There are always lessons to be learned in life if you are open to recognizing them and most importantly if you are willing to listen.
My son Lennon has been changing people’s lives, inspiring them and motivating them into being more present, to not take anything for granted and also showing the shadow side of life is too short to be miserable.
When I tell people that, Lennon is my greatest teacher on how to do life, I am not joking.
The kid knows what he wants and he’s quite verbal about it too.
And what you may not know, if you’ve never heard about Lennon, read the blog posts or the book is that he survived his first 4 years of life, living with a potentially fatal rare genetic disorder. And since it was undiagnosed for some time, his brain took a little bit of a hit in the cognitive area – but don’t let that fool you.
He is often one of the smartest people in the circle. His wisdom is often leaving me speechless.
The other day he said:
You have to be ready at some point, so why not be ready now?
Sure, you could delay being ready but aren’t you just putting off the inevitable?
The moment you decide to go after what you want – your dreams, goals and a life that feels good – is the moment you are ready. You can, of course, keep talking yourself out of it but why? What’s the point?
- Start that business
- Write that Book
- Get healthy
Be ready now and stop waiting for one day.
It isn’t always about the things he said, although they are brilliant and yes I realize I may be a little bias, but the thought has crossed my mind that people needed to spend time with him and hear his story. He’d never go for it and I got to respect that. That, of course, doesn’t mean I won’t share life lessons along the way.
Like anytime I hear someone complain about how shitty life is or how miserable they are.
Because of the genetic disorder becoming unmanageable after his diagnosis, it was recommended that he has a liver transplant because while there is no cure, this can change his life for the better. And so that’s what we did but we couldn’t fathom the fact that he’d have 3 liver transplants between the ages 5-8 and that things were really tricky for a while.
But here’s the thing, no matter how dicey things were, how painful everything was (physically or emotionally), he got up and did what he needed to do. That doesn’t mean he didn’t complain but it seemed he just knew what he needed to do in order to get home from the hospital or get back to school.
Or like now where he’s saving up for an XBOX One and he’s diligent about the chores that help him earn money.
And some days are hit or miss, but he’s never quit if it’s something he wants.
I think that’s an important lesson.
Don’t quit the life you want to have.
It takes dedication, commitment, and a willingness to go against the status quo. Even if it means people don’t like you or you don’t fit in.
Lennon isn’t worried about fitting in.
Lennon is worried about what video game he’s going to play.
So, don’t worry about fitting in, instead figure out what you are going to do next that you want to do and of course could have an impact on your life.
Worry (not really) about the important stuff. Get excited (Yes this) about it!
Choose to wake up with joy in your heart!
There aren’t many days I recall Lennon ever to be angry or grumpy (unless the pain was too much). That doesn’t mean he doesn’t get upset, it just doesn’t stick around long enough. I think he doesn’t know how to hold a grudge of any kind because he just is filled with joy and it shows.
There’s something very genuine about it and it always reminds me that you get to choose how you feel, how you engage, express yourself.
Choose to be angry, you’ll feel miserable and wonder when life will change.
Choose to feel and be joy, life looks different filled with gratitude and like an adventure.
What will you choose?
It’s April and that means it’s Organ Donation Awareness Month. One month to talk about donating organs, tissues or eyes to save lives.
I have always been an organ donor but not really considering the impact I could have on giving life to someone else. One person has the potential to save 8 other lives and help an additional 50 people.
So who is Lennon and why does this all matter?
Lennon is my youngest son (now a whopping 13 years of age) but we didn’t always know he would get this far.
Lennon was born in 2003 and lived with an undiagnosed rare genetic disorder for 4 years. And one might wonder how this was undiagnosed for so long, and the simple and yet complex answer is that since it is rare, there is little data in what you would call mainstream medical information.
But once we had this diagnosis, some damage to his system had already been done. He was delayed in several areas of development (physically and mentally) but what was more important to us was to know how to help him, manage and care for him.
Here’s what Urea Cycle Disorder does in short:
Because the individual is missing the enzymes to remove ammonia from the bloodstream and this will lead to hyper-ammonia episodes. You can read more about UCD’s right here: National Urea Cycle Foundation.
Within a year of learning to manage his genetic disorder through a strict diet of limited protein, added amino acid formula’s and swallowing 18 pills a day, we were unable to keep it under control.
His geneticist recommended a liver transplant, an alternative way to manage the urea cycle disorder.
