Yesterday morning when I woke up I saw an email from a Nana on our family list for organic acidemias. Her little granddaughter was gravely ill with H1N1. Her brain had swollen to the point that they couldn't control it anymore, and were having to decide when to take her off of life support. She passed away yesterday evening at 6:00pm.
With each update throughout the day, I cried. I've never met this person, or her family. But I know her. I know she was the worried grandma, the one in charge of letting everyone know what was going on while her daughter and son were bedside dealing with the crisis of it all.
I know the mother was worried, praying with every part of her soul that her daughter would pull through.
I know the father was trying to hold it all together, and interact with the doctors in a sensible way, and also keep everyone updated.
And, I know the little girl. She was fighting. But in the end, the illness won. And now she is not suffering with a very rare disease. She had just turned 1 yr. old on November 3rd.
When the email came yesterday evening that she had passed away, I cried, because I knew. And when I told Steve, and he understood too. It could have been any of us. Any of our children.
So after the tears pass, and the extra smothering hugs of Max end, I give myself the sensible talk.
The talk that literally helps me to get up and keep going. The one where I tell myself that we can't fear life. That with life comes death. And although Max's life will likely end before ours, we must still live his life.
That we are as prepared as anyone could be for the flu, both seasonal and h1n1. We have medicine on hand. We have an emergency plan in place. We have doctors numbers to call at anytime day or night. We have oxygen and suctioning machines. We have humidifiers, and fever medicines stocked. We are stocked up on sick day feeding supplies, and extra metabolic medicines for when he is sick.
And sensibly I tell myself, we can only do what we can do. As I'm sure this family did. And in the end, when it is his time to leave us, we will have helped live his life to the fullest.
And after I give myself that talk...and I say give myself that talk, because I am talking out-loud. And Steve agrees with me along my pep-talk, but I am telling myself these things. So after I give myself the talk, I go smother Max with a few more hugs, and thank God for another day with him. And cry a few more tears for the parents going home without their child today. And decide once again, to live every moment to the fullest.
This made me cry! Hugzzzz!
Beautiful Deana, and so true. My heart breaks everytime I hear of a mito kiddo, a P2P family (or anyone) who has gone down this path we all fear. It's so hard being a part of this community and hearing the bad news that comes with it but it makes us appreciate the life we have even more.
You share excellent insight. I think that are lives in many ways are a lot alike.
We are very nervous for H1N1 here too.
Shachi, thank you. Sometimes a hug can heal a lot of hurts.
Heather, like you said, it has been a week spent on our knees. I have felt like I've had the wind knocked out of me a couple of times this week. But, yes, I have appreciated my Max so much through it all.
ParkerMama, thanks for visiting. I was wide awake in the middle of the night last night wondering what exactly it was that scared me so much, and why has it changed? Is this flu any more scary than the regular flu to him? Why has it gotten me so wound up? I don't have any answers...just still on my mind so much.
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