Oh goodness, I am horrible. Sorry for the lack of updates. Life has been...well...crazy but in a good sort of way. I mean, I am a stay-at-home mom of three kids. One that is recovering extremely well from brain surgery. Another that is a keep-me-on-my-toes-sensory-seeking two year old. And a just turned four year old that is a highly demanding momma's girl. Between that and me having a hard time letting Sophie out of my sight, I have been physically and mentally exhausted. It's hard for me to even think beyond what is right in front of me.
But all of that has changed this week. At the end of the day today, it will mark Sophie's first full week back at school. Her energy level is there and so is my comfort level. I know I have said this before but she is just AMAZING. She really is. I am just in awe of her. She is one determined little (umm big...but it's hard for me to accept that she is getting so big) girl.
She remains seizure-free. There isn't a day (or night) that goes by that I am not incredibly grateful for that. A huge weight has been lifted from me. It's hard to even think about my emotional state of mind prior to surgery. Or, actually, prior to finding out that she was a surgical candidate (because the few weeks prior to surgery is a whole other story). I will never be able to find the words to express the heartbreak of having to hold my child every single night while she had a cluster of seizures. It was like clockwork. Usually around midnight and then again around 4am.
My heart still pounds a little faster when I hear her moving around in the middle of the night. Usually, she is just fishing for my hair. Once she finds it, she will fall right back to sleep. Yep...she sleeps with me. But I feel my comfort level growing there too. I think she is ready to sleep in her own bed again. She was a great sleeper until she was 18 months old. That was when the drop seizures started and she would wake up in the middle of the night with bloody lips (even with all the padding I put on her crib). So she started sleeping right smack dab in the middle of Brandon and me. And she stayed there until she was seizure-free after her first surgery (when she was 3.5 years old). Then back to her own bed she went until her seizures relapsed eleven months post-op.
But this time is different. It just has to be. I am once again filled with so much hope. Seizure-freedom seems so real. So permanent. Why not? Right? Miracles do happen.
9 comments:
Miracles do happen Elaine and these last few weeks have been a mini miracle of sorts. Sometimes it is hard to recognize a miracle when you are living slap bang in the middle of it. It is simply life those days. Instead, we are standing proverbially on the road to Damascus waiting for the light to hit us and the miracle to announce itself. You are living in the miracle. Yesterday was a miracle. Today is a miracle. And, although it is easier to say than to do this, let tomorrow's miracle take care of itself. I pray that you never have to know another seizure. I pray that you enjoy the seizure free days you have without worrying and waiting to see if another one will come. Hugs and love to you and all your family.
Elaine, This is such wonderful news!!! I hope and pray this miracle of seizure freedom is yours to proclaim forever more. I know it is absolutely amazing to have that weight and heartache lifted from your shoulders. Rejoicing with you here in NC! :)
I love the joy in her face......seems to match the joy in your heart. Can't wait to see all of you next month!!
Love, Barb
You are right. Miracles do happen. That truth is displayed through Sophie.
Sophie looks so wonderful in those pictures...I just want to grab her up and give her a big hug. I'll allow you to do that for me Elaine. I'm so glad that all is going well for you all again.
This post is just perfect...just what I was hoping to hear! She looks so good. And yes, miracles do happen.
This is amazing! I am so happy for Sophie, you and your entire family, beyond my words...
Love,
Rongrong
I think you are doing a great job with all you have to do and have gone through. I don't think I would have been as strong. Love you so much, Connie
Wonderful to read about the positive changes that are coming Sophie's (and your) way. One day it will include less exhaustion for you!
Hugs, prayers and cheers for you all!
Henry slept with us too, for the exact same reason. Now that he is seizure free I love to watch him sleep (in his own bed). He's so still. Still is good when you are sleeping. I'm so glad to hear that she is doing well. They truly are miracles!
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