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

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 is 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 it’s 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 a 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 for the better, and isn’t that the best thing to do?

I think it is.

Perseverance

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 shared 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 to develop his friendship with the pool and the deeper (3.5 feet) water. We went swimming in 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 shows 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

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 a tremendous amount of progress in all areas.

On 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 everyday 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!

Is this a dream?

Is this a dream?

“Is this a dream?”, the boy asked his mother as they stood in the hallway waiting for the elevator.

“What do you mean by this is a dream?”, his mother asked curiously.

“Is this a dream that I am going home? Can you pinch me? The boy replied

The mother pinched him ever so gently with a slight tear in her eye realizing the impact of this little conversation.

This was the conversation Lennon and I had Wednesday of last week as Lennon was going home. He had minor surgery the day before to fix his gastrocutaneous fistula, in other words, fix the hole in his stomach. And he handled everything like a champ. The waiting in the pre-op lounge was a breeze as he packed himself a bag of his favorite things: his stuffed cat, Ninjago Lego’s, his Ninjago Lego Book and his little Gameboy. He played the entire time, periodically voicing he was hungry. Once we were called we went into the pre-op area, he changed into the gown, laid on the bed and was watching Cartoon Network. He was quite happy about that since we don’t have cable or satellite tv 🙂

He was so calm.

The 40-minute procedure turned into 2 hours – the doctor didn’t anticipate or calculate in the scar tissue he had to battle with. Overall though Lennon did amazingly well. In recovery, we were met with familiar faces (faces we hadn’t seen in two years) and loved catching up on the progress Lennon has made. He was grumpy as he woke up – but nothing like he used to be – only wanted food. We waited to go upstairs into a room for one night for observation and making sure his prograf levels would go wonky.

Lennon enjoyed his time with cable television but the following day he shared this with me:

Mom, I want to go home. I don’t want to be here anymore. I mean I like it here, but I just don’t want to be here anymore. I just don’t want to miss my childhood.

And this is my response: There is an amazing maturity shining through Lennon. Those moments come and go but when they are here – I am in awe with his wisdom of his life.

And then home we went – like it was nothing.. not a dream – it was real.

I am still holding my breath

I am still holding my breath

I guess I never really stopped to breathe and perhaps there have been reasons that I never breathe completely normal or relaxed. This past month Lennon has increasingly (just about daily) complained about a headache at random times. He mentions’ it once and by the time we may get to give him something he doesn’t mention it again.  At the beginning of March we had a checkup because of them and then he had an ear infection (pretty normal stuff!!) but he still continues to complain now increasingly about the headaches hammering down on the same spot every time and I decided it was time for a follow-up.

The appearance is Lennon may have childhood migraines and they represent differently than adult migraines and now add in that this IS Lennon they don’t even come with nausea – but bright light will trigger a headache. Well, the concern is that the headaches occur on the same spot and so we are moving forward with a Brain MRI to make sure that there is NOTHING else going on with his precious little head. Of course, the irrational mom inside of me is going amok internally while the rational mom is the epitome of cool and collected. I seriously hope it’s just migraines and nothing else – and of course migraines are hereditary (guess who else has them – and of all the things he wants to have in common with me – sigh).

Stay tuned as I will surely update here 😉