A twinkle in the night sky.

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Tamara Wilcox -Curtis was quite simply blessed, she was delivered of a beautiful son on the 3rd of December, 2008 . He was a twin to his younger sister. She named her blessing Fuzani.

As Fuzani grew older the joy he brought was was enlightening, people often said it was as if he had been here before as he had a knowing look in his eyes coupled with a cheeky little smile.

He was always smiling.

“ Fuzani was always a happy baby”, recalls Tamara.

“ When he was 1 and half years old he started crying a lot. We did not know the reason.

He then started to get ear infections. Antibiotics didn’t work. He continued to have the infections. So at the age of 2 we got ear tubes in his ear.

The ear infections went away. Fuzani was doing fine”.

IMG_6560The relief Fuzani must have would have been immense, but then he faced another challenge, his verbal communication did not develop. This led to great frustration.

He began to have meltdowns, violent mood swings that lasted for a long time with no reason apparent to the family.

“ We then started to noticed that he wasn’t talking. His sister was talking and saying words that was aligned with her development.

We talked to his doctor about this and we were keeping an eye on this.

Then all of a sudden he would out of the blue get violent.

He would head butt you. He would throw hisself on the floor and he would hurt himself.

I was very concerned. He was doing these things and he was non verbal. I didn’t know what to do.

We continued to go to his doctor about his actions and development.”

Tamara’s motherly instinct clearly told her something was different about her little son, he had a sense of adventure that knew no bounds and recognised no danger.

More worryingly he did not outwardly react to pain either.

“ The last straw was when he chipped his 2 front teeth. He didn’t cry or anything. In fact when he would hurt himself he never cried. I just noticed he chipped his teeth.

Another thing that caused my concern was when he smashed a light bulb. He walked into my room and he had glass and blood coming from his feet. Again he wasn’t crying. He just stood there.

He was fixated on lightbulbs. So we took every lamp out our house….

Then his doctor gave us a referral to see a neurologist. At that same appointment they diagnosed him with  mild to severe autism.

They gave us a lot of information that day. The neurologist also told us that it was good that he was diagnosed early because with lots of therapy and support he could become better.

It was a sad and hectic time for my family. We enrolled him is another school which had an autism classroom with only 8 students and 3 teachers.

We started physical and occupational therapy for him.

I researched and started to learn as much as I could. We even started learning sign language as a family. As a means to help Fuzani communicate with us.

Fuzani was diagnosed with autism at the age of 2.”

Finally the family had an answer as to what made their son so unique, looking after him was a rollercoaster of emotion, challenging yet loving with a inner light that could light up a cloudy day. From Tamara’s memories of day to day caring of Fuzani she told me as follows,

“ Caring for Fuzani was very hard. However we learned to adapt to it quickly.

Numerous doctors appointments, therapist appointments, school, trying to potty train.

Even having to make him his own special meals and grocery shopping specifically for him.

He was a very picky eater. His favourite foods were chicken nuggets, cheese pizza, dry cereal, and chocolate chip cookies(homemade).

He loved water and milk. Actually water was his favourite drink. He would drink a litre a day, he started to like grilled salmon, waffles, bagels with cream cheese and grilled chicken.

Through time and struggle, Fuzani was a lot more happier. He loved to kiss and hug people.

Life however wasn’t without its challenges, sensory issues,  a mixture of frustration and shutdowns could make it hard for Fuzani, but he was a cheerful little boy who with a lust for life and a curiosity that amazed all around him.

“ I believe he was content. Fuzani loved the outdoors. He lives to play and run. He loved his wagon and his big wheel. He could stay outside for hours.

My best memories of him was the fact that he loved his brother and sister. He would always grab their hand and take them to where he was.

He would sit and watch his older brother play his video games, watch cartoons with his twin sister.

Fuzani loved Spider-Man, veggie tales, puzzles and his iPad. His favourite toys were  his sensory castle and Thomas the Train.

IMG_6559He loved to laugh and smile. His laughter and smile would  brighten up any room. He love to show love and be loved. He loved to kiss and hug.

He didn’t do well playing with other children, he always played beside them.

However he loved adults. Many adults loved him as well.

