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It is amazing to me that we have managed another Christmas at home considering we have been waiting on a new liver for almost 5 months now. It’s one of those we wish it would have happened already but glad we were home moments.  Lennon appears ok probably to people looking at him, but I notice the changes. I noticed the blue-ish tinted toes, the bruises because is coagulation is off.. the labored breathing when he gets too excited…and yet knowing that he’s sick or getting sicker he still manages to make me and everyone around him smile.

Santa got him a cleaning trolley with his own broom, mop, bucket, dustpan, spray bottle an a Diego Rescue Center. He loves both of them very much.. he has already mopped the kitchen…and rescued animals numerous times a day. Though he had been wishing for a x-box, he didn’t get one.. and he doesn’t appear upset over it… whew.. because we already one one anyway.. I’ve been taking snippets of video with my phone but hope that I can make an extra hat or two to get a small, cheap but good video camera.. I think I need to memorialize my family a bit more.. ya know memories.. pictures are awesome.. but can you imagine videos.. and me having the ability to share them with you?

I am a bit anxious, nervous, sentimental among other things… 2 years ago he was fighting for his life in the PICU.. last year we celebrated Christmas at home but soon learned that he was getting sick (again) and this year we managed to be home.. well Lennon wants his lunch …

…this year I am struggling to get into the spirit of the season…but it takes a child to make your heart smile.. Lennon had made salt dough ornaments that he painted… and well was ready to put them on our tree.. our white little fake tree.. the one thing he was most concerned about is that the star he made last year was on absolutely perfect…while all the other ornaments just about hung of the same branch…

As we are continuing to wait ..4 months and counting… I am amazed at the things Lennon has accomplished.. the relationship I have been able to mend and forge with my other children as he still often takes most of my attention… its a balancing act no doubt…my oldest joined the army and will leave for boot camp in May.. while my 12 year old his heading into male adolescent years…oi life goes on… even when another child is ill..and just because I struggle with this season doesn’t mean my children should have to struggle too…with that said our tree is up..

This week Lennon’s points on the transplant list should go up.. in the mean time.. Lennon’s progressing to be a little bit more sick. Sick to the point that we now decided to restrict any extra extraneous activity such as physical education in school and try to keep a very active 7 year old mellow/non-active. I have no idea how this should or would work… because it isn’t right now.. well I can control P.E. and Recess by not having him in school… I can’t control him not running from one end to the house to the other.. ugh..

There is conversation about whether or not he will require supplemental oxygen.. and that can be tricky… in some folk oxygen makes them loopy, changes their personality.. in other words they may appear crazy.. in other folks it doesn’t.. and merely just gives them oxygen.. so this is something still being worked out.. its terrible watching that life-loving boy run and his lips and/or fingers turning blue… simply because the oxygen can’t get into his lungs properly…Lots of times by the end of the day.. Lennon’s looks very ill despite the quirkiness.. he doesn’t act it… that’s for sure. He’s been dealing with the same/similar cold for awhile now and it won’t go away.. coughing also a symptom of the lung issue.. starts to increase in the evening hours.. the challenge is knowing is the coughing from the lung issue or is it because of the drainage of the sinus into his throat..

It makes my heart ache..

Just talked to Pittsburgh…. still waiting on the right size and the right blood type for a match. He will go up on the list beginning of December with 53 points (he has 50 right now). In the mean time, the scans we did with his lungs confirmed that Lennon has Hepatopulmonary Syndrome — A Liver-Induced Lung Vascular Disorder. Which is a syndrome of shortness of breath and hypoxemia (low oxygen levels in the blood of the arteries) caused by vasodilation (broadening of the blood vessels) in the lungs of patients with liver disease.

The docs suspected as much and the scans merely confirmed this. Of course it doesn’t change anything in our plans moving forward with the transplant. If anything, its one of those things that has to happen. The lung situation will only get worse the longer he has the current liver.

In other news, Lennon has learned to identify his name and write it too except if forgets the second n. He’s making progress with the letters he’s learning and the numbers.. it is a slow process but nonetheless he’s learning!

November 18, 2010 it will have been 2 years since the first liver transplant surgery. It (in my mind) should be a big celebration of life – of his life – of having been given the chance to live life. Clearly in my head I know that it is what saved his life but it is heavy in my heart that we will have to experience this again.

I remember the time before despite being riddled with ammonia in his system the zest of life he has – this indescribable thirst of living. I remember the months we spend praying, hoping, crying, praying some more that he will make it. That he has enough will power to come off the breathing tube – that his body has the strength to do the healing it needs to do.

