Five years ago today, we received a phone call with news that changed our lives forever. Jenelle's neurologist called with results from her EEG indicating she had Infantile Spasms.
They say that time heals all wounds, and in some instances that has been true for us. Each year, this anniversary gets easier to pass for me, but this year is a little more difficult as I have been watching another child start a similar journey. I know the difficult road they have ahead and am thankful to have that part of the journey behind us.
When we got the news about Jenelle, I was relieved and a bit devastated. I was relieved that we finally had a name for what was going on, but devastated at what I read about her condition. Every parent hopes the best for their child and that is all we ever wanted for Jenelle. Part of me wishes I could go back in time to tell myself 5 years ago that it would be a difficult journey, but it would be OK. Jenelle is not perfect, and she is not seizure free, but she is healthy and she is OK. I realize now, once we controlled the seizures, Jenelle made more progress. I don't think we could have done anything differently, except maybe get her to be followed by the best expert in the country sooner than we did.
I watch videos of that first 24 hour EEG and can see so clearly now the seizures I missed all that time. I'll be honest in admitting that even with the EEG confirmation that Jenelle was having seizures, it took many months for me to begin to actually recognize what they looked like in person. I consider them subtle, silent thieves of my daughter's most precious moments during her development. To think of seizures being anything less than monstrous is an understatement.
Even with the good times we are enjoying now with her seizure control, it scares me to know that at any moment, without any warning, those seizures can rear their ugly head and take more away from our Jenelle. That fear does not stop me from enjoying the present, but it does help me remember to stay grounded and realistic.
If I had known 5 years ago what I know today, would the journey have been any easier? Probably not. But from our experience, I appreciate the hard times and rejoice in all that we've accomplished. Jenelle has more to prove to us all, and I am so proud for all she has taught me.
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3 comments:
It's amazing how this post hit home with me. I too wish I could go back almost nine years and talk to that father of Ben just to tell him everything is gonna be okay. In fact you will receive much more from this child than you will ever lose.
You are a very brave woman, and continue to inspire us with your courage.
Hi,
I was truely inspired by your blog for your daughter my son has a whole lot going on there still not sure what it exactually is so i am alawys looking for anything that may help the doctors to figure out my little man. I was wondering if
you could help me set up a blog like you have for your daughter. I was trying but not real sure how or what to really post.
Here's the site and what i have had time to do so far. http:// .blogspot.com
Thank You in Advance
Nikki Gratton
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