I was constantly told by other adults that you have a very special child. He is so precious.

Autism professionals will tell me that a lot of children with autism have very keen sensory issues. They don’t like to be touched, hugged or anything.”

Fuzani was truly unique and very caring remembers Tamara.

Tragically Fuzani passed away on Feb 27,2015.

Tamara now recounts Fuzani’s last days, the joy of him playing with his siblings then up to that fateful day when Fuzani passed away, leaving his family devastate with a hurt that will never leave them.

“ Fuzani  was very healthy. In fact he had just had his annual physical a month prior.

Fuzani never spent a day in the hospital except when he was born and that day. Fuzani was gone within an hour.

He, along with his brother and sister were playing in the snow the day before.

Later about 5pm he started a fever. We gave him medicine and a bath.

He did fine. Around 11pm my husband  him more medicine. He still had a low grade fever.

I went to work at 11pm. I got off at 7am

When I returned home. I asked my husband about him. He says that he was doing fine. He didn’t have a fever.

I checked his temp and it was 99.

So I gave him more medicine.

I have him another bath. I fed him oatmeal and apple juice. He ate it all and drank all of the juice.

Fuzani went downstairs and brought me a bottle of water to open for him. I opened it and he drank some and them he lay down.

I tried to make a doctors appointment but they couldn’t see him until 2pm.

So I told my husband “ Lets just take him to urgent care. I think he needs antibiotics”.

I showered. Then I lay down. I told my husband to get our other children dressed and get your self dressed because urgent care opens at 10.

He says “ Ok I’ll  just go to work after”.

He woke me up around 9:30 and told me he was going to warm up the car.

“ Go ahead and get Fuzani dressed. Everyone is ready. “

I got up got myself together.

Then I went to get Fuzani up.

I turned him over and he took his last breath.

I instantly ran downstairs and told my husband to call 911 and tell them CPR is in process and it’s a 6 year old boy.

I started performing CPR on my precious son. My husband was on the phone with 911 and they were giving me a lot of support and instructions.

I work in the medical field. I had just re certified my CPR and first aid 2 weeks prior.

Then the paramedics arrived. It seemed like it only took 5 minutes. Then other EMTs arrived along with police officers.

Long story short. They transported him to the hospital. He passed away within 1 hour. He didn’t make it to ICU

My husband and I held him until the end. While his grandmother and grandfather were present.

We are still waiting on the autopsy report. Even to this day 6 months later…..

I can add a lot more.

That day when he passed.

Fuzani  didn’t have a fever throughout the night.

Actually my husband checked his temp 1 hour prior to me coming home and throughout the night.

He had a low grade fever when I got home. It was 99.

His twin sister sat next to him with her iPad and played videos that he loved. She kissed him a lot.”

I can’t begin to imagine the pain.

Tamara has since raised awareness and promotes acceptance in the autistic community in Fuzani’s memory, she has a substantial Facebook support group and a heart warming tradition of Fuzani Friday. Each Friday a tribute post and a photo of her precious son appears in my newsfeed. I cherish it as many others I know do.

To Fuzani, P. I .P.

Play In Peace, a twinkle in the night sky.

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Comments

  1. Jules Curtis Akers  September 7, 2015

    PIP 🙂 Keeping the wee man’s memory alive. Tamara will always miss this beautiful little fellah but hopefully no regrets because she loved and cherished him while she could.

    reply
  2. karen  September 27, 2015

    I cannot imagine. One of my autistic sons just turned 7. Sounds exactly like yours. He is higher functioning and has a lot of communication but his interests…playing beside friends…loving warming smile. He brings happiness to me like nothing i imagined. I have 4 children but am closest to him. I just cannot fathom what you experienced. I cried reading it after nearly visualizing being beside you in those last moments. Everyday i fear for my sons with Autism. It controls so much of my life. I take anxiety meds because of my fear of losing them to wandering or some sickness they cant describe…no sense of danger. I want you to know that your son and family will be added to my nightly prayers. God bless you all. I do not need a reminder that i would take all the trouble and chaos if it means my kids are with me but I do need reminders every now and then to not be shy about how truly special they are and the impact they have on family that cares for them.

    reply

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