Case Manager, Therapist, Nurse, Advocate.........Mom

I remember the days of early intervention.  Several times per week, various therapists would come to the house to work with my youngest son: the physical therapist, the occupational therapist, the speech pathologist, the teacher for the visually impaired, and the child development specialist.  I hated every minute of it.  No, I take that back; “hate” is such a strong word.  I resented every minute of it.  Well, not every minute.  Just mostly every minute.  I do not want to sound ungrateful.  Lord knows, I am very grateful for all of the time and expertise put forth by all of the therapists.  Truly, I am; and with Thanksgiving only three days away, I need to remind myself of all I have to be thankful for.  But, all during that time I kept wondering, “When do I get to be just a mom?”  Oh, that would be never.

I'm guessing that when most women have children they do not envision having a team of professionals who will teach them how to interact with and care for their child.  Seriously, I might have fantasized about having a nanny or a housekeeper, but never an entire team of therapists.  (An entire team of therapists who came to the house every week, which for some reason created a lot of self-inflicted pressure to keep the house clean, or at least, presentable.)  Nor do I think that most women envision seemingly endless medical tests and appointments with specialists.  Most soon-to-be moms envision the 2:00 am feedings, diapers, naps, cuddle time, play time, and trips to the park with their baby.  The usual mom stuff...that's what I envisioned.

A mom with a special needs child is never just a mom.  She is a case manager who is responsible for coordinating therapy appointments, medical tests, and doctors appointments.  She is a therapist who is responsible for implementing the exercises and techniques that the therapists recommend, and ensuring that therapy time and playtime are synonymous.  She is a nurse who is tasked with dispensing the daily medication or cleaning the G-tube or monitoring some other medical device.  She is an advocate who researches and lobbies for the programs/medical procedures/therapies that will benefit her child, all the while feeling a twinge of guilt wondering if there was something she missed or wondering if she didn't fight hard enough.  Finally, finally, in between all of this are those precious few moments when she can be just a mom, sort of.  Those moments when her autistic child briefly makes eye contact with her while lining up trains; when her blind, nonverbal child hugs her before bed; when her deaf child signs “mom”; when her Downs Syndrome child smiles at her as they look at a book.  Those are the moments when we are just moms.