Be open to the gift of life no matter where it takes you

7 years.

That’s how long it’s been since Lennon’s first liver transplant.

When we made the decision to move forward with the transplant, there is no way we could have known of all that occurred after. All we had, was hope.

Hope that the transplant would indeed ease Lennon’s life. That it would bring us some kind of normalcy that didn’t involve going to the hospital 2-3 days a week.

During the month and years that followed, hope is all we had to hang onto. Hope that it for Lennon’s future become more about the quality of life rather than quantity.

 

Life is different now, improved and riddled with less anxiety.

How far is he’s come because of this gift and the lessons we all learned along the journey, I honor them. With each struggle, infection and liver that Lennon was blessed with, we learned more about him, the way he shines his light into this world, teaching us what being open to the gift of life really means.

I say it time and again, Lennon doesn’t know what it means to be pissed off or hold it against people. And its beautiful. He gets mad like we all do at times but he doesn’t stay there. Instead, he bounces around the house singing or talking, usually having conversation with himself or his game and periodically giving me a hug-attack.

There is no stress about how he is going to do something because he doesn’t believe that he can’t. Sure he does things differently, but don’t we all?

I say this every single year, but I am forever grateful for the families who have made the decision for organ donation during their time of grief. I don’t know who they are, but I love them dearly and like every year, I will light a candle tonight (and on the 21st for liver #2). Each family deserves to be remembered for the gift they have brought to this world.

And I encourage you to be an organ donor because you are helping change someone’s life to the better, and isn’t that the best thing to do?

I think it is.

Happy Birthday Lennon

We reached another milestone in life where this amazing warrior is 12!

It’s simply amazing how he has fought to be here and continues to inspire the people he meets. His energy  and spirit are infectious to be around and if you are ever down, man all I need to think about is where he’s been or he comes in and ignites life into the moment.

His spirit and essence are just that, life.

Reminding us to go after our dreams – to enjoy the moment. Holding grudges and hanging on to negativity will only keep us sad and unhappy. And while all moments are not rosy – I relish the fact that he’s here!

Below are 12 pictures to commemorate parts of his journey.

The memories won’t let go but love will keep us moving

This morning I read this article “What I Wish Others Understood About Almost Losing a Child” and it is just one of those things that will always be with me. I don’t have the morphine bottle deep in the fridge but I have make sure Lennon takes his meds twice a day, every day or his body will reject his liver.

It’s my daily reminder of what his and our journey has meant.

A friend of mine bought a copy of the “Lennon Steps” today and posted about it soon after and I wanted to share what she wrote:

I have read the entire book. I have cried with you, laughed with you and continued to pray for you and your family. I have the overwhelming urge to kiss Lennon’s forehead, and ask that you do that for me. 

Thinking back, I remember how my daughter would come home excited that Lennon was back in school; how his new feeding tube was just like the one her nanny had; how she could’ve helped with his feedings. He is touching lives that you have no idea about. What a miraculous child he is!

I am able to share the story that allows me to have a happy ending but what I don’t often talk about is the memories, the thoughts, the experiences and the conversation that are still running through my head. I think I tried to convey that in my book and while I don’t lose sleep over his journey it is still such a part of my daily existence. A constant reminder of how we are given this one life to live it in full and for me personally to make an impact and to help others.

It’s in those dark memories I find my strength, the strength of Lennon and the strength of the rest of the family. We all hold that mutual bond knowing what could have been and what is. It is in those moments, I know what unconditional love truly means and what the impact of hope and faith can have in someone’s life.

I am grateful that these heavy days of emotions are becoming less in my existence but truly I don’t ever want to forget how precious life is and that it life is always about quality.  Love will keep us moving to heal our wounds.

2015-05-13 16.58.35

And here’s a cute recent photo of the warrior with his new set of glasses (and yes he looks even more like me now)

He’s doing really well health wise, his labs have been coming back looking good and he can eat.. oh goodness can he eat.

The school year is winding down for us and umm within the next couple of weeks this guy will step up from 5th grade – a teary eyed post is sure to come