Taylor's normal

The weeks keep flying by and we are well into spring now. I can't believe Easter is right around the corner. Life continues to be very busy, mostly fun, and sometimes hard. Although, it's funny - I remember writing awhile back how we were so looking forward to our "new normal" - where our life with Taylor and the unexpectedness of her condition would be normal for our family. Sometimes I think we've made it, and other days, I know we haven't. We will have weeks, where we are so into our routine - which has to work like a well-oiled machine - that I don't stop and think about the enormity of it all. Other times, I am gripped by this desperate longing for it to all be OK. The definition of "OK" has evolved - where I want Taylor to be happy and healthy, hopefully walking and talking, and able to find joy everyday - regardless of whether she's a college professor, working at the Gap, or helping at Children's Hospital. I want Lauren and Jacob to reach their potential - with the stress free lives that all children should lead. And know that they are loved so very much by parents who will do anything for them.

In any case, we continue to take comfort that we're doing the best we can. Taylor's schedule continues to get busier and busier, and we're doing our best to adjust without impacting the other kids - mostly Jacob, because he doesn't have school on Tuesdays or Thursdays. We're so thankful for Aunt Shannon, who is so gracious with playdates with cousin Graham and lots of other friends who create fun times for Jacob so he doesn't have to go to therapy or appointments. Alison continues to be a rock - doing everything she can for Taylor and our family. We really, truly could not do it without her - as with Julie before her, this family is so much more than a typical nanny job - and we are infinitely grateful for her patience, dedication and true love for Taylor.

I haven't updated the blog on Taylor's typical week in awhile - so here is a sense of how busy our little gal is.

Monday - school from 9-10:30am; therapy (mainly arm stretching so her arm doesn't get tight) from 10:45-11:45am - Alison is a trooper and does the Monday appts.
Tuesday - therapy from 9-11am; special 1:1 school session at the EEU from 12:30-1:30pm - Alison again does the therapy appt and David does the school session. The school session will soon move to Friday, which will be great because then I can take Taylor.
Wednesday - school from 9-10:30am; speech therapy from 11am-12pm - David usually took her to school, although now I am trying to take her to school and to speech
Thursday - therapy from 9-11am - Alison again
Friday - therapy from 9-11am - this is my session

This is the standing schedule - not including a myriad of dr. appts and the other stuff we work with her on at home. The scheduling can be exhausting, particularly because I don't want to over-burden the big kids or Alison, and David and I need to stay employed. We are blessed with flexible schedules and lots of wonderful friends that pitch in. Thankfully, it's much easier now because Taylor is mostly happy at school and therapy.

So, when you add in the big kid's schools, soccer, Tball, reading tutoring, playdates, birthday parties, etc. - at times I am overwhelmed. But I can honestly say that most weeks - we are a well-oiled machine and are approaching a normalcy that I hadn't predicted a year ago. Of course we are hopeful Taylor's schedule will slow down soon - for her mostly, but also for the rest of us. But in the meantime, we take comfort that we're pushing her as much as we can, while still leaving time for her to be a kid - because isn't that the most important "normal" of all?