d9586e7840362a9ea0a4bf8a/amp

Things have changed tremendously since Ariana has been born and I know there’s no stopping the change. People with Down syndrome are here, front and center. Demanding attention and I am here for allllllllll of it.

Hello my lonely blog. I have returned once again and here’s hoping to being better at actually blogging this 2019.

Here’s the thing. My life is busy. Like busy, busy. I want to blog I really do but wanting to and actually being able to sit and write is a task in itself. I have a million notes in my phone that i “write down” so I won’t forget so that I can come back to that topic and write this amazing blog that invites you into my life and my kids life. Where someone will read it and they’ll go “ahh. That made me really like her and really made me see that Down syndrome is pretty darn amazing.”

Well, Down syndrome is pretty darn amazing but me actually getting my life down on paper and our family life on paper is hard. Exhausting. I don’t know how like real bloggers do it? How do you find the time? And the topics? How? I mean, where?! Because I am having a three year dry spell and I don’t know?…. I’ll go back to my notes and talk myself out of writing about it because it’s just not all that great of a topic or it is and I can’t put it into words. Ugh. I’m a mess. My life’s a mess. But not a bad mess it’s the kind of mess where you know where everything is. You get what I’m saying right? Right.

So back to topics. Here’s one. Why is my life so less “affected”(?) by Down syndrome than I thought it would be when we first received Ariana’s diagnoses. Ariana’s diagnoses felt like the first domino falling in a long line of dominoes. I was so sure that the dominoes would never stop falling. Misinformation and fear made me certain of this. I was so terrified what our future would look like, that I took a seat and made myself real comfortable in my own pity party. I was so certain that our life was going to be this crazy super-hard, unwinnable battle forever.

But… our lives aren’t hard. And I feel like that battle has been won. She is living the life I dreamt of, the life I hoped for when I was pregnant with Ariana. All the dreams and wants that I had tucked away due to fear and doubt have been pulled out and have been displayed front and center for her.

Down syndrome is only a small piece to the puzzle but an essential piece. I am not trying to down play Down syndrome. It is beautiful. But it is also ugly. The difficulties are there. The struggles are there. The heartache is there. Just not as predominant. It doesn’t consume Ariana. She is so much more than all of it. She’s everything.

Our days are still crazy but that’s because I have three kids! A 7 year old who thinks she’s 17. A 4 year old who runs the house, and a 1 year old who runs me *sigh* a boyfriend who works too much (super thankful that he does), a ridiculously busy schedule (have I mentioned I have a busy schedule?” and I’m pretty sure I’ve been sleep deprived for the last 7 years. Moms tired and a little crazy herself.

So here’s to 2019.

May I blog some more.

May my life remain crazy.

And may Down syndrome continue to bless me.

Baby #3

Late August we welcomed our third and final daughter, Axl Elise Bautista. One day while we were having a random conversation about a random topic Axl’s upcoming birth came up. I was asked if I was nervous and how I felt about having another baby after I had Ariana. I was told more than once that “I would never have more kids after that” or “Don’t have anymore kids after this one it’ll be too hard”.  Its almost unimaginable to some people to have MORE children after a diagnosis like Down syndrome. Down syndrome didn’t magically end our desires to expand our family.

Down syndrome is many things but scary is not one of them. The fear of having another child with Down syndrome was never there. We just decided that if God believes us worthy for another child with Down syndrome who are we to decline such honor?

At about 19 weeks into my pregnancy I was referred to be seen by a high risk pregnancy doctor because of Ariana’s diagnosis. We initially declined being seen but then we were told we could just get 2 detailed ultrasounds done instead of any invasive testing. I mean, 2 extra ultrasounds? sign me up! The first ultrasound was like any typical ultrasound. The tech looked at all her organs and everything checked out. I mentioned that Ariana was born with two holes in her heart so they decided to bring me back for a detailed ultrasound of her heart.

At 20 weeks on our 2nd ultrasound we looked at Axl’s heart. It was beautiful and complete. The tech then moved on to the rest of her organs just to take another quick look. The tech ended up finding something we were both not expecting. Axl had a blood clot in her umbilical cord. I remember not understanding anything that the doctor was explaining to me. My ears started ringing and my palms were sweaty. The doctor was trying to explain herself and I just couldn’t understand her. Then she said “There is a chance your baby can die at any moment. We have to start weekly monitoring.” That I understood.

