Much of life consists of every day ordinary things. Work and school, Hiles family Friday fun night, church on Sundays rinse and repeat. Our family is probably not too different from yours other than the fact we have a special needs child. Having Addie has altered our life in many ways beginning with meal times especially breakfast and dinner as the sole measure of the success of the meal is not measured on how it tastes but rather if Liz and I were successful in getting Addie’s meds in her. Some days that’s extremely tough and draining and meals can go on for two hours as we empty our pantry trying different things to get her to eat. Our house is pretty loud these days too. With 4 girls there is lots of activity. Our 9 and soon to be 7 year old play and fight as most sisters do and our 15 month old is busy tottering around the house and getting into everything! Addie does pretty well but we do have to be careful of sudden loud noises as she has startle seizures which cause her to completely collapse to the ground. We also have to watch out for the baby fussing and crying as Addie struggles with emotion and if it goes for too long she becomes sad or irritated and it takes awhile to calm her down. Another aspect of Addie’s life is her bed time. She’s usually out by 6:30 and definitely down for the count by 7pm as her medicines cause sleepiness and her early wake up time 2:30 am (seizures) and then again by 4-4:30am for the start of her day is certainly contributes to that bed time. Most days she likes to be cuddled to go to sleep but there are certainly signs of her growing up as sporadically she’ll fall asleep without the cuddles and even one time she fell asleep in her bed on her own. A bittersweet moment for sure.

In all of this craziness and emotion, there is a sense of beauty to it. Knowing that it won’t last forever and we’ll probably miss it but also kind of wishing that time might speed up so that life could possibly slow down.

As I think about that though, I am thinking of the old line of, “Be careful what you wish for…” because “when time marches on”, I’m sure that these days will be missed….

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