I have photos of my daughters all over the house.
Over the years I have not been able to take out old photos to add newer, updated photos as I’ve noticed many families do.
I just keep buying more and more frames, when I see them on sale (or at Wal-Mart where they are always $4 and $5), and display more photos. I don’t know if the way I place them around the house is in acceptable decorator fashion. All of the frames are mismatched! I think some might say that my home is cluttered with too many photos. Oh I also have a message board upon which I just stick photos all over.
I just love to look at their faces, recall the memories, the feelings, the love of when they were babies, toddlers, pre-teens, holiday photos, their cute “little girl” clothes (when they let me dress them up). They will never ever be those little girls ever again. The photos always bring me peace and joy.
But something odd has happened in recent weeks, given Abby’s new and unpredictable medical condition. I look at these same photos that I have had up and around my house for years in a weird category now. I do not even do this on purpose, it is just this weird thought that now pops into my head when I look at these photos.
You cannot control your mind or control thoughts that come in and out at any given moment. And this is one thought that now pops in on a whim.
I look at Abby’s face and see her as a baby, toddler, pre-teen and she has no, real problems, fears or medical issues to be concerned with. I see photos and think my only worry then was if she’d catch another annoying cold or ear infection.
I also find myself now wondering when I look at these photos, did I miss something back then? Was she displaying any type of seizure activity back then, that I didn’t catch or recognize. Did I drop the ball? Was I not as good and attentive to her as I thought I was? Could I have done better for her?
Was there ever a night back then in those days when she had a seizure in her sleep and I didn’t hear her? The doctor says it’s possible. He also says not to dwell on such thoughts. Easy for him to say.
I am in a place I never thought I’d be. I have thoughts that I never thought I’d have. I could never imagine the fear for my child that I now live with.
A friend of mine has a friend whose daughter just died from cancer. She was young, I don’t think she was even 13 yet. My friend said that her friend, the girl’s mom, says the same things about her family photos. There are photos that are pre-cancer. This poor woman lost her daughter to the ugliness, the evil that is cancer. She never suspected when her daughter’s baby pictures were being taken, she’d one day look at them and feel such sadness and loss.
I’m trying not to write so much about Abby’s medical issues, but I have to admit it is hard. It is the only thing I think about. The only thing I seem to care about right now. And I don’t think it would be authentic for me to have a blog, ask you all to support me and ignore what is really in my heart at this time. I struggle whether it is right for me to share this part of our lives with you all. But, just know I am sharing these thoughts with Abby’s permission and my family’s support.
If I can ask you to take away one thing from these blogs about Abby’s seizures, it is to appreciate the small, predictable, manageable issues in life. Don’t sweat the small stuff!
I welcome your comments.
Until next time, love each other…..
I wish I could say it will all get better, or easier. Being a mother never stops. Love you!
Thank you Jayne. love you
I don’t know you personally, but when I get notifications of followers of Savanna’s Journey, I always check out who randomly decided to follow. My heart goes out for you and for your daughter. (Knowing that you are a respected journalist suddenly makes me want to hurry up and scrub the poor grammar and error from a recent import from Posterous!!) That endeavor has required me to reread all the posts in Savanna’s Journey. Despite the fact I lived the events and wrote the words, some emotions seemed so fresh and vivid in my mind.
Reading your story with your daughter gave me great pause tonight. Despite our battles have more differences than similarities, the emotions involved as a parent are strikingly similar. Watching your child suffer during an ordeal such as an unprovoked seizure, has to be one of the more difficult positions to find yourself. The mystery behind the science is vastly unknown, and worse yet, the stereotype of an epileptic is horrible socially. I stay at home and manage Savanna’s care and can fully sympathize with your feeling of lost freedom. This freedom that parents with typical children command, makes our situations so difficult to explain to people. Sometimes, I feel like I pour my heart and soul into post. I attempt to cover medical details with accuracy, not layman language. I try to articulate how things are in our life, with detail. And yet, I still get a call from a family member (who I know reads to the blog) and have to field the oddest questions. Until you live it, I don’t think it is possible to understand what it is like.
I am sure you hear this a lot as a journalist, but the blog posts about your situation with your daughter were very well written in my humble opinion and the emotion was expressed clearly with practical examples. Thank you for sharing how you felt as a parent being blindsided with pediatric epilepsy. I know the feeling. Our prayers are with you and your family.
Hi Ken, thank you for your note. Yes this new situation we are dealing with (started exactly one month ago today) is not fun! I don’t like it, it makes me angry! It is scary, unpredictable, unfair, just terrible. What seizures do to a child or an adult is so awful. I pray the medicine is going to help her. We are still in the “let’s try this and see if this works” stage. We have no family history, nothing to predict this would have happened to her. It is so nice to hear from a parent who knows exactly what I am going through, though it sounds like your daughter is going through so so so much more. I am so very sorry for you all. Please stay in touch and keep sharing your stories it really helps me to read the thoughts of another parent in this situation. Prayers to you and your family, Amanda