100th post

Do you ever feel like life is more than you imagined?

Do you ever feel like life is more than you can handle?

We all feel like that somedays. I've found that having a child with medically complex issues amplifies those feelings a million times over!

On Saturday, Stevie, the boys, Zeta and I were able to get out for the Edisto Road Race and Learning through Loggerheads Festival. Like all of you, I've been to plenty of little festivals and attractions. They're fun. You see stuff, eat stuff, laugh and have a good time. Then it's over and you don't ever really think a whole lot more about it.

Well, for me the LtL festival was more than I could have imagined. I don't know, maybe it felt like we were getting a step closer to a 'normal' life or something. I mean, we did Disney recently, but to me that kind of felt like a 'make-a-wish' trip or something - you know it was a huge ordeal and worth every minute, but I kept focusing on the fact of all it took to get there and that all 5 of us may never get the opportunity to do it again, etc., etc. Edisto was much different. We were all out and doing something that a 'normal' family does. Granted, we may have looked a little less than normal. We got some stares - I mean imagine a huge black stroller packed with medical equipment and the cutest little baby girl you've ever seen - wearing her bling on her shirt with her green and pink sequined poodle pocketbook to boot.....AND the most handsome redneck and artsy intellectual boys, along with the cutest little puppy.....yes, we were quite the marvel. It seemed like everywhere we walked we had a crowd gather around us to ooh and ahh (in a good way). We got a lot of - "you sure have your hands full". To me, I took it as if God sent the welcome wagon to greet us back into the real world LOL! It felt like the 5 of us were our own little parade. The first few minutes were a little intimidating, but after a few people coming up to pet Lil' Jon (the dog) or ask about Zeta it became easier. In fact, it became kind of natural and I just relished in the fact that we were out - doing this typical family activity - ALL together. I soaked in every sight and every sound. Just the feeling of being together, enjoying the moment, enjoying each other - I just can't describe it! The feeling of hoping that we're getting closer to being able to do things like this on a regular basis - that's a feeling that can't be articulated.......a feeling of so much hope and wonder! A feeling I won't soon forget! Remember how you used to feel, as a kid, the anticipation of all the wonderful things you would get for Christmas? Now, take that feeling and multiply it times a thousand and you still don't understand the depth of how my soul feels about the day I got to spend with my family on Saturday!

Fast forward to today.

Zeta is asleep, but her monitor indicates that something still is not right. I sit and try to distract myself with cleaning, computer, and sleep that just will not come. I fluctuate between distraction, anticipation, tears and desperation as I wait for her to awake. The seizures increased a lot yesterday. She looked pretty bad last night. This morning I dare not make her stir - even to change her diaper- for fear of what might happen. As long as she is sleeping she is stable. Even if her vitals indicate that something might be a little off, at least she is not seizing. At least her breathing is even. At least it all seems controllable. What a horrible, helpless feeling. A feeling that at any minute it could.........well..........I refuse to let my mind go there. Sadness and a loss of control that is magnified by extreme fear....by the guilt of thinking that maybe our 'typical' day played a role in this terrible day.....the thoughts won't stop. I can distract myself with mundane tasks, right now I'm pretty sure I can even still put on a face to make you believe that everything is just fine..........BUT in my mind that feeling doesn't leave - the why and the what-if.........those are the feelings that I have to purposefully and very deliberately hand over to God. I don't know what to do with those feelings. They are not productive at all. They help nothing. They solve nothing, this I know.

I know I can't hold onto fear and doubt. I know that holding onto feelings like the ones I have about Saturday are what I need to keep in my heart. I know there is a plan and a purpose. I believe that.

Please continue to pray for our family. Even when things seem to be going well. We all need prayer.

I also have an unspoken, health prayer request.

To me, in this moment - I am overwhelmed and just can't figure how things could be any harder (but I KNOW that they certainly can). Pray for me to keep it together. I know that this moment seems unsurmountable (if that is even a word), but I have faith and trust that it too shall soon pass.......