I’ve been treading water for the last month. June was fast and furious but we played a lot of baseball, spent a lot of afternoons at the water park, and worked hard in the garden! So when it was time for me to leave for 5 days to attend a conference on Duchenne Muscular Dystrophy in Orlando, I was very excited for a few days to myself.
First mistake. I was thinking about a conference on Duchenne (my worst nightmare) as a vacation. What? I don’t even know what I was thinking. I spent 3 full days talking about the hardest thing in my life; the very thing that threatens to steal my children from me. I also spoke some truths out loud there, that I had not had the courage to say at home. By saying it; a whole new set of realities were born for me. Realities that I was not ready to accept and that I am still struggling to fit into my world.
It was probably best to say it out loud and admit it to myself; because not two weeks later, my son is hurt, wearing a boot, and using his wheelchair daily. I’m worried about everything from getting a lift put into the van to how quickly he will heal to how many months or years he will be walking until he can’t anymore. And worse, is what I see on the outside, happening on the inside? How are his heart and lungs?
Heavy stuff. I’m not sure what my next move should be. I’ve simply surrendered to prayer. Admitting that I don’t know what is wrong with me, I don’t know what to do next. But the purpose of this blog is not to burden any of you with all of that, but to share with you how those prayers are going.
I’m still feeling overwhelmed, but I can not just stop living. We have kept up with our usual activities. I am still laughing and loving with my family for hours and hours of each day. It is just that there is this little something nagging at my heart, like little injections of sorrow and ache when I am least expecting it.
But this is what keeps happening…like little injections of hope and peace when I need them the most.
Last Sunday before Mass I prayed one of those surrendering prayers. An hour later I was making lunch and the babysitter showed up an entire hour early. I checked my text message to see if I told her wrong, but I didn’t. She came an hour early and I seized the opportunity to spend a quiet hour alone before my scheduled activity. I went walking through a department store and found a necklace that I would not normally have bought for myself, but it was part of a huge clearance sale and was only $9.99. It was a silver heart with a cross in the middle.
Then Monday night I spent an hour in perpetual adoration and let it all out and thought about all that was burdening my heart, weighing heavy on my soul. At the end of my hour, no one came to take my place, so I stayed for a second hour. That hour brought me peace I had been longing for.
And today, well I share a lot of our journey on our Facebook page for the boys. This week I had shared how my 10 year old fell at the end of a play he had a role in. He fell hard and hit his head, was bruised and upset. It was a bad night. The very next day, he went back to his play and did it all over again. He didn’t give up and give in.
I also shared how my 7 year old had hurt his foot, went in for an early morning x-ray before camp. He got the bad news, got a boot to wear for an indefinite about of time, and then went straight to camp with a go-getter, positive attitude. He didn’t give up or give in.
Someone who follows the page, stopped me this morning after dropping the kids off at camp. She told me that my boys are and should be an inspiration to all of us. With all they go through, she said, they never let it stop them.
She is so right, and gave me a message I so needed to hear. I get caught up mourning all the things I wanted for them and suffering because of all the things that they have to experience. But the thing is, they just keep on keeping on. They are happy and joyful and mine. I am blessed. And on top of that, God has given me a total of six great children and a husband I love to walk this path with.
God has kept me afloat always. But as of late, he keeps reminding me that he is there. Right now, when my cross is feeling especially heavy, he will not let me forget he has me. It is like footprints in the sand. When life is especially hard and you can’t go it alone, he picks you up and carries you.