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.

Advertisements

Perseverance

Lennon is the definition of perseverance, if you have followed his incredible story you of course know this already 🙂

Let me tell you, at the beginning of summer, Lennon hated the idea of camp and leaving his comfort of watching YouTube Videos and playing video games.

During the first week, he shared with me that he actually likes summer camp and is happy that he is able to go and participate.

While those are his own little changes of attitude, is not what I wanted to share.

Earlier today I shared this photo

What is so incredible about this is that two weeks ago, Lennon was pretty scared of the water other than his regular bath of course. Even though water has always been his calm, as he got older and healthier he naturally developed fears. He’s very attracted to the water and I could see the determination that he would overcome whatever it was that was holding him back.

It all started with him going down the green slide and he struggled to get himself together. He shard with me that he felt like he was going to drown. He expressed that he wanted to learn how to swim. However, first he needed to get comfortable enough to put his head under water.

The first week of camp, he played in the pool like he’s always had developing his friendship with the pool and the deeper (3.5 feet) water. We went swimming at the nearby pond with a ring, where he was able to continue to make his acquaintance with the water and show me how to peddle his arms and legs.

One of the camp counselors even attempted to teach him how to swim but he was not ready to dunk his head under water, which will be a requirement for his swim test.

I watched.

I watched him practice holding his nose and going under water.

I watched him move his arms and kicking himself off from the bottom of the pool with his feet.

I watched him practice trying to float, kicking his arms and legs as one does when one tries to swim.

Today..today he was able to float.. no wait.. he was able to swim while not far.. but he did it. He showed me how to move his arms and legs for 3 feet.

He showed his camp staff what he worked so hard to do.

Time and time again he shoes us that if you want something you must be persistent and you must persevere.

You don’t give up and you don’t quit until you get it.

It is quite rare that Lennon will walk away from something and decides to quit.. and as I try to recall a moment where he may have – I just can’t think of any.

I am so very impressed with him and proud 🙂

Most dreaded day of the year

IEP meetings are sometimes a curse and a blessing.

One one side they tell you how much progress your child has made.. and yes Lennon has made tremendous amount of progress in all areas.

One the other side, he is still so very much behind on everything.. reading on a third grade level (he’s in 4th grade) ..math he’s still quite behind.. and handwriting, and processing and expressing.

Socially at times still awkward, he is quite affluent in getting along with his peers, he’s surrounded by peers during lunch and learning how to maneuver the social how to hold a conversation and be interested in other people and not just talking about his own interests.

You learn that Occupational Therapy, Speech Therapy and Physical Therapy are still very much a big part of his every day school life and still very much a big part that needs to be to help with fine motor skills, speech processing and well physical therapy.

The surgery in January set him back quite a bit and he now has to work again on gaining core strength. He is being asked to sit for a long time which still tires him out quite a bit. He negotiates a coloring page of his favorite lego character at the moment or minecraft character so that he will do some work for the teacher.

Lennon spends part of his time with his peers in the classroom and the teachers assistant.. the other part he is being pulled out for.

It’s really a lot to digest if you think about it – he is working so hard (harder than most) and is slowly emerging. He may tell you he doesn’t like to read.. but really he loves to read 🙂 I catch him reading all the time and my heart swells with pride.

We briefly discussed middle school options cause well he’s moving onto 5th grade and the assigned middle school – I don’t know.. I have some serious doubts about that one.. and so I think exploring options that will be best suited for him will be necessary.

Overall I think the census is that Lennon is progressing and that he will progress but we are unsure at what pace he will continue .. not a terrible IEP meeting but still tears at my heartstrings and makes my heart a bit heavy .. but if anyone can reach his goals … there’s no doubt that Lennon can do it!