Wednesday, July 15, 2009


I hate them with a passion. They are scary and horrible and cruel. Megan has lost so much due to her seizure disorder it is not fair. She has stopped for the most part her drop seizures and now she is back to the big bad ones. I am talking lasting over 2 minutes, lips turning blue, body shaking, drooling, loss of body functions, and brain damage.
Megan had one just a bit ago, one last night, 3 Monday before last, one the Sunday before last, and one Saturday before last. That is 7 hard seizures within the last 12 days. Her body can not keep taking these nor can her brain.
There is nothing I can do when she has a seizure but be there besides her and reassure her. Make sure to keep her safe the best I can.
People ask me why I do not work outside the home. When I say Megan needs me no one understands what I mean. I am the one to give Megan her meds 3 times a day. I am the one here that does all her Dr. and dental appointments. I am the Mommy that she never had.
I am going to try and video her when she has a seizure so you can all understand how hard it is. Think of you child being at deaths door basically 24/7 and not knowing when your last day with them will be. Knowing that they fall at the drop of a hat, that they can not say if they hurt or where they hurt, that they can not say anything but hung, dawinnnk, daaad, red, on, blu. Oh and you have to know what they means by their few little words. Or when a big word pops back into their precious minds and they say it how you get so excited. How getting a hug and a kiss and the MMMMM mmmmm MMMMM sound means I love you can bring you to tears.


  1. why would you post pictures of her like that? that's a terrible thing for a mother to do..

  2. Who are you? Why would those pictures be a terrible thing to do? I see nothing wrong with the pictures at all. If you knew Megans story you would love the pictures. Oh well guess some *people* need to learn love kids of special needs. To bad you are so full of hate! Oh yea why not post your name and not hide behind anonymous?

  3. i'm sorry, i was referring to you talking about recording a seizure. how awful. all you want is for someone to pat you on the back and tell you how strong and brave you are for caring for megan. i agree, you are a good woman for doing it. but please, stop the theatrics. she's a child, not a way to get attention!

  4. It is amazing that you are to chicken to post your name still. Why is that I wonder.
    OK let me explain this in simple words so you will understand.
    Most people have never seen a seizure. Most people do not understand how dangerous a seizure is to the one having the seizure. Most people do not understand why I stay home to care for Megan even when she is at school.
    If Megan has a seizure at school I get called to come check her out or bring her home.
    As far as seeking attention for her seizures that is just sick. When I have been *patted on the back and told how strong and brave* I am it offends me. If I want attention I know how to get attention. I also do not hide behind a name and make snide comments.
    Oh and I have a parental support group that I write with and this was talked about. No one there thought it was wrong to post a video of her having a seizure. They felt it was a way to educate those that wondered what they are like. Until I met Megan I had never seen a seizure. I still am shocked at the different seizures and the severity of the seizures.
    So you can keep making your lame and snide comments to me but at least have the blass to post your name.

  5. I will post anonymous too. Because it's the comment that matters, not any preconceived ideas about the poster of the comment. I at first thought it was unfair to post such a tragic, private moment in a young girls struggle. And I still do, publically posted. If you meant it as educational, to parents facing similiar situations, it seems somewhat more appropriate. I'm not sure the general public NEEDS to see it. Curiosity will result in views. Possibly even people you don't LIKE, viewing. Then again, it's a free country. You can thankfully, do as you wish, and if viewers don't like it, they can refrain from visiting your page. Personally, I do understand why you stay home. You do not have an easy job, of mothering the children you mother. That you stay, that you find moments of joy through the struggle, is inspiring to me. Everyone has their own crosses to bear. Pretty much everyone else seems to blog about whatever stirs them. I think I personally, would be too involved in trying to connect to my child at that moment, in comfort, or protection, to manage a video, but there again, I've never been through it. It's good that you don't give up. It's good that you keep on being a mom. They both have difficult, special needs. Some people in this world are fortunate enough to NEVER experience raising a child with special needs. Some are fortunate enough TO experience raising a special needs child.

  6. Never does anything anyone does with special children always accepted or considered good or understood for that matter. I to have a special needs child. Life is never easy but the general public does always seem to find a way to critisize what you do, and given that most have never raised a special needs child, its funny how they feel the need to comment. Do I agree with posting a video of Megan having a seizure...well I to wonder if thats possible as I to would probably be helping her, but if someone else is videoing for educational reasons yes it would be good to educate people, cause I have seen someone have a seizure and the bystanders where less than supportive with comments of that person is possesed etc. And people need to learn a bit more about COMPASSION something this world seems to lack. Staying at home to raise kids, special or not, is still WORK its not fun to raise kids, its WORK, whats fun is the kids themselves, not the raising part. I have no FUN in spanking my kids or punishing them when they do things that are bad or dangerous, I have no FUN in spending precious time feeding a finikity eater or bathing a child fresh outta bed who would rather throw water at you then get ready for school. The fun comes in the love that you recieve from the child and that you give to the child. Parenthood is a responsibility and its difficult enough when your children are normal persay...much more difficult if your child is special...Daphne is not trying to gain attention through her postings, I understand again cause I have a child who is special, she is trying to educate those that feel that its ok to critisize having never walked a cm in her shoes let alone a whole mile. Its always easy to comment what we think someones motives are when we are sitting in our own world gazing only through a needles eye into the life of someone else. Its much more difficult to do that if you are given a more solid veiw of the life they live...and I for that I agree with her posting a video if she can. No mother is super human and its tough to have people say things that are less than supportive afterall we are all human.