For good

Lately I cannot stop singing the song For Good from the musical Wicked. I’m either singing parts of it out loud or it plays over and over in my head. Love that song!

“I’ve heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don’t know if I believe that’s true
But I know I’m who I am today
Because I knew you…”

This is exactly how I feel. This journey has brought so many different people in our lives for various reasons. I’ve connected with strong, amazing mothers who have had to endure life’s greatest heartaches. I’ve met caring specialists who truly have our best interest at heart. I’ve met prayer warriors who consistently pray for our son even though they’ve never had interactions with him. I even had a complete stranger message me and ask if they could send our son a “box of sunshine.” Wow. There are so many outstanding people in our lives. Connecting. With us.

After thinking about this I thought about the what ifs. What if our son hadn’t been medically complicated? What if he didn’t have congenital disorder of glycosylation? No doubt it would be so wonderful not to have the daily struggles and worries….but I wouldn’t change it for the world. He’s making a difference. We’re making a difference. We are truly connecting with others and timagehat’s a feeling I can’t explain. Erasing the people who are making me who I am is something I wouldn’t want to do.

The part of the song that really gets me is “I know I’m who I am today because I knew you…”

He’s making me who I am. You’re making me who I am. I am learning what it’s like to truly live. I can only hope that when you reflect on your life there is a part in you that you can say….because I knew him….

 

 

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Expectations

We aren’t sure if our son will ever walk unassisted. We don’t know when and if he will say his first words. There is a harsh reality that comes with having a child who is affected by this rare disorder. I’ve learned not to have any expectations.

I live in the moment. I have to. I live in joyous moments and not defeating thoughts. I can’t live in the depressing reality that my son may never have the ability to care for himself, drive a car, or get married and have children. I celebrate every small achievement. I smile when I hear my son say a different consonant when he’s babbling. If I think of him never saying “mom” or “I love you” the tears immediately start. So, I stop thinking and I look at him.

He does say “I love you”….with his eyes and his touch. When he touches my face and looks at me he says everything he can’t. His smile says thank you, his eyes say you’re the best, his cry say hold me and his laugh says there’s nothing better than this. He does speak to me, just not in the way that you would expect.

So, no expectations. There was a time when here was where we wanted to be. Rolling over. Lifting his head on his tummy. Mouthing toys. Waving. YES!! Waving. So, we’ll set goals to get there and soon enough there will be here. It may take weeks, months, or even a year. I won’t expect it. We’ll just work, wait, celebrate. Work. Wait. Celebrate.

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