Coming up on a year...what was keeping us going? What was keeping Michael going? He was still having massive sz's. In early May there were a few days that he had almost 100 sz's per day. All we could do was watch, wait, hope, and pray.
It was probably our lowest moment...
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You'll want her autograph, trust me!
Poor little guy!
My hero!!
Listen to this playlist: jeneecummings's Playlist
My Precious Joy
Sweet Father in Heaven whose love is divine,
Thank-you so much for the son that is mine.
To others he'd be a burden to bear,
But to me he's a joy to which none can compare.
I know that he's different from most girls and boys,
He speaks kind of funny and plays strange with his toys.
For him, change is hard, he can get so upset,
He must seem so odd to those he has met.
Sometimes his anger gets out of control
And he has a huge meltdown which torments my soul.
Yet as I look into those precious blue eyes,
I know that you Lord gave me this surprise!
For life doesn't always turn out like we hope,
You know what is best, and it's through you I cope.
You help me to see as others do stare
That this is My precious boy, not a burden to bear.
Although he is different than some other kid,
I'm so glad that you did what you did.
When others comment "I don't know how you do it!"
It feels as arrows in my shoulder they have hit.
How could they not see what I see?
I just can't believe they don't envy me!
And then it occurs as if from above,
You knew that I was the one for this love.
You knew I'd rejoice in his triumphs through small they might be,
And urge him to greatness despite what they see.
I'd find joy and laughter where there could be tears,
I'd see his limits and proceed without fears.
You knew I'd be best for this special boy,
So, thank you Dear Lord, for my precious joy.
Sweet Father in Heaven whose love is divine,
Thank-you so much for the son that is mine.
To others he'd be a burden to bear,
But to me he's a joy to which none can compare.
I know that he's different from most girls and boys,
He speaks kind of funny and plays strange with his toys.
For him, change is hard, he can get so upset,
He must seem so odd to those he has met.
Sometimes his anger gets out of control
And he has a huge meltdown which torments my soul.
Yet as I look into those precious blue eyes,
I know that you Lord gave me this surprise!
For life doesn't always turn out like we hope,
You know what is best, and it's through you I cope.
You help me to see as others do stare
That this is My precious boy, not a burden to bear.
Although he is different than some other kid,
I'm so glad that you did what you did.
When others comment "I don't know how you do it!"
It feels as arrows in my shoulder they have hit.
How could they not see what I see?
I just can't believe they don't envy me!
And then it occurs as if from above,
You knew that I was the one for this love.
You knew I'd rejoice in his triumphs through small they might be,
And urge him to greatness despite what they see.
I'd find joy and laughter where there could be tears,
I'd see his limits and proceed without fears.
You knew I'd be best for this special boy,
So, thank you Dear Lord, for my precious joy.
My little golfer
You'll want her autograph, trust me!
Dad and daughter!
Slugger!
Brothers
Buddies
First injury
Poor little guy!
EEG-May 2010
My hero!!
Epilepsy Websites
- http://www.doosesyndrome.com/
- http://www.epilepsycolorado.org/
- http://www.charliefoundation.org/
- http://www.naec-epilepsy.org/default.htm
- http://www.epilepsy.com
- http://www.cureepilepsy.org/
- http://www.epilepsyoutreach.org/
- http://epilepsyfoundation.org
Our Family
This is Michael's story
June 17th, 2008 was the day that changed the rest of our lives. On June 18th, 2008 our precious son Michael was diagnosed with a rare form of epilepsy called Doose Syndrome or MAE (Myoclonic Astatic Epilepsy.) Please see our blog on June 2008 for our story.
June 17th, 2008 was the day that changed the rest of our lives. On June 18th, 2008 our precious son Michael was diagnosed with a rare form of epilepsy called Doose Syndrome or MAE (Myoclonic Astatic Epilepsy.) Please see our blog on June 2008 for our story.
All about epilepsy
Myoclonic-Astatic Epilepsy (MAE), or Doose Syndrome, is an epilepsy syndrome of early childhood that is often resistant to medication. For this reason, it can be difficult to treat. MAE is an idiopathic generalized epilepsy, meaning that there is no known cause for the seizures (idiopathic) and the seizures originate from all over the brain (generalized) as opposed to coming from one focal area. Onset of MAE occurs commonly in the first five years of life, with the mean age being three. Statistics show that it usually affects children who have previously developed normally, and boys are twice as likely as girls to develop MAE. In some cases, other family members (immediate or extended) may also have seizures.
Myoclonic-Astatic Epilepsy (MAE) was first described and identified in the late 1960s by Herman Doose as an epilepsy syndrome, hence its original label, Doose Syndrome. The generalized seizure types seen in this syndrome vary, but many of the afflicted children can experience large numbers of seizures daily, part of what makes this condition so difficult to manage. As with most medical disorders, the spectrum of severity seen in MAE ranges from mild to those more severely affected. Children mildly affected by MAE may have their seizures quickly and easily controlled with first-line medications, alone or in combinations. Those children on the more severe end of the MAE spectrum may have difficulty finding an effective medication or treatment. As more is learned about MAE and new treatment options emerge, the outcomes continue to improve for our children. ¨
Myoclonic-Astatic Epilepsy (MAE), or Doose Syndrome, is an epilepsy syndrome of early childhood that is often resistant to medication. For this reason, it can be difficult to treat. MAE is an idiopathic generalized epilepsy, meaning that there is no known cause for the seizures (idiopathic) and the seizures originate from all over the brain (generalized) as opposed to coming from one focal area. Onset of MAE occurs commonly in the first five years of life, with the mean age being three. Statistics show that it usually affects children who have previously developed normally, and boys are twice as likely as girls to develop MAE. In some cases, other family members (immediate or extended) may also have seizures.
Myoclonic-Astatic Epilepsy (MAE) was first described and identified in the late 1960s by Herman Doose as an epilepsy syndrome, hence its original label, Doose Syndrome. The generalized seizure types seen in this syndrome vary, but many of the afflicted children can experience large numbers of seizures daily, part of what makes this condition so difficult to manage. As with most medical disorders, the spectrum of severity seen in MAE ranges from mild to those more severely affected. Children mildly affected by MAE may have their seizures quickly and easily controlled with first-line medications, alone or in combinations. Those children on the more severe end of the MAE spectrum may have difficulty finding an effective medication or treatment. As more is learned about MAE and new treatment options emerge, the outcomes continue to improve for our children. ¨
About Me
- jeneecummings
- I married the love of my life on October, 24th 1998. We had our first child Briana on February 6th 1998, Michael March 12, 2002 and Landen May 1st, 2008. I stay home with my 3 children and raise them to the best of my ability. I spend my "free" time sharing our story and spreading the word about Epilepsy.
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