A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. — Christopher Reeve

 Some days I don’t know how I manage. Today was one of those days. What I often don’t write about is the cognitive disability that has impacted Lennon’s life…his impulsiveness, inability to focus and/or listen, inability to assess the safety and risky situation and the lack of maturity for a 7-year-old. 

When you are with Lennon you have to be “on” all the time, especially when he is awake because you just don’t know what he may do next. I foster/encourage his independence but that comes at a price when he can’t assess situations accurately and they become unsafe.

Lennon LOVES freezer pops, he LOVES to get them himself. He will even come to me with freezer pop in one hand and ..ugh.. scissors in the other hand. There are times he “runs” because he becomes TOO excited. There are times he climbs on the chair because he is MR. INDEPENDENT.

It is hard keeping him safe and encouraging him to do things for himself. It is hard not to sound like Marlin ~ Nemo’s dad who says: You think you can do these things, but you just can’t. How many times that sentence goes through my head I won’t mention, but it’s there. And then I push them aside because he can do these things because I encourage him to do these things. 

Last night he unhooked his feeding tube, aside from the fact I now need to clean formula stains, Lennon with his action indicated he is tired of the feeding tube. I know this, he tells me all the time he wants to start eating and I gently remind him that until he does he will have to have the tube.

Its a struggle because I can see he wants to be “normal” like the other kids in school while at the same time having to be restricted from foods (protein) and that there isn’t enough food that I could offer that would satisfy him.. let alone that he would try them.

Tonight he spat one of his pills out ~ time to crush them and give them through the tube! 

It’s not always like this. Lennon loves to share his love… he loves to show attention (especially to me) by sitting in the lab or laying on the couch with someone. But then he struggles with transition and understanding and (unintentionally) disrespecting … Lennon wants what he wants because he focuses on one thing so much that it’s hard for him to transition to something else.. and then I remember the affection he’s giving me… the unconditional love that he has and so freely shares with everyone. 

When I remember his affection – every time he acts out has the inability to focus or transition – I embrace it. I disregard how stressful my moment, my minute or my day has been. Because in the end, he is simply living in this world the best way he knows how – unconditionally.

And yet it doesn’t take away the stress and the frustration and the tiredness I feel by the time the day is over, knowing I will have to do it all over again tomorrow. And again, I look forward to every morning, because I know that during the day we will spend special loving moments together – hugging, cuddling on the couch, even if only for a minute. 

I was looking for something tonight for inner strength and I came across the quote from Christopher Reeve. It lifted me and its own right made me acknowledge myself and the person I am in Lennon’s life. 

Good Night!


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  1. I hope the call comes soon so you can all move on to something even better…. almost normal.

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