In all the decisions I have had to make in my life, this was by far the most difficult and challenging and a lot of our questions couldn’t be answered. And we made the choice to move forward despite the risks. It is without a shadow of a doubt that without this, the urea cycle disorder would have eventually taken his life.
November 2008, at the age of 5, Lennon received 2 liver transplants 3 days apart. Crazy! And the months that followed were hard because his recovery was not just about the organ transplant, but about a collapsed lung, infections left and right, ascites in his abdomen.
A fight like no other!
He spent several weeks on the breathing tube fighting for his life – and we on several occasions we had the doctors tell us they were doing everything they could do, medically. The rest was up to him and the higher power!
Now I am not going to bore you with all the details, you can read about them in Lennon Steps. But I will add because life is crazy and a miracle all at the same time, he received a third liver transplant in 2011.
His recovery was nothing like the first. In fact, it was a breeze. We were home within 2 months and started living. Actually living.
- He was started to eat and eventually we ditched the feeding tube.
- He started to grow and we had to buy new clothes.
- He started to learn and even retain information.
- There is laughter and smiles all day long.
- There were hugs and I love you’s.
I don’t have to tell you how precious or amazing life is.
What I do want to tell you is that organ donation is a true gift and the only way for me to ever return this gift is by being an organ donor.
And encourage you to be one too.
You can make the pledge right here on this website: orgondonor.gov
What can you do?
Become an organ donor!
6 years ago in the early morning, my phone rang with a call I didn’t expect so soon. It had only been three weeks since he was listed on the transplant list.
Transplant Coordinator: We have a potential liver. I am checking on how Lennon is feeling and letting you know to be on stand-by.
Me: Lennon is good – no changes and no cold.
And my mind began to race and my heart began to flutter. Omg is this for real? Are we ready for this? Is he ready for this? Am I ready to let this happen?
I pulled myself together because calls had to be made and things had to be readied. And then I waited for the second call to come in. I was sitting on pins and needles. And then the phone rang!
It’s a go .. come on in.
And we headed to the hospital. It is needless to say that none of us were prepared for the months to come – and maybe had I known the difficult road this would be for Lennon and myself, it could have changed things a lot. His urea cycle disorder was too challenging to manage and not having the liver transplant would have meant that his days were numbered on this planet.
I placed my faith into the doctors, nurses, my friends and family as well as myself that this would be the right decision. And despite the events after the initial transplant, the fight Lennon had to do in order to still be here today, I will always be grateful for the first donor family that so graciously decided that another person should have the opportunity to live even during their time of loss.
There will never be enough or adequate words to express my gratitude because of them we were given a chance. A chance at life. A life without urea cycle disorder. A life without hyper ammonia episodes. But a life with an engaging personality that you want to be around because he makes you feel good just to be in his presence.
A friend of mine told me she loves being around Lennon because of his calm. I couldn’t help but chuckle because at home or in the presence of people he is comfortable with, he can be a little chaotic but in a fun charming kind of way. But then Lennon in a crowd does have this ability to feel good and I supposed once you know his story, you can’t help but admire him and be inspired to live life in a way that only he has been able to show me.
Real and in the moment presence.
And it is with those thoughts that I consistently remember the call and the first liver transplant he underwent.
Forget yesterday – don’t worry about tomorrow.
Just be present!
Wake up singing, relax and handle one task at a time. Follow your dream and enjoy your passion.
And really, is there any other way to live?
Lennon has been complaining about headaches for a few weeks and I made him a long overdue eye appointment. If you have been following his story, you may remember that immediately following the urea cycle disorder diagnosis, Lennon went blind for about 6 months or so, if not that’s okay!
Anyway, the appointment was at 2:30 and we got in, registered and after 15 minutes or more waiting, we were called in a room for an eye test. Lennon was engaging, fascinated and super excited – silly boy actually WANTS glasses. Well, we went through it and back into the waiting room we went.
And about 4:30 we FINALLY saw the doctor who reviewed his history, asked me a bunch of questions and ordered two more tests.
Now mind you, we did not have the Kindle with us, nor the Ipad and my phone battery… well died. Lennon was maxing out fast with patience and it took everything I had to keep him entertained and supported as he was struggling more and more as time went on. We looked at magazines, used the bathroom and despite it all – we both began to struggle and patience was wearing thin.
