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. 

Wednesday, December 10, 2014


Originally published on The Mighty: 

People have asked me what I’m thankful for and to even write about it. I’ve seen a lot of bloggers write about therapists or family members or even friends of their kids. But me? I’m thankful for Kreed.

He changed my life the moment he came into it. Little things ceased to matter and my whole world became about making his life better. It became about helping him find meaning in his own life, but at the same time, giving my life so much more meaning. He’s taught me about true struggle and true perseverance with his ability to smile and continue on his days, even when he’s in immense pain. Or we might have a yelling match, but he’ll still instantly cuddle with me because he understands unconditional love on a level far higher than any of us will ever understand. He understands the true meaning of love and that words or actions in hard moments have zero bearing on the actual love between two people.

Kreed taught me about what’s truly important in life. He’s taught me that it’s people who make the difference — not things. Kreed may like something or somewhere, but in the end it’s the people who make it all special for him.

I thank him for making me a better person. How many people can say that? He makes me want to be better, to work harder so he can have a life that’s easier for him or a life he wants. Because he has to work so much harder every day than I will ever have to. So he’s taught me to appreciate what I can do so much more and what I don’t have to face.

photo (16)
Our life is all about Kreed, but in living a life about him, he’s made me a far better person than I could have ever hoped to be. I’m kinder, more patient and I’m stronger and more courageous because I have to fight for his life too. I’ve learned to persevere and overcome whatever the world puts in front of us. I’m stubborn, and I never give up because it’s not just my life I’m fighting for but his too. I have a greater level of sympathy and empathy that I would have never possessed otherwise. I’ve learned to live in the moment and not have anxiety about the past or future because it’s impossible to do so when you are with someone 24/7 that lives and breathes only in the present. I can’t change the past and I don’t have a clue of what will come next, but I can breathe in the present, and set ourselves up for a better future.

Is our life hard? Yes — much more so than an average person’s life with a typical child. I’m never without Kreed except for brief moments of time and that’s how it will be for the rest of our lives. But knowing this has helped me push Kreed harder to learn to communicate more and be in public and interact with others so he can always go anywhere with me. I can’t do so many things other families are able to, but that’s OK, because it’s the people that matter and not the stuff I do or don’t get to do.

Kreed has taught me I can be bitter about our life and live in anger and sadness or I can accept the life we have and make it the best possible life with what we’ve got. I can choose to find the joy and happiness in our moments and let go of the anger and sadness. Our life has been so much happier as a result.

So when people ask me what I’m thankful for… it’s Kreed. Always has been and always will be. I would not be the person I am today without him and I certainly wouldn’t be this better version of myself. Kreed made me a better person. Period. Many people say Kreed owes his life to me, but what so many other people don’t realize is that I owe my life to him.