Please don’t take it for granted, and by it I mean a normal life.

I will say it again, please don’t take it for granted. As it is summer time I see a lot of posts about vacation or kids spending the night with family. I will say this I am happy for y’all but I am also a little jealous. We don’t get the opportunity to have family getaways or let Ella go spend time with family.

Last year we were invited to go on a week long vacation with my dad. Unfortunately we had to decline because we couldn’t take a nurse with us. We would’ve loved to gone but we wouldn’t have been able to enjoy our vacation we would’ve been sleep deprived.

Last night my brother in law was talking about having Ella having a slumber party at his place when he gets his own place with his fiance. Unfortunately that cant happen since she needs all her machines and it isn’t the easiest thing if you don’t know how to work them.

Our family loves the outdoors and we would love to take Ella to go camping under the stars. She would absolutely love it, but she needs her machines to sleep, and you don’t have electricity in the middle of nowhere.

Do Not Take This Wrong, Please

Please don’t get me wrong I WOULD NOT CHANGE ELLA FOR ANYTHING IN THIS WORLD!!! I just wish we could do things and take her places,is that wrong? I want to take her on a vacation at some point to who knows Disney or something like that. But we will probably have to wait till she gets older to go anywhere so that she understands she needs her machines. And maybe we will be able to lessen the load (have less machines, or at least more compact)