Snow Day

We had our first snowfall in Virginia yesterday and our first snow day today.  It is always difficult to be off our routine.  Waverly's time in school is a wonderful break and it allows me to spend some time one-on-one with Oliver.  We spent most of the morning at therapy appointments and watched some classic Waverly movies in the afternoon (Cinderella and Dumbo).  Matt had to work late tonight, so I was on my own all day.  He did, however, wake up early to de-ice the car for me.  (What a wonderful husband!)

We are still "recovering" from our appointment.  It was so beneficial to us, even though it is such a gigantic reminder that this disease is taking our kids away from us.


Penny said…
Shannon please, please listen to this song.
Anonymous said…
Hi Shannon. I learned of your family from a friend of yours. She introduced me to what you both were going threw. First, I am a mom of 3 children, one who is in Heaven. He died because of a medical accident, and was taken from us in the blink of an eye. I know its not easy to watch your children "die" in your eyes, but please be positive for them. You need to not dwell on what might happen in the future, but think about what you have now in your arms, no matter how small or little they can do. Be strong for them. I know there is no cure, or no way to stop from what seems to be -- but enjoy them while they are here, because once they go, you have plenty of time to be sad and worry for what they didn't have. I dont mean to sound rude, or thoughtless, because i surely am not trying to be so. Every Min you have with your children, is one more....and ever sunset, is one more. I would do anything for that one more now...Hang in there. I hope you and your whole family all the best. I will continue to pray for you and your family, and all that you deserve.
Much love--
Carol said…
I read your updates daily and am amazed by your strength. I found this link off a site that was linked from one of the people in your comment section. Just wanted to pass on something someone was trying. I'm sure you have done so much research that you are aware of this option, but couldn't take the chance and not pass it on.
Charity said…
Dear anonymous,
I'm am very sorry for your loss and what you and your family must have gone through and still must continue to go through.
However, I must respond to your comment to Shannon. I know you are trying to reach out, but I personally find your email a little hurtful (though I don't know how Shannon feels about it.)
Shannon DOES enjoy her children deeply. She DOES know to treasure the moments with them. She DOES know that she is blessed to have them while they are here.
However, she has every right to feel sadness while they are here. What is happening is a tragedy and she has every right to mourn. She need not wait til they are gone to be sad. This is NOT the way things are supposed to be. We are in a broken, fallen world right now and to try to "be strong" and act like what's happening isn't would not be right either. People always say to me, "God only gives us what we can handle." That is not true. No one can handle this. Only God can give us the grace and handle this for us. We are not strong. God is strong. We are weak.
Shannon is an amazing mother that feels both joy and sadness. She weeps and mourns and loves her kids deeply while treasuring them.
Continue to pray for her, we all need to.
But please give her room to grieve and be honest about where she is day to day.
Joanne said…
Hi Shannon,

I hope the sadness from this recent appointment continues to lift for you. I, like another commenter, hope that my posting a few days back didn't sound insensitive. Sometimes it's hard to convey certain sentiments through the typed word, and so I hope to not have suggested you would be losing a year to sadness due to the anticipation of the doctors suggestions.

Wishing you all a very healthy year! Joanne, Mom to Sasha (MPS IIIA)
Shannon said…
Hi Joanne-

I was not at all offended by your message. I understood what you were saying.

I think the blog can be difficult for all of us. I want to be able to say that life really sucks and I am sad today, while at the same time conveying that I truly enjoy every moment I have with the kids.

Thanks for checking in on my blog. I really appreciate it.

Joanne said…
Hi Shannon,

Just wanted to pop back in to thank you for your nice message. I feel a lot better knowing that what I wrote didn't come off the way I feared it had.

Just wanted to say too, that I really enjoy this blog. You are open an honest about the emotions that come with this diagnosis, and yet you convey so much joy and love for your children. This site is a comforting place to come to as well, to feel more understood with all that we MPS parents go through.

Thank you again for your kind note! Joanne (Momt to Sasha)

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