Pardon me, but step aside whilst I vent...Since my darling daughter has been born, I had to step in a be a full time nurse. (no offense to you "schooled" nurses) but yes, I was and still function in that role. The ONLY difference is my shift didn't ever end after 8-12 hours. I remember crying because I thought she would never know I was her mom because I was pushing meds, giving breathing treatments, changing trachs and gtubes, dumping feeds, cleaning vomit, changing linens...forget being able to cuddle or love on her...there were too many machines and tubes in the way for that...oh and let's not forget machine maintenance and upkeep. Waiting for hours in waiting rooms for countless appointments only to be let know up front if you were ever 10 minutes late you would be rescheduled. Countless hours in surgery waiting rooms.
Oh yes, and an administrator/insurance person. Can't even count the number of phone calls and appointments just to get insurance needs met. Then we had therapy coming in...so add to that all the fun exercises, stretches, and "tortures" I'm needed to add into our already unending day of demands...but hey, I don't work outside the home so what else could I possibly have to do? Oh wait...endure the endless crying of your tiny baby ON therapy days because even though it's painful and hard work you know it's for the best. *insert hooking myself to a milking machine every three hours of the day because it's the only way I feel like I'm being a good mother*
How about depending on "professionals" to be guiding you in the right direction...no matter what you think maybe right and getting years down the road to find you really were and you feel like you just didn't fight hard enough.
I still do most of these tasks, minus several machines. As of this fall, I will undertake her education needs as well because it's best for her health. As of today, I will be her nurse, teacher, advocater, insurance person, PT, OT, ST, and feeding specialist because her therapists think she needs a break...bc they feel she's in too much of a comfort zone AND due to my pregnancy and the new baby soon to come, "I won't/don't have time to do what needs to be done for her"
There are days that I feel like a complete failure. It's never ending...and days like today come and go routinely. Someday, maybe, I can separate my emotions for all the "jobs" I'm carrying, but today is just not one of them.
Thank goodness for my friend in GA who let me call and we talked, laughed, cried and shared our still very similar journeys. She's the lifesaver God threw in the ocean to me several years ago. Talking to her made me feel "normal".
In the end, I'm just an ordinary person living in extraordinary circumstances feeling the weight of the life of my precious child's life in my hands.
*exhale
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