Green
Waverly seems to be on the mend. Her appetite is still not back entirely, but it does seem to be slowly returning. Oliver is now sick with the same thing. He started antibiotics last night. Hopefully they will begin working soon - he was up most of the night. His T&A surgery is scheduled for next Tuesday, so we are awaiting confirmation that it will go on as planned. I do not want to have to wait yet another month.
This has been a difficult few days for me. (I don't think the sick, grumpy, sleep deprived kids has helped.) The changes in Waverly seem to come in waves and I feel like we have been hit by a big one. She has lost so much speech within the past few weeks. Even her singing has been affected. She doesn't complete the lyrics anymore, just an occasional word. And her clarity has gotten a lot worse. The only word I hear her say anymore is "mommy" and I am terrified for it to disappear.
I try very hard not to compare my experiences with those around me. I fight the jealousy impulse constantly. This week I have been overcome with envy. I wish with all of my heart that Waverly & Oliver were healthy. I have dual emotions at all time - thankfulness for my beautiful children and the incredible ways they impact the world, but also intense sorrow that they are slowly slipping from my arms.
Comments
ashleigh
I am a medical student. I remember learning about mucopolysaccharide accumulation disorders, but you have taught me so much more about Sanfilippo than I could ever learn from a textbook. I want to thank you for sharing your lives through this blog. Please know that it has touched my heart and that it will influence my practice.
But I must say, I've never met anyone as beautiful as you. I don't have a good picture of your face in my head, but through your blog, I see your heart regularly. Beautiful. Praying for you! And again, I'm so sorry you're having to go through this pain!
you've been on my heart a lot these past few days. thinking how different grief can look. mine was one of shock, yours is one that comes in piece by piece.
i am praying that you can extend yourself grace when you have those raw moments where envy, anger, doubt come over you.