‘She will probably never walk, but hey, these types of kids are always happy.’ Happy? I grieved for the daughter I thought I was going to bring home.’

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“On August 25, 2011 we were blessed with the birth of our daughter Ari. I have never been so scared and excited at the same time. Ari made her surprise appearance at only 27 weeks weighing only 2 lbs. I waited to hear her cry but there were no sounds as she was rushed to NICU. The doctor looked at me and said ‘she is very small and they are working on her’. An emotional nightmare was just starting.

Courtesy of Stacey Castleman

Finally the next day I was able to go to NICU. As I looked in the isolet I noticed she was the size of my hand yet so perfect! Immediately I was surrounded by medical staff ready to run down a list of medical concerns I was not ready to hear.  The doctor started by saying your daughter was very early and that could lead to complications. I was crying trying to get out the words ‘is she going to die?’ She could not answer that question but followed with ‘she also has a hole in her heart, needs help with breathing, is not receiving foods as she is too small, oh and by the way, yesterday we thought she had down syndrome but we don’t see it today.’ Wait, WHAT?  Down Syndrome? But I prayed everyday during my pregnancy that wouldn’t happen! For the 1st month of her stay in NICU every other day we heard we think she has Down syndrome to the next day stating we don’t think she does. She was too small to get enough blood for the test.  This was the time I became very critical of my daughter. I looked over every inch of her looking for the markers that would conclude a Down Syndrome diagnosis. Even comparing her to pictures of other Down Syndrome children. They had to be wrong thinking she had Down Syndrome .

We finally received the test results. The doctor told me he was sorry but Ari did have Down syndrome. I could feel my legs fall right under out of me. He helped me up and said I needed to prepare myself ‘because with her being a micro premie and having Down Syndrome she will probably never walk or have communications skills but hey, these types of kids are always happy.’ Happy? I grieved for the daughter I thought I was going to bring home.

How was I going to be able to take care of my daughter?  I wasn’t ‘special’, I had no idea what to do! So like most moms I researched and prayed. I prayed I would become the best mom Ari deserved. I quickly found out how uneducated people were when it came to DS. I was uneducated! My 1st experience was a night when Ari was having difficulty breathing and our regular doctor was out of town. I took her to the walk-in clinic. When the doctor came into the room she asked what brought us to the clinic. After my explanation she stood there looking at Ari and said ‘well its down syndrome’. She never even touched my daughter. The next day after seeing her regular doctor Ari was admitted for RSV. It was at this time I realized my daughter was put in a box. A box of old school thinking and treatment.

Fast forward to 2016. At this time Ari was 5 years old. We spend most of our time at doctor appointments, three different therapies, and home school. She is walking, kind of running, talking but not clear communication. She was put on growth hormones and struggles to gain weight. She is the biggest joy in our lives. Our original nightmare has become one of the most beautiful things we could ever dream. Everyday Ari and I think outside of that box to reach her full potential. Ari learns through play as every child at this age should. She is slightly behind her peers. We work with neurodevelopment, something no doctor has ever suggested and it has helped in some areas of her development. But I couldn’t help to think there was more I could do. I was concerned about her speech, her ability focus, stimming, and possibly falling more behind. And during a night of researching CBD (cannabidiol) came up. Knowing nothing in this area it soon consumed my world. I spent the next 3 years researching. I need to make sure it was the best thing for her.

Here we are in 2019. Ari has been on CBD for one year. Why did I wait so long?! The main reason I started her on the CBD is because it’s not IF she will be faced by early on set of dementia or Alzheimer’s, it’s when. I have many friends with older children with DS that are going through this right now. I do not want that for my daughter! If there is anything I could do for her that could slow the process, sign me up!  I never expected to see the growth in her development we see. CBD oil has done that for us.

Courtesy of Stacey Castleman

Her speech was the 1st change I saw. Her speech before consisted of 1-2 word sentences with a lot of babbling words we couldn’t decipher. I could never really have a conversation with her I could understand. Now she is putting 6-8 word sentences together! We have dialog. Tears fill my eyes when out of the blue I hear ‘I love you mommy so much’. This definitely has taken the frustration meltdowns out of the picture.

Therapies have turned into new evaluations each time. She continues to meet their goals faster than they can set them. With her increased focus she can process directions better. She is able to follow and understand what they ask of her. We are still building her strength in her hands and core but her balance is noticeably increased. She is running with proper form and two-foot jumping. Two-foot jumps and running as a huge deal but it is a key milestone for the brain. HUGE in our world.

Courtesy of Stacey Castleman

Another area in her life that doesn’t exist any longer is stimming. Before Ari, I had never heard of stimming. When Ari would stim she looked like a crazy chicken flapping her wings. This was a way for her to calm her self by blocking less predictable environmental stimuli. One night I was sitting next to her I noticed it had been awhile since I had seen the flapping chicken. No way did CBD help with this!  A few weeks later I was out of CBD and this became an eye opener for me. For the week she was not taking CBD Ari again had difficultly in many areas of her life.  She began mumbling more words, stimming, less focus, and just out of sorts. Needless to say we will never run out of CBD again.

Courtesy of Stacey Castleman

Please do all your research and talk to doctors and therapists as CBD is not yet well researched for children. All I can say is it made a world of difference for us and seems to be the wave of the future! My goal was never to change my daughter, because she is the best teacher, inspiration, and blessing in my life.  For all she gives to me, I will continue to help her reach her full potential.  Proving all those in the box thinkers wrong! My goal is to help other families in helping their children reach their full potential.”

Courtesy of Stacey Castleman
Courtesy of Stacey Castleman

This story was submitted to Love What Matters by Stacey Castleman.  You can follow on Instagram hereDo you have a similar experience? We’d like to hear your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.

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Read more beautiful stories about children with Down Syndrome here:

‘She said they become ‘the pet of the school.’ The life I imagined crashed before me and fell to pieces. I heard the words, ‘She has characteristics of Down syndrome.’

‘What if I’m embarrassed of my own child?’ I received the call from the doctor. He was ‘so sorry,’ and we were ‘welcomed to counseling to talk about what we wanted to do.’

‘I basically had twin girls with Down syndrome, one of whom had only been home a month, and now I was having twins! My whole world stopped. I looked at my husband in shock.

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