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

Fine motor skillzzz

 Today Ariana opened a bottle of apple juice and spilled it ALL on the carpet. What’s the first thing I did? I gave her a big kiss, followed with a high five! I even gave her a sweet fist bump. 

Something like opening a bottle, turning a door knob, or even using her spoon or fork when eating are huge accomplishments. Her fine motor skills are something that her therapist work on with her. I didn’t prompt her to open the bottle, it’s just something she decided to do on her own. She saw apple juice, she wanted it, she went for it, and she got it!

Whenever she sits down I make sure I give her a fork for her dinner. When I see her trying her hardest to reach for the door knob I give her those extra inches to reach and help her turn it. Now when she’s sitting down I’ll make sure I hand her a bottle so she can practice opening it and drink out of it.

It’s all about practice and being repetitive with Ariana. Practice makes perfect. 

What we consider accomplishments and milestones, you consider every day normals. Using your utensils, drinking from a straw, dressing and undressing yourself  etc. are tasks we have dedicated specific time towards to accomplish and master.  

I’m so happy Ariana spilled her apple juice today. Most importantly, I’m so happy Ariana taught me how to love life and really enjoy and appreciate everything it has to offer. Believe me when I tell you, spilled anything has never made me this happy.

No more G-tube

When Ariana was born and she had her 2 month stay in the NICU because of her “feeding” issues I never imagined the long, complicated experience to follow over her G-tube removal. 

The day Ariana was born she was handed to me a couple hours after birth. I held her maybe 5 minutes. In those 5 minutes she refused the bottle and the breast so she was taken to the NICU. 

Fast forward to July 2014, Ariana is still in the NICU. We are beginning to lose hope, we just wanted our baby home. I didn’t feel like she needed to be there, she would eat she just wouldn’t eat the amount the doctors felt she needed to eat to be a “healthy baby”. Honestly if she didn’t have Down syndrome she wouldn’t have been taken to the NICU so soon. The doctors completely jumped to conclusions, “She has a feeding issue, it’s very common with downs.” 

I remember sitting across the team of doctors that was assembled to analyze Ariana’s feeding problems and assess the situation. I remember them telling me “this is your only option” “do you want your daughter home?” 

Pressured and bullied we agreed. 

July 26 2014, Ariana finally came home.

I would be lying if I told you all that we didn’t use the G-tube, We used it the first week. I followed the crazy feeding schedule that they gave me. I fed her every 2 hours, I wrote down every ounce she drank and ever time she drank that ounce. But after that week I had enough, Ariana had enough. I sat down on the couch with her, I looked at her and said “baby.. we’re gonna eat with our mouth now, okay?” I felt positive about my decision.

Ariana breastfed for 17 months, she started eating solids at 12 months, she started drinking from a cup at 9 months and mastered the straw at 10! 

Ariana hasn’t used her gtube for 2 years! And still her Gastroenterologist refused to remove it. We waited for her ASD/VSD to heal, and it did! Then we waited for her to gain weight, and she did! But yet, her doctor refused to remove it. 

August 31st 2016 Ariana visited her NEW Gastroenterologist. 5 minutes into her visit and her doctor said “Let’s get that G-tube out!” Yes please!

I cried when the doctor agreed with me. I just became so overwhelmed with emotion that I just started crying. 

It came out and Ariana just looked up at me and smiled… I know she is just as relieved as I was to finally have it out. Nothing is holding her back anymore. 

Naughty

Someone woke up extra silly, and extra sassy. Ariana had two OT’s and a PT visit today for an evaluation and she was not having it. She was being kind of a mean little bug. I even heard a couple growls. She refused to say please or thank you. And when asked if she wanted more instead of signing or nodding her head yes she would just grab hands and pinch her therapists.

She even threw herself on the floor at one point and came to me and pointed at one of the therapist! I don’t know how to feel about today’s therapy? Kind of sad, a little embarrassed even? She was such a naughty girl today! 

Once it was all said and done her therapist were impressed with her and her attitude. They said she is such a “typical” toddler. Wants to do what she wants to do, when she wants to do it. 

She will be seeing her OT’s every 6 weeks now instead of 4, they said she doesn’t need to be seen so often. I think Ariana  is just too much to handle! Haha