HER2 Support Group Forums - View Single Post

VDC · 05-31-2016, 08:45 PM

Norkdo,
You sound So much like myself 16 years ago when our then 7 year old son was diagnosed with Homozygous familial hypercholesterolemia and we were told most likely he would not live to see his 20th birthday. I had no idea how very very weak I was until that moment, when my entire world shattered. I lived the next two years watching him grow through tears, each birthday was devastating knowing that it brought us one step closer to the moment when he would no longer be with us. As I watched him play I would turn away and cry. Some nights I would just sit in his room and listen to him breath....wanting to etch the sound into my mind so I would never forget it. After about two years though, I realized that I was missing the joy of this moment. At THIS moment, he was here. At THIS moment he was laughing. At THIS moment he was saying "I love you." And, I was missing it because I was viewing it through the future....which of course was predicted, but no one truly knows the future.

At that moment I made a choice to live in THIS moment. AND to fight for the future. I took time to sit in the floor and build lego's......and laugh. I stopped cleaning house (after all it was just going to get dirty again right?) I started researching his disorder until I became an expert who knew more about it than most of his doctors. I did research on my own that stood outside of conventional medicine. I went back to school and entered graduate school in Organic/biochemistry and studied "Bile acid sequesterants" (a drug for familial hypercholesterolemia). I learned. I fought. And I laughed with our son.

One thing I learned was to listen to the whispers of God. I know not all of you will understand or believe this, but God IS whispering direction and I strained to listen. And I learned to hear. We went against medical advice and refused to do LDL apheresis with our son because we believed God directed otherwise. It was frightening. We wondered if we were doing the right thing. It took until the age of 17, but at 17 his doctor shook his head and admitted that we had made the right choice.

In the process I learned to live in this moment. I learned to never give up! I learned to research! (which came natural to my personality anyway) I learned to listen to God's prompting. And I learned just how much I had been missing out on even before his diagnosis because I was living by "chance" rather than by "purpose." We began to parent by purpose rather than chance. And it revolutionized our lives. THIS moment is precious regardless of the outcome! We have continued to live with "purpose"

Today I helped my TWENTY THREE year old son fill out job applications. He graduated last month with a degree in Computer Engineering. He has no heart disease (this is what kills people with Homozygous familial hypercholesterolemia), and his LDL cholesterol is normal on a combination of 6 medications and 4 supplements. He is healthy even without the LDL apheresis that had been pushed on us, but which we refused. God had been right as I suppose he always is. ....although I often forget that when I'm in the midst of a "life challenge."

And here I am, leaning in, straining to hear the whispers of God's voice leading me where I should go in this current "life challenge." But regardless of the outcome, I know this......THIS moment is sacred! THIS moment is treasured. THIS moment is full of joy!

Does that make me strong? No. I just means I have come to the place where I fight for the future, but without leaving the present. I have come to the place where I am reluctant to take one step without God's whisper leading me there. I don't think that makes me strong, although it does bring joy to today! And really, none of us knows if we really have tomorrow. I could cross the street to get the mail and be hit and die.

I suppose in the battle of the mind.....I HAVE won. Not that I am successful in every moment. I have my moments like everyone else, I just don't stay there. I am living for the moment, and I am loving every single minute of it!

Living in the moment doesn't mean that I don't consider the future. It is why I study and learn and try. Of course my personality would find it hard to do anything else ;-) So research I will! Clinical trials I will join. And I will laugh! Life is much too short to spend it doing anything else but laughing!

05-31-2016, 08:45 PM	#42
VDC Senior Member Join Date: Jan 2016 Posts: 122	Re: I think I'm in trouble! Norkdo, You sound So much like myself 16 years ago when our then 7 year old son was diagnosed with Homozygous familial hypercholesterolemia and we were told most likely he would not live to see his 20th birthday. I had no idea how very very weak I was until that moment, when my entire world shattered. I lived the next two years watching him grow through tears, each birthday was devastating knowing that it brought us one step closer to the moment when he would no longer be with us. As I watched him play I would turn away and cry. Some nights I would just sit in his room and listen to him breath....wanting to etch the sound into my mind so I would never forget it. After about two years though, I realized that I was missing the joy of this moment. At THIS moment, he was here. At THIS moment he was laughing. At THIS moment he was saying "I love you." And, I was missing it because I was viewing it through the future....which of course was predicted, but no one truly knows the future. At that moment I made a choice to live in THIS moment. AND to fight for the future. I took time to sit in the floor and build lego's......and laugh. I stopped cleaning house (after all it was just going to get dirty again right?) I started researching his disorder until I became an expert who knew more about it than most of his doctors. I did research on my own that stood outside of conventional medicine. I went back to school and entered graduate school in Organic/biochemistry and studied "Bile acid sequesterants" (a drug for familial hypercholesterolemia). I learned. I fought. And I laughed with our son. One thing I learned was to listen to the whispers of God. I know not all of you will understand or believe this, but God IS whispering direction and I strained to listen. And I learned to hear. We went against medical advice and refused to do LDL apheresis with our son because we believed God directed otherwise. It was frightening. We wondered if we were doing the right thing. It took until the age of 17, but at 17 his doctor shook his head and admitted that we had made the right choice. In the process I learned to live in this moment. I learned to never give up! I learned to research! (which came natural to my personality anyway) I learned to listen to God's prompting. And I learned just how much I had been missing out on even before his diagnosis because I was living by "chance" rather than by "purpose." We began to parent by purpose rather than chance. And it revolutionized our lives. THIS moment is precious regardless of the outcome! We have continued to live with "purpose" Today I helped my TWENTY THREE year old son fill out job applications. He graduated last month with a degree in Computer Engineering. He has no heart disease (this is what kills people with Homozygous familial hypercholesterolemia), and his LDL cholesterol is normal on a combination of 6 medications and 4 supplements. He is healthy even without the LDL apheresis that had been pushed on us, but which we refused. God had been right as I suppose he always is. ....although I often forget that when I'm in the midst of a "life challenge." And here I am, leaning in, straining to hear the whispers of God's voice leading me where I should go in this current "life challenge." But regardless of the outcome, I know this......THIS moment is sacred! THIS moment is treasured. THIS moment is full of joy! Does that make me strong? No. I just means I have come to the place where I fight for the future, but without leaving the present. I have come to the place where I am reluctant to take one step without God's whisper leading me there. I don't think that makes me strong, although it does bring joy to today! And really, none of us knows if we really have tomorrow. I could cross the street to get the mail and be hit and die. I suppose in the battle of the mind.....I HAVE won. Not that I am successful in every moment. I have my moments like everyone else, I just don't stay there. I am living for the moment, and I am loving every single minute of it! Living in the moment doesn't mean that I don't consider the future. It is why I study and learn and try. Of course my personality would find it hard to do anything else ;-) So research I will! Clinical trials I will join. And I will laugh! Life is much too short to spend it doing anything else but laughing!