There are many things I would like to share about my incredible, beautiful, unique son. He has been such a gift and a teacher to all who have encountered him. He has faced seemingly insurmountable physical hardships with grace, dignity and appreciation.
(Please see my “about” page for a little history on Jaidon.)
We are in the midst of  loving him as he let’s go of this physical life. He will flee his crooked body soon and he will transform into something far too magnificent for me to comprehend. I have been sharing our journey on my FaceBook page and I feel very strongly that many can be touched by my son’s graceful path.

Here are a few of my recent posts.

Saturday March 19

‎. . . Our sadness, stress, wants or personal needs regarding Jaidon are secondary. His needs and continued comfort come before all else. He has given us so much. He deserves for me to stay strong and sane so that I can speak and act on his behalf to the best of my ability. Friends, your kind support is so appreciated. You are adding to my strength.
LOVE!

Sunday March 20

The only thing to do is focus on every NOW moment. Right NOW I can be grateful for the gift that Jaidon has been for 16 years. Right NOW I can tell him I love him. And right NOW I can make a promise to myself, my family and my friends, that I will stay positive and pursue my highest potential even in the most difficult moments. Right NOW I feel I can do this to honor my son and all that he has taught me.

Monday March 21
It is time.
Jaidon is clear of all tubes.
I have begun his first small doses of morphine.
He is beautiful

Tuesday March 22

The little bugger is still here. He is a very determined kid. His dad was able to make it here in time from San Diego. Jaidon was waiting for his daddy and is obviously thrilled to be with him. He is surrounded by love and very interested in all that is happening. He did not like the morphine and we ceased it after the 2nd dose. He is comfortable, alert and happy. He is teaching us still.

Wednesday March 23

Jaidon teaches us more each moment.
He’s had a surge of energy and is so enjoying his time it has further altered my perspective of his death. He has granted us time to process our reality. He’s smiling, lifting his limbs & doing things we haven’t seen in years. His way of thanking us for letting him go. We are so fortunate to have cared for this amazing soul.    2 seconds or 20 days . . . he has left us smiling.
Question from a friend ~ “How are your 3 younger children holding up?

Answer from Annetta ~ Thank you for asking. The 3 are doing well. Jacob and Cali are affected more than the little guy. They have sad, crying moments but overall our days are very calm, happy and as close to usual as always. (Which, for our family, is not very usual). Bedtime is the most emotional because the children are sad that brother may not be with us in the morning. They say goodnight, tell him they love him and goodbye from this body, just in case. They understand that he will be with us always and when we see something truly beautiful, magnificent or unexplainably sparkly, that’s brother. He will soar beside us everywhere we go and he will celebrate his mobility and transformation.

Thursday March 24

Jaidon is STILL here and boogying. His dad is expecting him to audition for River Dance soon and I think he may take up jumping rope. He doesn’t seem to remember he is paraplegic. He is continuously smiling and lifting limbs that haven’t moved for years. It’s his daddy’s birthday today and Jaidon is ready to party! What an amazing life and a wondrous exit!  That’s our boy!

Friday March 25

He’s still here! Still smiling. He feels pride that he is in charge. He is making his own decisions. Slowing down a bit now with his activity. Hospice explained that some people experience what is called, “awakening”, for brief amounts of time. Jaidon has had this for 5 days. He slept a little last night for the first time since Monday.

There is something I feel very strongly that Jaidon would like you all to know. It occurred to me as his Daddy, Noah and I were pushing him down the street for a wheelchair ride moments ago. I looked at him, so content, just loving every moment and he said to me in thought, “Mom, I’m not dying this week. I’m LIVING! Please tell everyone, this is the best week of my earthly life.”

Saturday March 26

My son silently fights. I accept our circumstances. There is no alternative. I will celebrate his freedom. It is this unusually long departure that finally got to me this evening. We must continue our journey and I will compose myself and move forward with strength and confidence. Thank you so much, every one of you who have kept us in your thoughts and sent messages.