My mind instantly went into panic and the why’s just kept coming. Why can’t I make healthy babies? Why does this keep happening to me? Why my baby? and then the biggest question of all, Is she going to die before she gets a chance?

At that very moment I prayed for Down syndrome. I prayed for the very thing everyone was afraid of. I prayed that God would spare her life and let her arrive into my arms.

I wasn’t afraid of Axl being born with some genetic disorder I was afraid that she wouldn’t be born at all.

I went to monitoring for the next 17 weeks.

My whole pregnancy full of paranoia and questions. I couldn’t enjoy my belly or the joys of pregnancy. I just wanted her out right now. I just needed her out.

Axl was finally born on August 25th. I was a nervous wreck that whole day. I couldn’t believe that we made it thru this. I couldn’t believe that I was going to be able to hold my baby. All I wanted to do was look into her eyes. I just needed to see her looking back at me.

When I heard her first cry I just couldn’t contain myself. My baby is here! She made it! Thank you God! Her eyes finally met mine. Her skin finally felt mine. Her first breath was also mine.

Down syndrome was everyone’s fear for this new baby. But the world is so much more bigger than that. I have always said to people that Ariana was born with Down syndrome but at least she was born. Now this rings true for Axl also. At least she was born. At least she is here.

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You are my miracle. My sweet baby, momma loves you forever.

 

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First day of Pre-K 

Yesterday my littlest started Pre-K. It has been a roller coaster of emotions & challenges to finally get her here. 

 I started the day a nervous wreck. But I’m ending the school day with my heart full & my mind at peace. Mrs.Murphy, Ariana’s teacher was amazing. She answered every single question that we had. She was more than accommodating to our requests & concerns. She allowed us to stay present in the classroom until we felt comfortable. 

 The aide, Ms.Jimenez instantly took to Ariana & that just really helped calm my mom nerves. Ariana’s the smallest & youngest in her classroom but she instantly took charge of the classroom. She’s the smallest but by far the biggest handful.

 Ariana is in a “self-contained” classroom meaning she is in a small classroom of a total of 7 students with special needs. We felt like this was the best choice for her at this stage in her life. We’re hopeful & excited for her to thrive in her new classroom environment. 

Alopecia Areata update 

Ariana has been on medication since she was diagnosed with alopecia & we are already seeing some results. She definitely still has bald spots & new ones are appearing faster than her hair is growing. but she does have some hair regrowth & we’re so excited to see some change!


I was so scared of doing Ariana’s hair once we noticed her hair falling out. Like terrified. I thought it was all entirely my fault. I blamed myself & I just kept thinking maybe I just pulled too hard or I brushed too rough. Maybe I messed with her hair too much & now it’s all falling out because of me! 

I actually stopped doing her hair for awhile and I would avoid brushing it. Once she saw the Dermotologist & he confirmed that she did have Alopecia Areata one of the many questions I asked him that day was if I had anything to do with it. & he just looked me straight in the eyes & he said “mom, you had absolutely nothing to do with this. This is just something that happens” 

You guys… once I got into my car I totally Kim Kardashian ugly cried because I felt like an incredible weight had been lifted off of my shoulders. 

Ariana is so resilient I’m in disbelief that this kid is all mine. She’s amazing & strong & nothing gets in this girls way especially something like hair loss. 

Alopecia Areata 

We recently started noticing Ariana’s hair thinning and some light fall out. Nothing raised any red flags until patches of hair started to fall out and not grow back. She now has about maybe 4-5 bald spots on her head. 

Her pediatrician thought it would be a good idea to get her thyroid tested as that could also cause hair loss. So we had her blood tested to check her thyroid and some other things & everything came back normal. Actually pretty perfect. 

Once everything on her pediatricians list was checked off and still no answers as to why the hair loss/bald spots. Ariana was referred to a Dermotologist. & finally after 2 months of waiting for tests results, blood work to be done & to actually get into the Dermotologist office (busy office & scheduling was a nightmare) we have answers. 

On Tuesday Ariana was diagnosed with Alopecia Areata


Alopecia areata is a condition of hair loss caused by the body’s immune system attacking the hair follicles. 

I already had a feeling that this was what was happening with Ariana. I don’t really have any answers to what extent this will go to. We don’t know if it will progress and if she will lose more hair. We don’t know if she’ll lose all of her hair. It might grow back or it might not. 

The Dermotologist basically told me that everyone is different and that he does not have many answers for us. He prescribed some medication for Ariana. An ointment that I rub on her patches every night after bath time. & even then he told me not to get too excited that this might help or might not. That we wouldn’t really know if it’s working until we see progress which can take up to a year. 

