This morning I read an article about David Cameron.  He is a politician in the UK whose 6 year-old son passed away yesterday.  When his son was diagnosed with his disabilities a few years ago, Cameron said it hit him "almost like mourning.  You're mourning the gap between your expectation and what has happened."  I thought that was so beautifully stated.

I had a meeting with Waverly's teacher and support team this morning.  All of the specialists shared their experience with Wavey and results from the developmental testing they administered with her.  Every time I hear the words she tested at a 0-6 month level or 6-12 month level, I just want to weep.  I know what they are saying it true, but those words are very powerful and they hurt.  I hate that my beautiful little girl is slipping away.  I do feel like everyone loves my little Wavey and they all talked about how smitten her classmates and teachers are with her.  Her greatest strength is how much she enjoys being around everyone.  I am so proud of her.


Anonymous said…
Dear Shannon,

I have been following your blog since your son's diagnosis when I followed a prayer request to your site. The situation with your children seems so tender and your time with them so short, I've been wondering if it's necessary to subject them to the public education system that is so fraught with judgment and the need for forward progress? I can imagine how painful it is to have the meetings for services and see the numbers rolling backwards instead of forwards. From my perspective it seems so unnecessary to add more suffering to an already unbearable situation. It sounds like Waverly enjoys school and you definitely need some time off, but is there not a less structured alternative that doesn't require an education plan and progress meetings that could serve both your needs? My heart wants your family to be able to be happy together during these days on Earth and not have to mark each loss along the way. I know these are my biases and I'm certainly not trying to impose them on you, but I see so much beauty in giving a dying person permission to slip away.

I hope you don't find my question intrusive and completely understand if it is not something you wish to address.

Peace be with you,

Laura said…
I definitely hope that the school system you are in is able to gracefully make adjustments for Waverly and Oliver. The great thing about our kids staying in school is that they are stimulated, exposed to other children and helped to maintain their skills. It is too bad that there is still the testing.
I have tried to think about Julie staying in school in the future, but it is too hard to predict. I know also that I need a break and she is in a far better situation in the school system than I could provide with health insurance and our limited resources.
If there were something else available for Julie besides the public school system, I would be interested to know what it is.
Later, our children will likely be in special schools for disabled children, but while they are able to enjoy their time with their peers I think they should go to the mainstream public schools.
Julie's teachers tell me that the other children in her class fight over who gets to hold her hand on the way to meet me after school. It is so sweet.

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