My handsome little soldier, my hero, and now my forever angel;
You are everything I never knew I always wanted.
Our life was not what we had hoped or what others expected,
Instead it was more than we could have ever dreamed of;
There were so many things that weren't accomplished or seen in others eyes, but in my eyes...you did so much more.
My little man:
You may not have learned to crawl, walk, or run;
but I got to see your physical strength in so many other ways...
The strength to get through each and every seizure multiple times a day,
The determination to survive acute liver failure,
And the fight to get through the many types of surgeries and treatments tried throughout the years.
You may not have learned to read, write, or even speak normally;
But you did communicate in your own way...
The smiles that existed from listening to stories, the giggles from watching mommy being silly, and the noises when you were wanting to say something...
These were all quiet ways you communicated to me.
I may not have had the opportunity to see you grow into a man, or to see you travel the world or even start a family;
But the experiences I have gotten to see with you will be with me forever...
The joy of waking up to you every day,
The warmth of daily snuggles,
The happiness I saw in your eyes;
The calmness that came with visits to the coast...
And the fact that we were family, just the two of us...
And for me, that was enough.
However, I will be honest...
There is a part of me that wanted so much more for you,
So much more of a simpler and pain free life,..
The ability to discover so much of life and see the world...
For me to be able to spoil you in so many more ways..
Though these hopes and dreams will never come true;
And I am heart broken in every sense of the word...
I do not regret a single moment that I was blessed to be with you.
You spoiled me in so many ways, blessed me beyond words..
And made my life richer Than I could have ever wished for...
You are my hero;
You have taught me how to fight life's toughest battles,
You have taught me how to sacrifice my own wants for the needs of others,
And most of all...you have taught me that Life is worth fighting for;
That every day should be cherished,
And life is what we make of it....
My little son, you have now transformed into an angel;
You have left this life here on earth and are now living in the heavens...
A place I know where blessings are abundant, where people are whole, and where love is the only thing in people's hearts....
You are with our creator and I know that you will be well taken care of....until we meet again.
You will be forever cherished....and...
I will miss you more than words can explain..
You were the light of my world and I know you will be a sparkling light to those above..
May you know that while I may not be able to be with you right now,
My love for you will live forever...
Rest in peace... My handsome little angel.
Letter Shared by Chelsea Rook
https://m.youtube.com/watch?v=Vk_ALW8l4Yc&feature=youtu.be
.........
Almost 12 years ago, I remember Chelsea telling me that she was going to have a baby. It was an exciting time. This precious baby who was always moving about in the womb was going to be born. On Friday, June 1st, 2007, Ezekiel Corbin Jennings was born. It was amazing! This wonderful, special baby was born with the fullest head of hair that I have ever seen. It was, of course, quickly formed into the cutest baby Mohawk of all time.
Around six weeks old, Ezekiel started having seizures. I remember having breakfast with Chelsea and Ezekiel soon after that and Chelsea telling me, “Heather, Ezekiel is having seizures and the doctors don't know why.” Ezekiel and his mom soon moved to Portland and got connected with OHSU and Doernbechers and his wonderful pediatrician, neurologists, geneticists, dietician, nurses, and other staff members to figure out the answer to the question “why”. There were hospital stays, there were blood tests, there were devastating moments when everybody thought that Ezekiel was going to pass away when he was almost three years old because his liver was failing. There was great joy when his liver started healing and he left the hospital 11 days later. There was a surgery so he could be fed safely. There was a VNS surgery to try to help with the seizures. There was the diagnosis of Hypertonia, where his muscles are not able to hold him correctly. There was the diagnosis of Cortical Visual Impairment where he can just see shapes and bright colors. There was the diagnosis of Cortical Auditory Dysfunction, where his brain didn't process all of what Ezekiel heard. There was the diagnosis of Intractable Epilepsy, Dysphasia, Severe Developmental Delays, Swallowing Issues, and GERD. There was the diagnosis of the mitochondrial genetic disorder of Chromosome 22q11.23 deletion. There was the final diagnosis of Degenerative metabolic brain disorder, which all caused Ezekiel to pass away on July 19, 2018. He was 11 years, 19 and ½ days old.
If I stopped the narrative here we would know the why of Ezekiel's seizures, and we would know what they did to his body. So, let me remind you who Ezekiel was.
Ezekiel was a little boy who as a baby had the chunkiest cheeks! His hair was just wild and would stick out every which way. When I would visit Chelsea and Ezekiel, I never knew what kind of hair I would see. Would it be the crazy spikey hair that stuck out everywhere or would it be smoothed back into the models' swoop that made him look so handsome and typically get him kisses from the girls at school.
Ezekiel had a cheery disposition. He had such great belly laugh and a smile that would just light up his entire face. Ezekiel would laugh so hard that he couldn't catch his breath. His laughter was contagious. There was a time at school where he was playing with a bead curtain next to another little boy and just started laughing which caused the other boy to start laughing with him which in turn caused Ezekiel to start laughing harder.
Ezekiel loved his switch toys at school. He got to choose when they turned on and when they turned off. As with everybody, he loved to have a choice and was determined to make that choice known. Woe to the person who misunderstood what he was communicating to them. There was a time in school where Ezekiel was given a choice on which two games he wanted to play. Ezekiel chose game A. The teacher's aid started game B and then quickly learned that she started the wrong game and Ezekiel was not going to put up with that!