& if I’m being 100% honest with you guys I am a tiny bit sad. I’m sad that Ariana is going to have to deal with more. Just more of everything. More stares. More pity. More judgments.

But at the end of the day Ariana is beautiful with or without hair this I know. I know that this is just something else she’s going to rock because that’s just who she is. I know she will be okay. & I know that this is just not a big deal. Because it is just hair. & she will be okay if it grows back or doesn’t. 

Hair is just hair & Ariana will always be Ariana with or without it.

IEP results meeting

Ariana’s IEP results meeting was yesterday. The meeting was 2 hours long with a lot of information and a lot to process. We reviewed Ariana’s psychoeducational assessment, health assessment, & speech/language assessment. We discussed her IEP and the type of classroom environment that would suit Ariana the best. 

The meeting was going great and we were in agreement with the IEP that had been set. Until we started discussing her in-class toilet training goals. A couple of posts ago I spoke on how we are working on potty training at home because I personally do not feel comfortable with her being potty trained at school. It basically all went down hill from there. 

The head director had to join us in the meeting because we could not come up with a plan that kept us in our comfort zone and that would best fit Ariana’s needs. I even started crying. It was just too much. I felt like I was drowning and I couldn’t be loud enough to be heard. I already felt like I failed Ariana and we had just begun this new journey with her. 

They didn’t understand why toilet training was “such an issue” and that they can NOT change the plan. They said that we were the first parents EVER to have an issue with this portion of the program. I was in disbelief. How can you not change the plan to accommodate the person the plan was designed for?! Mike and I even had to step outside and discuss our options and our next step. 

We felt pressured and overwhelmed. He reminded me why we are there and most importantly WHO we were there for. The room became hostile and people started to actually argue with each other. The room was definitely divided. They kept handing us ultimatums! Like not sending her to school would be a solution! I had to even step back and look at myself. Was I being too difficult? Was I being unreasonable? Being told repeatedly that they “can not” change the plan was becoming old very quickly. We finally reached an agreement and moved on with the rest of the plan and we agreed. 

Once it came time to sign her IEP and stating that we agreed. I asked again about the toilet training portion of her IEP because they did not change anything on the copy I was going to sign. Then we got hit with the “LEGALLY we can not change her plan”. I was so confused and did not understand. I asked them ” if we do not sign this because we do not agree with it. Ariana will not be attending school? Is that what our options are?!” And everyone just stayed quiet! 

I could not believe that they rather not let her attend school than to accommodate her IEP. We were certain that Ariana was not going to be attending school in August. Until finally the head director was brought into our meeting. She resolved the issue in 5 minutes. I’m not even joking. FIVE MINUTES. She accommodated to our requests she listened to our concerns and she solved the problem. 

A new Program for toilet training was planned and set for Ariana. One within our comfort zone and one that accommodates HER. That works for HER. 

I left that meeting feeling so torn! So happy that we definitely stood our ground and did not budge on what we thought was best for Ariana and then the other half of me felt sadness. Sad because this is the first time in a sea of meetings to come and we almost lost. This will not be the last time that we will have to sit in a meeting room with people trying to tell us what is best for our daughter and how and why not they can or can not accommodate to her needs. 

Yesterday was the first battle in many to come. Even then… I do feel joy knowing that we did not fail her yesterday. I hope we never fail her. I hope we always speak up for her. The battles will be long and hard but she will always have someone fighting for her. 

Just wave back. 

It was just the two of us on one of our errands before we had to pick up big sister from school. We made it to the store. I parked the car and got us out. I put you on the ground and we walked side by side holding hands. You love walking by yourself along my side because you’re a big girl now and that’s what big girls do. You were waving at every single person who walked passed us because that’s what you do. You greet strangers with hellos and smiles. You wave your perfect tiny little hand at them and all you expect and want is a small wave back or a little smile and it makes you happy. I can see that it makes you happy, even proud of yourself. 

We didn’t even make it inside the store when you started waving hello to strangers getting back into their cars. When along comes a man. You spot him and begin to wave at him and you say “hi”. He looks at you and you’re still waving hello and saying hi expecting a friendly face to say it back. You look up at me for approval and I smile at you and tell you how nice and “good job baby” and then I look up and smile at the man. 

