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.

Interview with big sister for WDSD 

Every year for WDSD and Down syndrome awareness month I interview my oldest daughter, Amari. Every year she blows me away with her answers. She fills my heart with so much love and pride. Her answers our thoughtful and true to her self. There’s so much compassion and love in her answers and voice it always brings me to tears. 

How lucky am I to have such daughters? Daughters who love each other unconditionally. Daughters who teach each other. Ariana has been a blessing in more ways than I can count… but her biggest blessing to me is helping me raise her older sister to be someone that is so filled with love and compassion. She is so understanding and nonjudgmental. It is absolutely insane to me that my 5 year old can already have such an understanding of life! I know I have Ariana to thank for that. Ariana has helped shape her sister into someone so pure and beautiful it is unbelievable to me sometimes… 


World Down syndrome Day interview with Amari💙💛

•What day is it today?

World Down syndromes day!

•What does that mean?

That means my sister has Down syndromes so we celebrate her today!

•How does that make you feel?

Happy!

•Why?

Because… because when I think of my little sister and she laughs with me that makes me feel really happy!

•What do you think about your silly socks?

It made me think of my baby sister at school!

•Did anyone ask you about your silly socks or ribbon today?

Yes! My friend asked me why I’m wearing it and I said it’s the best day ever! World Down syndrome Day!

•If there was one thing you would want everyone to know about your sister what would it be?

That I’m her best friend but I want everyone to be her best friend too.

Amari, 5 years old

World Down syndrome Day 3.21.2017

WDSD is such a great time to reflect on the last two years of our lives and appreciate further the wonderful and important impact Down syndrome has had on our family and friends. 

It’s so crazy to me that two years or so ago I didn’t even know that Down syndrome had its own day let alone its very own month! I didn’t know Down syndrome was celebrated around the world. I didn’t know Down syndrome was something to be celebrated! How sad for me to have lived in such a life where I didn’t understand or appreciate such beautiful things. 

What a beautiful and blessed day it was yesterday to be able to see all those beautiful almond shaped eyes on my phone screen and to be able to look into my own daughters eyes and tell her how much I love her and appreciate her. How blessed I am to be her mama. How unbelievably important her life is to mine. WDSD is a day to celebrate differences it’s a day to show love, compassion, understanding, and acceptance. It’s a day to make someone aware of the big world we live and love in. It’s a day to share the beauty you see on a day to day that most people don’t bother to take a second look at. 

WDSD is the day to open your heart, eyes and arms so that you can better appreciate life… all life. No matter how different or how scary it may seem.

Happy World Down syndrome Day! 

Share love, acceptance and appreciate all those who are walking beside you on this journey of life! 

Baby

For a long time it felt as if I would have a “baby” forever. Ariana was at a standstill as far as growing and physically advancing. But now, from one day to another she grew up. She’s getting “bigger”. She’s so smart and sassy. She’s full of her own thoughts, likes and dislikes. 

She has really become attached to the word NO. I might even say that’s her favorite word right now, followed closely by just wiggling her finger NO. She talks so much now. A lot of it only I can understand. But there are words in her vocabulary now. Her signing abilities have sky rocketed out of nowhere! I really wish she would let me get a video of her but she is still boycotting my cameras (I was lucky to get this shot!) 

She’s becoming so independent. I was under the impression that she would always NEED ME…. but I think.. in the long run, I’ll be the one NEEDING HER. stay my baby forever Ariana..

Expectations.

From the moment Ariana was born I was told what to expect from her. What she will be able to do and what she wouldn’t. When she would do it and how. What milestones she would reach and when. 

 From the moment Ariana was born I was told who my daughter would be and who she wouldn’t be. She wouldn’t be the baby that walked early. She wouldn’t be the baby who spoke many words. She wouldn’t be potty trained at this age and she wouldn’t be doing this at that age. 

 From the moment Ariana was born I was fed doubts, fears and expectations.

Now every single time Ariana does something new or reaches a milestone earlier than what I was told I think, “there I go again, underestimating my girl.” 

Ariana now feeds herself pretty well. She gets frustrated with me if I try to help her. I want to help because she “won’t be able to feed herself” yet. But in all actuality she is very independent in a lot of aspects in her life. 


From the moment Ariana was born I was led to believe she would never have an independent life. That she would never be independent. I know that was never anyones intentions. The nurses, doctors or therapist did not have those intentions. I am indebted to those who helped my girl when I couldn’t. It just becomes difficult when you have all this information as a new parent and everything is hitting you at 100 mph and you feel like you can’t breath, everything just becomes “she won’t do this” “she won’t do that” “this will be really hard”

I don’t want to underestimate my girl anymore. Every single day she makes me proud, because every. Single. Day she’s doing something new. Every single day she’s breaking these barriers that everyone in her life unknowingly put up.. including me. 

I will always be proud of her once she reaches a new milestone but I will no longer ever be surprised