Reply to I feel like a $hitastic Mom after reading the Kelly Hampton blog. Am I the only one?

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Reply to "I feel like a $hitastic Mom after reading the Kelly Hampton blog. Am I the only one?"

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[quote=Anonymous]I have a daughter with the most severe form of Spina Bifida.  I don't have a blog, but spend a lot of time looking at other SB blogs.  The blogs of my online friends are very open about the heartache and challenges of SB.

I don't look at Kelly's blog often, but reading this thread made me realize that the reason that it doesn't draw me is that it just is applicable to my life.  Her baby (at least right now) "only" needs some extra therapy.   I think the difference between DS (for at least some kids) and SB is that SB almost universally requires two major surgeries, a NICU stay, PT weekly, cathing your child every few hours, medications, CTs/MRIs, shunt scares, decompression surgeries, etc etc.  There is just no way to gloss over having to take you child into the hospital for her third shunt revision in a month!   No lollipops and sunshine there, believe me!  (hitting head on keyboard!)

So, I admire her optimism.  I don't fault her for not dwelling on the negative because frankly right now, her little baby girl is healthy and developing.  (from what she has shared.)  If she was glossing over surgeries, etc, than I would think she wasn't being forthright.

Also, the times that have been most difficult for me dealing with my daughter's diagnosis have been when things have changed from the status quo.  When we first found out, of course.  When she got her shunt, when we started cathing, when she got her first wheelchair, when she is going through shunt failure, etc.   Otherwise, we just adjust, it becomes normal, and we move on with our lives.  Kelly may have only had one major shift for her family so far - the inital diagnosis.  From what it seems like, so far her little girl has done very well considering the challenges.[/quote]

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