Mucopolysaccharidosis is the name,
Accepting and living life with no shame.
A life with rare disease can be rough,
I strive to focus on the positives rather than the tough.
Helping others live their best lives is my desire,
So we can dream big and aspire.
#MightyPoets #MightyThoughts #Positivity #RareDisease #Thoughts #Mucopolysaccharidoses #Disability #Aspie #LivingOurBestLife #MakeLemonade
You are different than the baby girl I prayed for.
I wish I could do something. Anything. But instead, I sit here by your bed, watching you struggle to be comfortable, listening to your cry. The doctor told me yesterday that this could go on for years. What a horrible thought driven into my head. Years of this? I didn’t think I could handle even a few days after your diagnosis, yet here we are, 22 years of living with #Mucopolysaccharidoses. That word has been so many things in our lives. A disease. A curse. A joke. A prayer. A blessing.
You’ve never been able to logically understand a lot of what happens in this world. Yet you’ve made it a better place. I decided to start writing these letters to you because I don’t know what else to do. I’ve been told not to worry about writing right now, to focus on spending time with you, yet there is very little we can do together. We listen to music because you’ve always loved it. I’ll be honest; I don’t sing nearly as much as I did when you could sing too. And we still watch the Food Network. Food has always brought you joy. Me too. It’s interesting how life goes on, even when death hovers.
Yesterday was Halloween. Daddy and I went trick or treating with Samuel and Tessa. When you were four years old, you dressed as a neon clown. I can still see the rainbow wig bobbing back and forth as we walked through the neighborhood. You had such a cool way of shortening your thanks for the candy. Instead of saying “Thank you,” you always said, “Thank you welcome.” It seemed as if you purposefully shortened the conversation, giving so much thanks that you just took care of the “You’re welcome” too.
I am doing my best not to spend your last days on earth soaked in sorrow. While your body is weak and frail, wasting away, I want to remind you (and myself) of the good days. The joyful, beautiful days we’ve experienced together. Even some of the bad days we’ve had are beautiful. The tapestry of both has weaved a wonderful life and you’ve taught me so much.
I always dreamed of having a little girl and then you arrived. I thought I would be teaching you ABC’s and 123’s. I counted on showing you all the wonderful ways to live, just as my mama taught me. But we’ve lived a very different life. Instead of teaching you, God sent you to teach me. And I’m so grateful for you.
Good night, my sweet girl. As long as God gives breath, I’ll see you in the morning.
Your Mommy
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