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. 

‚Äč”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. 

When Ariana was born I was handed a pamphlet and on that pamphlet in big bold black letters I read “Down syndrome life expectancy”. My little girl was about 3 days old and I was already being told how long she would live, what kind of life she would have, and what she would be able to and not be able to accomplish. 

Not very long ago in 1983 a person with Down syndrome life expectancy was only 25! Now that life expectancy is 60. 

I found a life expectancy calculator online, based on your age and gender it gives you an idea of how long you’re expected to live. Of course this is just a loose number. Health, life style, and family history plays a big part in that number.

Life expectancy calculator https://www.ssa.gov/OACT/population/longevity.html

Based on my age and gender I am expected to live up to 86 years old. America’s average age for a woman in the US is 81 years old. 

So say I live to my 81st birthday, Ariana and I will be reaching the end of our lives together. Of course I would go before her, but two short years later we would be reunited. Say I live to 86, statistically speaking I will have to say goodbye to my baby in this life before I depart. 

My biggest and most selfish fear is dying before Ariana does. I have contemplated sharing this fear with the world. No one talks about. I don’t know why no one talks about it. I don’t want to leave the well being of my daughter to anyone but me. I don’t want to have to ask my oldest to take over for mom. I don’t want my baby in a home. I don’t want her to ever be without me. I don’t want to have someone explain to her why mommy isn’t here anymore. Would she understand? Would she still wait for me? Will she expect to see me walk in her door? Would she understand why mommy doesn’t spend time with her anymore…..

So I pray… I pray that I get my 86 years that aren’t promised to me. I pray that my girl gets her 60+ years. But I also pray that I don’t go before her. That was as hard to write as it was to say… I don’t ever want her to have to experience losing a parent or a sister. I don’t want that pain for her. I don’t want that loneliness for her. 

And maybe I’m not giving her enough credit… maybe she will be okay! And maybe she will understand. 

But that’s where I stand right now, soaking deep in my selfish fears.

And that’s the raw truth.

Happy Birthday Raising Ariana!

 Today my blog turns 2! I am so greatful for my safe place. It helped me thru some difficult times and some really great ones. I shared my grief, I shared my pains, my fears, Ariana’s milestones, set backs, and goals. 2 years of Down syndrome day thoughts, and 2 Down syndrome awareness months posts. 3 best buddies and buddy walks posts with plenty of pictures of how absolutely amazing our walks were. 

Raising Ariana has been such a life saver, sanity saver, and total game changer for me. 
Over 6,100+ views and visits, Raising Ariana is something I am very proud of. A place that I created for the sole purpose for me to let out what was on my mind has turned into somewhere I hope new parents can come and find the peace and reassurance I was so desperately looking for when Ariana was born. I hope I’m that place, I really want to be that place. 

I write this post while Ariana sits on my lap, “talking” to me with two tiny fingers up my nose feeling the luckiest mommy on this planet, in this galaxy. 

Thanks for reading guys!

With so much love and gratitude,

New Mommy,

Believe me when I tell you everything will be okay. Your baby will be so much more than that diagnoses you just received. Your baby will be happy, and silly. Your baby will be loved and will love you back so deeply that it makes the oceans envious.

Don’t box up your dreams and goals for your baby, your baby will accomplish so much. Don’t fall for the stereotypes and the misconceptions surrounding Down syndrome. Your baby will flourish, your baby will conquer.

Your baby is enough. You are enough, your love is enough but grieving is okay. You must grieve the life you thought you would have with your baby and prepare yourself for the most extraordinary journey. A journey you weren’t expecting, but will soon turn into the best parts of your life.

Don’t question yourself, or your abilities. Don’t blame yourself, or your grieving. Do not lose yourself in the what if’s.

Your baby is your baby. Love your baby, be present with your baby. Enjoy, parade, and enlighten with your baby.

The world is big, and it just got bigger.

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The 4th

Ariana’s first holiday was the 4th of July, and it was spent away from home. Part of me knows I should be great full that that was the only holiday she missed, but part of me wants to be sad and angry about it. I wish she had been home, and I wish she had been with us. 

I remember asking her nurses if i could dress her myself. I remember being so scared to move her, or pull out her feeding tube that it took me about 20 minutes to put on a onesie and bow.

I remember holding her and just starring into her big, brown eyes wishing, hoping, and praying that we could take her with us once it was time to go. I remember feeling so helpless and hopeless. Helpless because no matter how badly I wanted, I couldn’t take my own baby with me. Hopeless because it felt like an end to her NICU stay was nowhere in sight.

I always remember how this holiday was spent two years ago. I always remember how I felt. How we all felt when we left for the day.

Helpless, hopeless, and heart broken. We wanted to be a family so bad. We wanted to be whole. Every day until she came home was hard. But that holiday was the hardest. Our empty arms yearned for her warmth and our hearts called out to her with no answer… what a day. What a month that was.

So today, and every 4th I will remember. I will remember how I felt in 2014. I remind myself how lucky I am to have her with me now. How blessed I am to have warm arms from her hugs, how all we have now is hope. How our hearts burst with love and happiness, and how our holidays are now full.

The little things in life are sometimes big.

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2

It’s been awhile since my last post and a lot has been happening with Ariana. For one, she started walking! Like full on walking. It’s incredible to watch her accomplish this goal. One day she just woke up and started taking her first steps. It’s was something magical, amazing, it was beautiful. She was so proud of herself, we were so proud! Now I can’t keep her still for more than 2 minutes, and I love it!

Walking. Oh’ how we take things for granted until we realize how difficult “simple everyday” tasks can be and are for others.

Ariana also just started saying mama… and I cried, like a baby when I first heard her sweet little voice call out to me while she stretched her arms out for me, for comfort. I couldn’t believe it. I waited 2 years to hear my baby call me (crying as I type this) 2 beautiful years of speech therapies, speech exercises, frustrations, and hopes of one day to hear her say mama. She digs herself into my arms and melts into my lap. She makes me feel like she knows she’s safe there with me. My sweet Ariana, you know I’d rock this world with an iron fist if it meant protecting you.

Life has been so blessed with you in it Ariana.

Two amazing years and it only took Ariana two seconds to change my life. The troubles I once thought of as troubles aren’t. My burdens aren’t burdens anymore. My struggles don’t seem as struggles anymore.

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