How do you write about someone so close and dear to your
heart that it bursts just at the thought of trying to record it? I am not up to
the task of writing about our first-born son, our angel, but I have felt
compelled to share our experiences for over 3 years now. Here is an excerpt
from a letter I wrote to my family when our son was just a few weeks old:
“Yesterday our family received life-changing news. Nami has
been diagnosed with Tuberous Sclerosis. At about three weeks old I discovered a
couple white spots on his skin. Who knew a couple of white spots could implicate
so much? Our little family is reeling with this news as we know others in the
family are too. We appreciate all your love and support and know we will
probably be depending on you all for the rest of his and our lives. … It’s
amazing how in an instant the rest of your life can completely change….”
For the next three years, I would learn how prophetic those
words were. I had never heard of Tuberous Sclerosis Complex (TSC) before our
son’s diagnosis. This is a genetic disorder (a new mutation in our son’s case)
that grows tumors on your body’s vital organs. Now at 3 ½ years old, our son
has hundreds of brain tumors, heart tumors, kidney tumors and cysts, an eye
tumor and 3 different skin manifestations of the disease. He suffers from severe
seizures and is on the autistic spectrum. He is followed by at least 10 doctors
and has to endure constant testing and procedures.
In spite of his mental and physical difficulties, there is
something special about Nami’s spirit. He is a fighter. He is happy. He is a
great blessing in our lives.
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Love Nami and your sweet family. So glad you have a blog so I can keep up with you guys better!
ReplyDeleteLove this chubba bubba! So fun to see this old classic pic and to be reminded of the beginning. Love you guys!
ReplyDeleteAnnaka,
ReplyDeleteWe’ve not met, but I am Mel Gee’s husband and Mel brought your heartfelt blog post regarding your son Nami to my attention. I cannot pretend to know what you have experienced and felt since your son’s birth. I can only offer the experience of my first child’s - a daughter – journey from birth, so I do understand what fears, hopes, implicit guilt, anxieties, sense of unfairness, disappointments, victories, uncertainties, anguish and joy that can prevail. The countless doctor examinations, incessant testing, hours spent in emergency rooms and through the nights at Children’s Hospital with the relentless audible beeping monitors, nights holding and rocking her as she slept to be aware if her seizures returned, partially correct diagnoses, confusing prognoses …… all the while you are praying for your child’s future. Not to say that every parent doesn’t worry about their children, we do all their lives, but there is a certain rawness that goes deeper for a special child.
My daughter is still special in her early 40’s, but she works part time, lives independently, has a network of friends within whom she regularly communicates ranging from her 3rd grade teacher to peers, and she enjoys life as she knows it. I am grateful for the gift she has been in my life and though I always worry about the future for her, I am confident she will live it well.
Life’s path is unpredictable and wherever it leads Nami, cherish the moments and provide him a sense of optimism for the future, so that he may live his life as fully and independently as he can. I know that he will amaze you.
With best wishes for Nami, you and your family
Roy
Thank you so much for sharing your story with me. Your daughter sounds amazing and she is lucky to have you as a father. Although we have ups and downs we do need to always remain optimistic so thank you for that reminder.
DeleteI simply loved reading your comment and your hopeful thoughts to Annaka, a young mum only just starting her long journey with Nami. My story interlaces with yours in some points where I am compelled to write to you this short note. I am Milay and my lovely younger daughter who has just turned 31, has managed to conquer profound difficulties throughout her life. Somehow she managed to pull through and for the past nine years, goes to work everyday, being absent when her health fails, enjoys life and people to the fullest and has shown us a different perspective through her positiveness even when things seem to go very wrong. I consider you very blessed, the same way that I am myself so.
DeleteWith kindest regards,
Milay
Nami is so adorable and has such a sweet spirit about him. I admire you and your family's strength and faith through your trials.
ReplyDeleteLove you guys!
Sabrina
I am so happy you have begun your blog. Way to go. We love Nami and you and your family.
ReplyDeleteDear Annaka,
ReplyDeleteYour blog is a true inspiration to each and everyone who has the opportunity to read it.
May you always be a mother with all the strenght and clarity to take the best decisions for your lovely son.
It is a hard path but many times, there are very positive results with our very special children.
With love,
Milay
Thank you, Milay, for your support. I loved reading about you and your daughter. She sounds like a wonderful person with a wonderful mother. I know that even with all the difficulties, I wouldn't trade them if it meant I couldn't be Nami's mother. Take care,
DeleteAnnaka