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.

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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


IEP’s and Evaluations make my heart ache

This last week has been a tough one when it comes to discussing Lennon’s progress and the lack there of – all at the same time.

Last week, we had his annual IEP meeting and discussed where he has made progress and yes there has been some. He’s done with physical therapy and he’s on consult with occupational therapy. He still receives speech therapy and will for now continue to receive those services.

The IEP team recommended Lennon for an alternative placement that does not partake in the SOL testing as it is commonly done in public school. Lennon has been using the VAAP (Virginia Alternative Assessment Program) instead and it is much better suited for him and his abilities.

This is where the heartache often comes up. I hope that Lennon continues to progress in academics but the hard reality is that this also may never be the case. As a rising 6th grader, he currently is working on a low 4th grade level. Which makes me relieved that he will not attend the regular middle school because (with the agreement of the IEP team and teachers) Lennon would struggle so much with the normal academic program and of course SOLs.

Socially he is making progress and he has some nice friends that he will have to part with, but Lennon being as easy going as he can be at times is totally relaxed in the fact that he will attend a different school. The highlight?

No homework!

Yea dodged the bullet on that one and since he won’t be home until 5 or so that suits me just fine as well.

Which made today a little harder.

You see, Social Security Disability is reviewing Lennon’s disability status. After being given permission to all of his information at the local hospital and his school, they still required additional psychological testing.

Lennon was as cool as a cucumber while my insides worried about the outcome, which of course can only go one of two ways. I can’t change or control it and this uncertainty is challenging.

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So now we wait on results from the evaluator …

April is Organ Donation Awareness Month

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King of the Rock

I am way over due for a blog post and an update on Lennon and so with it being Organ Donation Awareness months, I am tackling both at the same time. Win!

Lennon is making physical progress and even some cognitive progress. He’s still academically behind with his peers and well can’t often handle the classroom of 20 kids due to sensory overwhelm BUT he is managing.

He’s had a physical recently and he has gained his weight back since the pneumonia incident but hasn’t grown much. Nothing too concerning as he will probably grow more in a few years just like his brothers – and well I am not exactly tall and he’s 4 ft 9 in right now.

One of the things I admire is his perseverance. He huddles and muddles through most any obstacle even if he becomes emotionally overwhelmed. One of the things I am in awe in is his strong affection for me though it really resembles the affection need for a much younger child. He loves to be held or picked up and at 63 lbs – boy that gets heavy. He loves his cuddle time and just needs to feel secure most days.

He’s coming up for review to determine if he still qualifies for the label of being disabled. It brings me all kinds of concerns for the services he is currently receiving that would stop just like that. In addition to his medical management that I cannot handle on my current income – life is challenging enough. I don’t know what will happen but we will cross that bridge when we get there.

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He was quite done walking

In the mean time, we enjoyed a hike to a waterfall on Skyline Drive – his idea! He loved it until we had to go back, and while he whined he did successfully return to the car and was super excited about the ice cream on our way home. His legs are still not strong as most and I told him we will walk more frequently – he is not a fan. However knowing him, it’ll be fine because we’ll have loads of fun 😉