Good Days, Bittersweet Memories

Macayla has had a good couple of days. She has had pretty good bladder function, not perfect, but good. She has less secretions and even went to school today. She is worn out it appears, but fairly happy. Hopefully, the next few days will at least stay in this trend. She gets to see her GI doctor and nutritionist tomorrow for a check-up. Hopefully we won't add any calories to Macayla's diet. She is already a heavy load to lift.

Jacob has been adjusting back to school. He seems to be back in the swing except he is tired when he comes home. He apparently devotes a lot of energy to focusing at school and when he gets home he cannot stay focused on much. The teachers tell us he is a great student, so he is only this way at home. He got to go play at the park today after school and I think it helped him let go a bit.

I have been scrubbing through some old home videos I shot back in 2005. We got the camera then to try and video a seizure for the doctors. If there was a market for documentaries on Macayla's seizures, I'd have it cornered. It seems that my camera is always looking for a seizure. Anyway, we played the first tape back on Macayla's television so she could hear it. She really listened and laughed appropriately. We forgot so many things. We forgot that Jacob (2 years old at the time) could not say Macayla's name so he called her "La la". We forgot how Macayla would act out her falling spells. She would say, "Whoa, whoa, whoa..." and sway from side to side. She loved to wear her ballerina outfit and run around in it. Jacob loved to kiss everyone then just like he does now. I have shots of Macayla looking back at me in the rearview mirror and laughing. The beach, the lake, birthdays, horses, cats, dogs, flowers, butterflies, Disney World, tea parties,... at this point it seems impossible to edit any of it. Unfortunately, they don't make DVD's hold that much video. So, I will have to edit.

 But we will always have the tapes and the memories. My favorite memory I saw multiple times on one tape was Macayla looking at the camera, sometimes up close and other times at a distance, and calling, "Daddy!" That will not be edited at all.