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

I love..

I love the way you look at me. I love the way you rest your forehead on mine. I love the way you whisper to me. I love the way you say I love you when I say it to you. I love the way you place your little hand on my face. I love the way you look for me in your sleep. I love the way you rest on top of me when you’re tired. I love the way you’re silly, and sassy with me. I love the way you ask me to put on baby signing time. And I love the that you get so excited once it starts. I love the way you purposely poke my eye and then giggle because it’s so hilarious. I love the way your arms reach out to me when you get a ouchie. I love the way you let me brush your hair. And I love the way your hair kind of curls at the ends. I love the way you smile at me when I smile at you. I love the way you laugh and play. And I love the way you cry. I love the way you let me know you’re sad. I love the way you let me know you’re happy. I love the way you fight with your sister and the way you console her when she cries. I love the way you love her. I love the way you pout your lips when you’re tired or sad. I love the way you point at things with your little finger. I love the way you hide in my cabinets. I love the way you yell at me to scare me. And I love that you love scaring me. I love that I can pretend cry and you come to make me feel better. I love the way you look in your footsie pajamas. And I love the way you put your dolls to sleep. I love the way you pat thier backs and rock them. I love the way you get on your sisters bike and then get angry about not reaching the peddles. I love the way you growl when you play. And I love how you can make anyone smile. I love the way you walk, dance, and “talk”. I love the way you run to me when you miss me. And I love the way you say Dada with arms reaching out as you run to daddy when he gets finally gets home. I love the way you eat a lollipop and I love the way you get all sticky. I love the way you smile with relief after taking your shoes off. I love the way you cry for spicy chips and then cry because they were too spicy. I love that you’re tough and I love that you’re sensitive and soft. I love the way you’ve changed me.. and I love the way you’ve changed my world. I love the new life you gave us and the amazing journey you’ve sent us on. I love you. I love you so much. I love everything about you. Everything. 

​”She will never play any sports…” was once a thought I had. Silly how we can take simple things for granted like being able to play a sport or join a league. Silly me to try and underestimate my girl.

Today Ariana had her first little soccer “practice”. It’s more of a mommy and me type class where they learn the fundamentals of sharing, participating, and soccer. But she’s getting out there! She’s kicking the ball, following the kids and being apart of a team. She’s an important piece of the picture. She belongs to something. 

Ariana reminded me today that I need to pull out that box I put away when she was born more often. The box that I filled with soccer dreams, ballerina recital hopes, and karate kicks that just seemed so far away from now. Today Ariana reminded me that I need to stop underestimating her, that I need to stop doubting her. 

Seeing her out on that field kicking the ball, and walking amongst all the kids… my heart cried out. My mind was running on a million thoughts. My soul was happy, my heart was warm and full. I’ve never felt happiness like that before. 

Everything I thought she could never do, she will. Every time I have ever doubted her she has proven to be stronger. Every single time I fear for her she comes out on top. She is strong. She is capable. She is able. She is everything I thought she wouldn’t be…… 

Life is good guys. Life is really good.