Baby Steps

Tuesday, September 3, 2013

Waiting

Waiting.... My least favorite thing to do. After the past two years you would think I have mastered patience. If anything, I think I have become more impatient then when this all started. We are always waiting on something. It becomes an internal struggle because we want the time to pass quickly to get to what we are waiting for but as time passes Piper seems to be stuck in the same place. The cliche thing you hear from parents, "they grow up so fast". They do, but for us she is growing bigger but basically still the same child as we saw at 6months when it comes to physical, cognitive and emotional aspects. It's a very disheartening thing to watch. It's like the world around you is going full speed but you are stuck in time. It makes it much harder to see children her age and what she is not able to do. I try not to think this way but I'm only human. 

As most of you who have been following us (we thank you) know; Piper, my dad and I moved to Denver at the beginning of August. After numerous failures with seizure medication we chose to try cannabis therapy. Picking up and leaving everything you know does not sound easy but surprisingly it has not been that bad. We are adjusting well and are ready to try this new treatment. She is legal to start treatment when the product is available. We knew there would be waiting involved and were not surprised. It's much harder waiting here knowing that very close to us could be the thing that finally helps her. We are on the waiting list with the group that treats pediatric patients and if things go well we may be able to start in October. (Prayers please!)  

Another hurdle for Justin and I is being away from each other. We haven't seen Justin in 2 weeks and he won't be visiting again for 5 more weeks. This is an enormous challenge for both of us. We are very close and not being able to talk about things and make decisions together is very hard. I know he misses Piper very much and hates to hear of her recent rough days. Justin's easy going personality and jokes always help change the mood on the really bad days. We could use some of that right now. He also hasn't felt Evan kick yet, which I get to feel all day.I know it must be killing him to miss out on so much. It takes an emotional toll on your heart but we are both trying to stay strong for Piper. We made this choice and knew it would be hard. He will be visiting in October and back to traveling until thanksgiving. Hopefully, he will be able to move out here by then. I am counting down the days. 

I know you are just as eager as we are to see if this treatment works. I will do my best to keep everyone updated!