I remember the time when he came home like a wilted little flower who was unable to embrace life – who appeared depressed and the light in his eyes was gone. I remember the days and months it has taken for him to be Lennon. To be center stage, to be full of life, to be funny, to keep us on our toes, to be charming and even manipulating everyone around him to get his way. I remember the experiences in my heart and in my head.

I want to celebrate his chance of having a wonderful life, but at this moment I am doing this with a heavy heart because I know another liver transplant is pending – and I worry – I worry about so much. I worry about him making it through the surgery and the recovery to come. I worry about my other kids how they are coping and how they will be coping.

It is a difficult feat, sitting at the edge every day and when the phone rings looking, wondering, hoping, dreading that its the hospital telling me that they have had an offer for a liver. My heart hurts reflecting on the experiences we have had already and the experience to come – whatever this may be (because we don’t know). We just don’t know…

Before I get into this post – Lennon is doing ok. He currently has a terrible cold (and has brought on this post) but still exhibits the same thirst for life and learning as ever. There has not been a word about the transplant and so we are still waiting – kind of eerie as we are coming up on the 2nd year anniversaries for transplant one and two.

Now to my grief if you will.. so Lennon has cold brought on oh by the weather change – it is fall now and well that the people in the school can’t make sure he puts his coat on before he leaves the building and well that he is still immune suppressed etc. Yesterday, Lennon went to school just like always when he has a bit of a runny nose. It wasn’t anything that any of us have never dealt with because I am sure we have. At 12 p.m. my eldest calls and says the school wants us to get Lennon because they can’t get anything done since they are constantly wiping his nose. Uhm Lennon can wipe his own nose. Yes he has a disability and yes he has special needs but there are some things he can do. He only had one our left of school – that last hour consists of recess and lunch. Say that again and they didn’t have anyone that could bring him can we come get him. Ok – we did. Perhaps it was worse than I thought – perhaps he had developed a fever. Nope just a runny nose that’s all.

Then I find a note in his backpack stating that Lennon had a runny nose and it needed constant wiping and they couldn’t’ get much done due to the constant wiping of said nose. What? Again Lennon could have done this himself and I am growing frustrated. Just last week I learned that he wasn’t receiving speech therapy like I believed he was receiving and I feel he needs to be receiving.

So now I am left with the thought, well maybe I am better off.. no maybe he’s better off if he’s being home schooled. Then I would know that he’s working, and learning – because he can learn. He has finally learned to identify all the letter of the alphabet (YAY LENNON). He still struggles with his numbers but even that will come in time. The one thing that hinders me from really moving forward is the socialization that Lennon gets from going to a public school. Yes I know home schoolers get to do lots of activities, with the right organization play dates, field trips and so forth. Next summer he can even start Special Olympics as he will be the right age.. but the question then becomes: Can I manage home schooling him? Can I handle the pressure and stress that does come with it, when he’s having a terrible day or a melt down as he’s becoming frustrated. Would he still enjoy learning as much as he does now? There are many questions and feelings I have about this. For one, I shouldn’t even have to consider home schooling him if the public education system would do what they should – educate. I am not saying all school systems are like that but I am feeling a bit frustrated when it comes to the special needs children. Lennon is in a regular 1st grade class and works on a kindergarten level – he knows he doesn’t know the same work as the other kids – he does understand some of what is going on. I have gotten some support in venturing into this but I just don’t know if this is the answer for Lennon. Maybe its just this year – maybe its just this teacher I don’t know..

I think however that my decision shouldn’t happen now – it should wait till after the surgery because I think I am already think he should be home (in a bubble again) after he is able to return home. I don’t think I will be trying to send him off to school as soon as possible – not that I really pushed it hard – but he loves other kids. Maybe I will only home school him for a year and then re-evaluate.. maybe..

This definitely requires some pondering, researching and finding the resources for home schooling special needs children, education for special needs children in any capacity for the public school system.. tho I will welcome your feedback… thanks for listening

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!

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.

to keep the family who will loose their own loved one, who will make the sacrifice to donate the organs so another shall live. Keep them in our hearts, send them our love and positive thoughts and love them for their human kindness.

Pray, chant or do whatever it is you do to keep the family filled with warmth and strength through their difficult time.

We will not know who they are but all families or individuals who participate in organ donation need to be lifted into our hearts… without them lives could not be saved.

Thank you!