And then we heard his name..whew.. ok let’s do this…
Visual test to check his peripheral sight in his eyes.. one eye is better than the other.. yep this is how Lennon rolls. This test is a mere 15 minutes but Lennon who had already struggled so much worked hard, fidgeting in his seat to hit the button every time he saw a light. I was on the edge of my seat too.
Immediately following was the dilation of his pupils and this is where he lost it and I was mustering everything I had to get us through this. The first drops went in and my 11-year-old boy flew into a rage of “hell to the no” you are not doing this again.. but it had to be done. We made it through the ordeal but Lennon was a mess and well me too and so I just held him for the longest time, questioning if this really was all necessary.
I knew it was because it had been an incredibly long time since his eyes were checked.. and well headaches, who needs them?
We waited in the waiting area – the last people there. Receptionists, residents, and other techs had already left the building.
Pictures of his eyes complete, we saw the doctor one more time and the result is that Lennon is nearsighted, and because he’s so young as he gets older, it will progress to becoming worse.. thus glasses forever … it’s not the end of the world but the visit was incredibly dramatic.
The good thing?
We don’t go back for 2 years!
Lennon has been quite emotional for a few weeks actually and this evening it was another I am crying and I don’t know why moments. I think in the past we have always attributed it to his medication, and yes while he is in Steroids, I don’t think it is always about what kind of medication he is taking.
I think sometimes he is genuinely just emotional because he has a communication breakdown within himself – not everything is connected for him the way it is for other kids his age – add in that he is still emotionally delayed and doesn’t possess all the verbal skills, trying to decipher is like learning a new language.
Most times I can only take him into my arms and hold him and let him cry and tell him that I will love him no matter what. Sometimes his crying spells are triggered by him not following directions – sometimes purposely and sometimes because well he just can’t help himself.
Well, he was already grumpy after I picked him up from work and he “didn’t want to talk about it”.
Then at bath time, he was so focused about his “kindle” time that he was upset that I made him take a bath. He rushed into the tub, dunked himself into the water and got out.
Woah, Nelly.. this isn’t how we take a bath I said. “Get back in the tub, wash your hair and your body”.
And right after he did what I had asked he had a complete meltdown because he “I made you upset”, he said.
We discussed the issue on hand – cuddled for a wee bit until he was ready to let go and return to his “kindle” action since he still and a bit of time before he was going to bed.
And just like that, everything was well in his world.
As we said good-night to each other he shared that he didn’t have a very good day and I was able to share that I had a rough morning. He proclaimed that just the evening was terrible but he couldn’t explain why.
“This can happen! But you know, tomorrow is a new day and we get to try again”, I said.
And with those words, I tucked him in, wished him sweet dreams.
When I first became a mom I thought about the conversation I would have with my kid. I dreamt about telling some of the crazy stories from my own childhood minus a part here and there.
I dreamt of happy and healthy children, who would have amazing careers and create their own little families. What I didn’t envision is that one of my kids would be ill and that he would eventually be able to tell his own amazing yet scary almost unbelievable story of going undiagnosed for 4 years and three transplants later.
And yet in all those 22 years of parenting and 11 years of being a special needs kind of mom, I never thought I would have the conversation about taking too much medicine and what it could do.
Yes, of course, I have at one time or another explained that too much Tylenol isn’t good for you. Or that one could alternate between Tylenol or ibuprofen in order to feel better.
Tonight I was reminded just how different parenting Lennon is compared to his older siblings. His oldest brother who recently completed his time in the Army and joined the life of civilians or his other older brother, who is you know just a typical teenager.
Lennon: Mom what will happen if I take all these meds?
Me: You will probably either be really sick or not wake up – ever
Lennon: Really? I would be missing school?
Me: You would miss school and so much more. I could die – and a lot of people would be incredibly sad about it.
Lennon requires a lot of explaining. The kind of explaining that you are not sure if it will make sense or even be real to him. Lennon’s short-term memory was damaged during the ages of urea cycle disorder and so repetition is necessary and the key too much of his learning. It’s hard to figure out how much of a repetition he needs until it sticks and so I foresee that tonight’s conversation will not be the last one.
This week, next month, next year or even several years, for now, I will talk with him again of what could happen if he overdoses on *any* of his 10 medications – and what that may look like.
Tonight I hugged him tightly and called him my sunshine .. and he broke out in a song “I’m walking on sunshine”
So soon he has forgotten the conversation that tugged at my heartstrings.
Sweet Dreams my boy – see you in the morning.