Friday, December 12, 2014

A Mighty Heart

What does it mean to be mighty? It could be an adjective meaning having or being characterized as having superior power or strength. This definition fits Kreed. I've never met anyone stronger. The trials he faces on a daily basis I could never imagine and yet he can still face it with a smile like this: 
Or being mighty can mean of great size. Why then they must be referring to Kreed's mighty heart that beats strong in his chest (well and a little fast thanks to dysautonomia). Or maybe you mean it as an adverb- to a great degree, extremely. Well that is surely Kreed because he is a mighty courageous boy. 

Kreed is mighty in every sense of the word. These days Kreed smiles like this:
It amazes me. He has daily and constant pain due to his nerve damage, headaches, seizures, the bazillion times I have to stick him in the finger to take his blood sugar, the blood pooling in his legs etc etc. He has frequent drops in his blood sugar and he can't tell me when it happens; he can only show me in his behavior. 

Then let's not forget he's lived his whole life since he was three and a half not being able to speak or move his body how he wants. Can you imagine? You have to just exist and do what other people say and want you to do. Without a voice. Without a choice. Except to have behaviors to refuse choices. Then be labeled "non-compliant" because you have no voice. What a cruel joke. They just didn't realize how mighty Kreed was. 

Today Kreed uses his mighty voice as seen here when he let's us know just how it is:
We are lucky Kreed has found his voice with his Dynavox and I can't imagine if he had to continue to go this long without a voice. At the same time I can't believe we are able to have some conversations now. It's been a long and mighty road to get to here. Kreed has astounded me with his ability to adapt. He adapted when he didn't have a voice and he continues to adapt now that he has one. As Kreed continues to face incredible medical odds, I am always proud at how mighty he is in every way. He also loves. Mightily. And forgives. We can have a bad moment but in the next moment, he can be all kisses and moving on from there. He has taught me to live in the present and it's changed our life incredibly. We don't stay in anger or sadness. We live moment to moment and work on teaching him to communicate and live a better life. 

Our life is about making Kreed's life  happy. It's such a rocky and heart breaking road in so many ways. It's my privilege in life to raise Kreed and show the world what is possible when it seems everything is impossible. To show what a mighty heart our children have and how much they have to teach us. Which I guarantee is far more than we have to teach them. I'll say it again- Kreed has made me a far better person than I ever would have been. Period.

And when Kreed let us know that his body felt better and more free in a different city, we rose up and did the mighty thing and moved for him. He went from this:
To this:
And now he continues to amaze us with his strength and courage as he faces so many difficult medical issues. He faces hypothyroidism, epilepsy, an immune deficiency (CVID), metabolic disorder (SCAD), adrenal insufficiency, peripheral neuropathy, sleep apnea, POTS/dysautonomia, hyperinsulinism and possible mitochondrial disease with the mightiest heart I have ever seen. While he suffers so much, he also loves so much and enjoys his life on a much deeper level than you or I will ever know.
So when you think of the mighty- it is our kids who have to face so much and often do it with smiles like these: 
Every part of their life is Mighty. From their heart to their strength to their courage to their kindness to their innocence to their smiles in the face of so much adversity.