I am panicked today.
Peyton is doing better. The feeding tube is out. She is having fewer seizures (I’m actually afraid to type how few). She is starting to babble and even can imitate a few sounds. She is doing a tiny bit better. She is really really starting to hold her head up more and more. She has a long way to go but we are seeing baby steps of progress.
I am panicked. I am nervous. I am afraid to be optimistic!!! What is wrong with me??? I feel like if I get too hopeful that I am setting us up for heartbreak. I want so much for her. I am so afraid for her.
I need to relax. I need to take a breath. I need to enjoy her. I need to enjoy watching Ed and the kids enjoy her.
I am still afraid. I have a knot in my stomach when I think about the fewer seizures, the babbling, the head control. I am terrified. I want to just be happy and enjoy all these good things.
Fear sucks. So does the seizure monster.
I am working on the fear and I will always hate the seizure monster.
Next post will be nothing but positivity…..I promise and some cute pictures.
Followed a link from the ketogenic daily through @epilepsyMoms on twitter. I have just started the ketogenic diet with my little fella too. I can relate to that fear completely. I am so scared to be optimistic, but I can't help hoping and praying that this will be the answer xxx Good luck on your journey. I'll be interested to see how you get on. x
ReplyDeleteI think you should ROCK IT OUT and have a Par-tay!!!!!! And things may change and then they will get better again & you can have another Par-tay!!!! GO PEYTON!!!
ReplyDeleteI completely understand how you feel Heather. We've had a journey with Justin as well - very different - but from a parent's perspective we go through a lot of the same emotions. Know that there are still bumps in every road, but on days that are good - just reflect back on where you have come from so that you can really appreciate the road you have already traveled. And remember that today's victory doesn't guarantee tomorrow's, so just take it for what it is & roll around in it as much as you can. :) Other great days are ahead, as are other challenges. Each of them are there for their own purpose. God is there to bless you & your family through each one. Love you guys!
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