Sunday March 27

Fly away. Fly away. Fly away and back again.
Fly above me, beside me, under me when I need a lift.
I will see your glory in the sparkling sea. I will feel your breath in the soft breeze. I will forever carry with me the strength you gave me.
You came to teach me. I learned.
Fly away.

For J-Boy Love Mom

Tuesday March 29

Jaidon Alvarez Fetters
10/2/94 ~ 3/29/2011

He was perfect.

Mom and Jaidon shortly before his final journey.

Jaidon at age 2

Jaidon’s Journey ~ A Bit Of History

Writing to you all has been a great help to me. Most of my day is spent in the room with Jaidon and Joel, (who literally has not left his son’s side since arriving a week ago.) Of course Granny is present but she has been able to go out daily and keep busy with errands. It is her way of handling this event and I am proud of her for coming to terms with it all. She has spent the past 2 years caring for Jaidon 24 hours a day. Noah keeps the other kids busy with activities and is a voice of reason when Joel or I experience temporary, mini-breakdowns.

He also spends hours in the room holding Jaidons little feet and keeping us company. Jaidon’s demeanor has remained unchanged. Absolutely peaceful, a knowing smirk on his face, and more movement than we’ve seen in years. He moves slow and purposeful, lifting his legs, looking at them with interest and pride, and gently placing them back down again.

Jaidon was diagnosed with Metachromatic Leukodystrophy & Mosaic Ringed Chromosome 22 when he was almost 2. He remains the ONLY documented case with this combo in medical history in the world. His life expectancy was 3 years old.

At certain ages he accomplished a variety of skills. He could walk and speak when he was younger. He could read quite a few words from cards I made for him to point to. He drove a battery operated mini jeep  like a mad-man, played on a special little league team and loved to vacuum.

In his entire life time he never once demonstrated negativity, anger or fear. He never did anything other than love.

For the past few months Jaidon wanted to eat less and less.

I noticed subtle changes in him and enlisted Hospice.

About 4 weeks ago he became congested. We thought it was a cold.

He ate less. He closed his mouth and gritted his teeth.

We kept feeding him and giving him lots of coconut water.

We went to his doctor repeatedly. About 2 weeks ago it was determined that food and fluid was being aspirated into his lungs. His congestion was so bad he could no longer get enough air.

I was given 2 terrible choices.

1. Feed him and watch him suffocate

2. Stop feeding him and watch him starve.

We chose to attempt a temporary nasal feeding tube.

The nasal tube should have taken about 30 seconds to insert.

4 hours later I left the hospital with a very uncomfortable Jaidon and 5 disturbing x-rays seared in my mind.

Because Jaidon’s spine is now shaped like the letter “C” his organs have all been pushed into an intertwined ball. His stomach is located in his ribcage between his lungs and is turned at a 90 degree angle, making it impossible for the tube to enter. The doctor placed the tube and hoped the nutrition would somehow find its way into the opening of the stomach. We also set up appointments with 3 specialists to see if a stomach tube procedure could be performed.  At our first appointment the specialist examined the X-rays and had to pass. He called the plan B specialist for us. Who also thought his procedure would not work but was willing to see us and would then pass us on to the more invasive plan C specialist.

Meanwhile, Jaidon’s congestion was worsening.

We went back to our beloved pediatrician 2 days after the nasal feeder insert with deep concerns.

The doctor told us Jaidon had pneumonia. I knew what that meant. It was over. NO procedures could be performed. Granny and I left the office grief stricken.

Joel got on a plane. We decided together to end the discomfort of the tube that was simply filling Jaidon’s lungs with more fluid. I pulled the tube.

Jaidon was very relieved. He was immediately more comfortable. He was also drowning. I did not think Joel’s plane would get here in time for him to hold Jaidon before his death.

Jaidon could not get air. He was gasping and looked like a fish out of water. His chest was gurgling so loud you could here it throughout the house.

Joel did make it. Jaidon’s chest cleared. Jaidon began doing crazy things we haven’t seen in years or ever.  He is thrilled to have everyone around him, loving him. He is loving us back.

Jaidon can never eat or drink again. This is an excruciating thing to witness but Jaidon does not seem to be affected at all.

Jaidon is only love.