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.


erin heiser said…
Oh, my dear friend. Your post just broke my heart. I wish I could throw my arms around you right now and cry with you. I hate Sanfilippo with all my heart. Wish I could do or say more than just that I am thinking of you, praying, hoping. I know it is not enough.
Anonymous said…
These are the things that test my faith.
ashleigh said…
i have been keeping up with your blog - it was shared with me by my college friend laura fabrycky. it often breaks my heart - how one family can endure so much pain i do not know and will never understand. i do not know where you stand spiritually but i wanted to let you know of a fabulous church in northern virginia that has an amazing ministry to special needs kids and their families. we have several friends whose kids have particular challenges and church is pretty much a no-go. but this church is known all around the country for its incredible ministry and a couple of my co-workers have been up there to their conference and witnessed it. anyway, the church is mcclean bible church. i don't know if it is close to where you live or not, but i thought i would pass on the info and maybe it could be of some encouragement to you and your family. in the meantime, you are continually in my thoughts and prayers.
Kim said…
Praying for you and your precious family. Thank you for your honest post; it brought tears. I wish there was something I could do.

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.
momma's heart said…
I am so sorry, Shannon! The envy must be terrible indeed. Your children are beautiful, yes. Very much so. Your header is my favorite blog header of all.

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!
I think anyone in your situation would have times of envy. Every parent wants to see their children grow up and be happy and healthy, yet because of this terrible disease you don't get to do that. I can only imagine that if I was in a similar situation, I'd be envious of other people, too. Waverly and Oliver are beautiful and all of us reading wish that there was some way to stop the progression of this terrible disease. Hugs to you, and prayers.
kelly said…
your honesty is refreshing...

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.

Popular Posts