But…. he doesn’t smile back. He doesn’t wave back. He doesn’t really acknowledge you. All he does is stare at you.. he stares at you while you’re smiling and waving hello to him. He still stares at you while we’re walking past him. And as we walk past each other he moves his eyes away from you and onto me. He held eye contact with me until he couldn’t anymore. Still no smile. No emotion really. Just a blank empty killer stare that left me with sadness as he walked away and never gave us second thought.

All I could think during that brief interaction was “please. Just wave back.” “Just wave.” “Say hello.” And when he didn’t, I felt my heart get crushed. I felt little, guilty, sad and angry. 

This will not be the last time something like this happens, I know it. I know my girl is different but that doesn’t make her any less. That doesn’t give you a reason to feel bad for us. To look down on her. Her differences do not make her a problem. The way she looks or speaks does not give you permission to feel like you are better than her, like you belong above her.

She’s beautiful. She’s smart. She’s funny. She’s colorful, she’s happiness and light. She’s love and all that is good in my life… 

How could you look at my baby and not smile? How could you look at her face and see anything but perfection? 

I look at Ariana’s face all the time and just can not believe how lucky and blessed and fortunate I am to have such beauty be mine. How could you not see that beauty? How could you not see how happy she has made us? How could you not see how better she has made us? 

You stare at us and feel sorry for us. You pity our life and our situation without even knowing it. I felt it in your stare. I saw it in your face. 

You don’t know how great she has made my life. And how amazing she is. You don’t understand how much love we have at home for her, And how much she means to not only her parents but her entire family. She’s the greatest blessing in my life and you didn’t even give her a chance. 

IEP meeting 

IEP meeting is done with. Definitely not what I expected. Definitely should have gone into it more prepared. Ariana was her smart-silly self like always. Super friendly and outgoing. Even surprised us on a couple of things. I knew after this meeting I would leave feeling either like super mom that’s on task and has taught her child everything she SHOULD know by now. Or like…. “I don’t know why I haven’t taught her that yet?” because I still haven’t taught her that yet….


But here I am.. somewhere in between. Half of me is feeling like super mom because Ariana totally rocked a lot of what we have been working on but I still felt like I totally forgot some very obvious lessons. Like colors. Or shapes! *sigh…*

It was actually really intimidating being in that room. You have to sit in a room and some stranger who only gets to see Ariana for an hour gets to evaluate her and what she can or can not do all within that hour. I can really see where these meetings can go completely wrong. And how things can start to get difficult.

Ariana slept about 3 hours last night. Her meeting was today at 8:00 am. I just kept thinking that whole time “please do your best. I know you’ll need a nap soon. But show them how smart you are.” If Ariana wasn’t who she is she could have been cranky and tired this morning because of the lack of sleep and rest. She would have had this evaluation that was so off on who she is and what she can and can not do. But thankfully she made it thru most of it. With only a minor set back in between. She didn’t get cranky or upset she was just so tired that she just wanted to sit still for a couple of minutes. She closed her eyes but did not sleep. But that’s all she needed after that she was up and ready to go. 

All said and done. Everyone was nice. Everything was explained thoroughly and well. Ariana did her best and everyone seemed to really love her. In a week they will call to set up a meeting to go over her results and to discuss our next step. 

Mama loves you. 

 

What a privilege it is to be this sweet girls mama. Our hearts are always so full of love and happiness because of her and who she is. She’s pure magic, she’s light, and color. I couldn’t imagine a world without her in it. 

Our lives aren’t crazy different or hard. We have obstacles just like you on your worst day and we also have victories just like you do on your best day. Ours lives are different, yes… but when did different become scary or ugly. When did different become a bad thing?

I have actually lost count on how many times I have said that Ariana is the best thing that has ever happened to my family. She is loved, so ridiculously loved. She is a force that can not be stopped and I will never let anything or anyone get in her way. 

Down syndrome is not a death sentence or a lack of knowledge, strength or determination. Down syndrome is not scary, sad or bad. Down syndrome is beautiful. It is amazing and eye opening. Down syndrome is everything that’s good in this world. Down syndrome is something to be celebrated and appreciated. Down syndrome is something to accept with open arms and an open heart not turn away from fear of the unknown. 

On WDSD we celebrate Ariana and everyone like her. Babies, children, adults born with Down syndrome makes us better. They make our world better. They open our eyes and hearts. 

How blessed we are to know someone with Down syndrome, to be able to love someone with Down syndrome. 

What a privilege to raise someone with Down syndrome!
I love you Ariana.