A boy named Lennon


Lennon was born with a rare metabolic genetic disorder called Urea cycle disorder - CPS Deficiency. He was diagnosed at the age of 4. In November 2008 he underwent not one but two liver transplants in order to save his life and could potentially face another transplant. This is his story.

Yeah we all shine on, like the moon, and the stars, and the sun. John Lennon

Mother Sells Soap To Raise Money For Son With Rare Genetic Disorder

Mother Sells Soap To Raise Money For Son With Rare Cancer

They didn't get it quite right... Urea Cycle Disorder is not a Cancer but a metabolic genetic disorder.. but it's been shared... I work to support my family and the urea cycle foundation... its important to me.. its affected our family as you see.. or rather have read.

Let me tell you that Lennon was excited to be on tv... but he was even more excited to see his mom on tv.. not sure I have ever seen a bigger smile than that. Get a glimpse of him in the story link above...


So awhile back I was interviewed about why I do what I do... meaning supporting the family with my business and supporting the National Urea Cycle Foundation with a section of sales. You can read the article here. Today I received a phone call from the local cbs news station to do an interview about why I do what I do. I am elated to no end that more info about UCD's will be shared and the fact that not only do I support my family with it but paying it forward so to speak.

I am beginning to move mountains one pebble at a time!

There's a beauty in his life called living

I don't think Lennon knows anything else other than just be himself and live life. He doesn't know anything different. Lennon is affectionate (sometimes to the point of being too much...really? Is there such a thing as receiving too much love from your child?). He is a constant reminder that you should always be who you are, love every day, get mad and get over it, be passionate about the people and things you love - even if they are just ideals and even if they don't conform with most people i.e. society.

This morning his gentlessness, compassion and thoughtfulness that we are able to see on days he's feeling well shines. After his morning ritual of bath time and picking out his breakfast- he went to talk to his brother. When he returned he said:" Sorry it took so long, but I had to say hi to him". Never apologize for talking to the people you love.. Lennon certainly lets everyone know that he thinks about them, that he loves them and that they matter to him.

Yesterday, he was looking through a magazine and saw a picture of a stick-figure family. "Hey mommy! This is us!" as he went on to recall everyone's name that matter to him. I love these moments. The moments that he clearly means: people I love you! Hear me! Listen to me! Pay attention to me!

Sometimes there is this battle (my battle) of whether he knows/gets it that he's sick and that he will undergo more surgeries. Who knows,  but it begs to question that if he knows... is that the reason for the ultimate affection? Or is this simply Lennon - Lennon who merely loves the world he's living in. No I don't contemplate this too much, but occasionally it does make me wonder.

Occasionally I know we all get aggravated and irritated keeping in mind that his is Lennon - the uber-affectionate to the point that sometimes one can't breathe. All Lennon wants is to spend time with someone. Lennon *Fixates* on people - one day its all about mom - the next about one of his siblings - it changes sometimes day to day ...sometimes week to week .. I always hear myself saying:" So? Spend some time with him!"

There is such a tremendous amount of Lessons I have learned and are still waiting to be learned. Everyday I am grateful to the children that I have - each of them having taught me different lessons but the best lesson I have learned is to truly embrace each day - one day at a time and love the people in your life - be passionate about the things you belief in... ok so I learned more than that ^_^

In health news.. Lennon is stable - progressing slowly, meaning that his lungs are not working a 100% and that there are more signs of being more blue occasionally. At this time - a transplant is literally the only cure for his oxygen issues to resolve. We are waiting - with a calculation of 50 points - somewhere in the top - waiting any day any minute for the call.