There was another time when I was visiting with them and Chelsea was kissing him on his cheek and calling him, “My baby. And My handsome little man.” When she turned around to go grab something, he did the embarrassed eye roll that every little boy gives when his mother is kissing him in public.
Ezekiel loved having stories read to him while cuddling his mommy. He loved cuddling in general and was so good at just folding himself into you and just resting against you...
He loved music and when his mom would dance on the coffee table or on his mattress where he could feel the beat of the music. He loved movies and bright colors. He loved going to the beach with Mommy and feel the breeze on his face and hear the soothing sounds of the waves crashing onto the shore.
Ezekiel loved life. Yeah, his brain and his body did things to him that were not fun and were scary, but he loved life. He fought and was determined and laughed and loved and lived his best life. And we who had the privilege to know this sweet boy can learn from him that in spite of the trials and pain of this life, we can fight and love and laugh and live our lives the best we can.
I don't know about the rest of you, but it has been such an honor and blessing to be even a small part of Ezekiel's life. He was an amazing person who had such an awe inspiring strength and determination and joy. He will be greatly missed, but never, ever forgotten.
Almost 12 years ago, Chelsea told me she was having a baby. It was an exciting time in the months to come with this precious baby always moving about in the womb, letting Chelsea know he was excited to be born. On Friday, June 1st, 2007, Ezekiel Corbin Jennings greeted the world. It was amazing! This wonderful, special baby was born with the fullest head of hair that I have ever seen. It was, of course, quickly formed into the cutest baby Mohawk of all time.
Around six weeks old, Ezekiel started having seizures. I remember having breakfast with Chelsea and Ezekiel soon after that and Chelsea telling me, “Heather, Ezekiel is having seizures and the doctors don't know why.” Ezekiel and his mom soon moved to Portland and were connected with OHSU and Doernbechers and his wonderful pediatrician, neurologists, geneticists, dietician, nurses, and other staff members to figure out the answer to the question “why?”
There were hospital stays, there were blood tests, there were devastating moments when everybody thought Ezekiel was going to pass away when he was almost three years old because his liver was failing. There was great joy when his liver instead started healing and he left the hospital 11 days later. There was a surgery so he could be fed safely. There was a VNS surgery to try to help with the seizures. There was the diagnosis of Hypertonia, where his muscleswere unable to hold him correctly. There was the diagnosis of Cortical Visual Impairment where he could just see shapes and bright colors, like the ones we are wearing today. There was the diagnosis of Cortical Auditory Dysfunction, where Ezekiel’s brain didn't process all of what he heard. There was the diagnosis of Intractable Epilepsy, Dysphasia, Severe Developmental Delays, Swallowing Issues, and GERD. There was the diagnosis of the mitochondrial genetic disorder of Chromosome 22q11.23 deletion. There was the final diagnosis of Degenerative metabolic brain disorder, which all caused Ezekiel to pass away on July 19, 2018. He was 11 years, 19 and ½ days old.
If I stopped the narrative here we would know the why of Ezekiel's seizures, and we would know what they did to his body. So, let me remind you who Ezekiel was.
Ezekiel was a little boy who as a baby had the chunkiest cheeks! His hair was just wild and would stick out every which way. When I would visit Chelsea and Ezekiel, I never knew what kind of hair I would see. Would it be the crazy spikey hair that stuck out everywhere or would it be smoothed back into the models' swoop that made him look so handsome and typically get him kisses from the girls at school.
Ezekiel had a cheery disposition. He had such great belly laugh and a smile that would just light up his entire face. Ezekiel would laugh so hard that he couldn't catch his breath. His laughter was contagious. There was a time at school where he was playing with a bead curtain next to another little boy and just started laughing which caused the other boy to start laughing with him which in turn caused Ezekiel to start laughing harder.
Ezekiel loved his switch toys at school. He got to decide when they turned on and when they turned off. As with everybody, he loved to have a choice and was determined to make that choice known. Woe to the person who misunderstood what he was communicating to them. There was a time in school where Ezekiel was given a choice on which two games he wanted to play. Ezekiel chose game A. The teacher's aid started game B and then quickly learned that she started the wrong one and Ezekiel was not going to put up with that!
There was another time when I was visiting them and Chelsea was kissing him on his cheek and calling him, “My baby. And My handsome little man.” When she turned around to go grab something, he did the embarrassed eye roll that every little boy gives when his mother is kissing him in public.
Ezekiel loved having stories read to him while cuddling his mommy. He loved cuddling in general and was so good at just folding himself into you and just resting against you...
He loved music and when his mom would dance on the coffee table or on his mattress where he could feel the beat of the music. He loved movies and bright colors. He loved going to the beach with Mommy and feel the breeze on his face and hear the soothing sounds of the waves crashing onto the shore.
Ezekiel loved life. Yeah, his brain and his body did things to him that were not fun and were scary, but he loved life. He fought and was determined and laughed and loved and lived his best life. And we who had the privilege to know this sweet boy can learn from him that in spite of the trials and pain of this life, we can fight and love and laugh and live our lives the best we can.
I don't know about the rest of you, but it has been such an honor and blessing to be even a small part of Ezekiel's life. He was an amazing person who had such an awe-inspiring strength and determination and joy. He will be greatly missed, but never, ever forgotten.
Memory Shared by Heather Whittaker
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