Our daughter, Nadezhda, was diagnosed in May 2010 with Dravet Syndrome at age 3. It is a rare and severe form of epilepsy. This blog is for updates on our lives, our thoughts, and feelings. Everyone needs a voice, and here, ours may be heard.
Also, while epilepsy is often misunderstood, Dravet Syndrome is altogether unheard of. We would like to be informative about Dravet Syndrome and supportive for others dealing with similar circumstances.

Tuesday, March 01, 2011

On a Sort-of Related Topic

So on a somewhat related note to mortality, I have been thinking about cherishing my time with others, particularly Nadezhda.  I have read so many blogs from families with a child who has a disease.  So many of these blogs describe how they cherish every moment they have with their child because they don't know which moment will be their last with that child!  This is so beautiful and I want our lives to be like this too. However, I am not sure it is possible to constantly be this way.  I have decided one of three things must be happening:

1- these bloggers are really stretching the truth
2- they are only talking about the good times
3- SOMETHING MIGHT BE PROFOUNDLY WRONG WITH ME!!!!

So assuming #3 is right, please, you positive blogging moms who can cherish every moment, teach me how to do this cause I am telling you I get so ticked at my kid sometimes.  I love her 1 thousand million trillion billion infinity percents and I would do anything for her.  And I find many, many moments to cherish throughout the day, but dang it, sometimes I wanna scream!  So what's the deal?  How do I do it?  I am ready for my lesson in loving constantly and cherishing unceasingly!  please

How could anyone EVER be mad at this lil thing?

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4 comments:

  1. LulucarrotMarch 1, 2011 at 12:56 AM

    Girlfriend! Because behavior issues often come with Epilepsy. ADD, delayed development, sensory processing issues, etc. And, I bet that when a neurologically intact child does something wrong, the parents can assume they will grow out of it. Sometimes with our kids, we aren't so sure. So often when I am mad or ticked with Savannah it's really because I have panic and anxiety over that behavior ever going away. The road you walk unfortunately is a very hard one that only you and Curtis walk. It's great to set goals and try harder for patience but Heavenly Father knew what he was doing when he gave her to you. He knew how much patience you have and it is enough. Love you. Keep it real, it is hard and other mothers are probably feeling very relieved right now knowing you have the same struggles they do.

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  2. BeckyMarch 1, 2011 at 1:01 AM

    I think everyone feels that way about their kid sometimes. I always love them but I DO NOT always like them. My mother in-law told me she often went into her kids bedrooms at night to watch them sleep just so she could remember to like them.

    Love you.

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  3. Blaine & TessaMarch 1, 2011 at 4:38 PM

    Hey! I haven't seen you in forever and I just found this blog, from your original. I always check that old one and wonder how you life is going. Now I know and I love that. You are so great and so strong. I loved back in the day when we were able to hang out a lot and get to know each other. You are an amazing person, keep it up! I do have a question, and I hope it doesn't seem to foolish (I really did just find this blog today), who is Drake? Love ya, Tessa

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  4. Sophie's Story by ElaineMarch 7, 2011 at 2:07 PM

    Just hopped over here from Savannah's blog. I've only had a chance to read your first couple of post and just HAD to respond on this one. NO ONE cherishes every moment. Yes...there are moments to be cherished but not EVERY moment. I think people tend to just blog about the positives. Because it is sometimes hard to put your negative thoughts out there...in fear of being judged too harshly. So from the 2 posts of yours that I have read...you seem perfectly normal ;)

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