Weekly Routine

It's hard to explain the schedule and routine that we have around the household. There are times that we feel housebound and times we feel like we are always in the car (and the proverbial "we" is really more Becky than me).

Titus has therapy 4 times a week: 2 OT and 2 PT. One day a week we are able to have back-to-back appointments. And some weeks we have speech therapy. Once a month vision therapy comes to the house. And we are in the process of setting up feeding therapy. Each therapy session lasts 30 minutes to an hour (depending on the type). They do push Titus pretty hard in therapy, and there are days he let's them know his discontent. Fortunately, our day-time nurse or Becky's mom is able to take him to therapy so Becky can stay home and work on home-school with the boys.

Lisa, our day nurse, comes 2 days a week (generally Mondays and Wednesdays). She stays late on Wednesdays and either goes to church with us on Wednesday evenings or if Titus isn't feeling well, she stays home with him while we go to church. She has become one of the family and is incredible with Titus.

Vanessa, our night nurse, comes 4 nights a week generally between 9-10pm and stays till 7-8am. She watches over him during the night, then feeds and bathes him in the morning so that he's ready to go to therapy. Titus definitely knows his nurses and snuggles into them with a big grin when they are at the house.

And that doesn't even include doctor's appointments that are scheduled around the therapy appointments. Some weeks there are none, and some weeks there are numerous doctor's visits.

Our nurses, therapists and doctors have become part of our extended family. We can't imagine life without them. They are not only strong advocates/cheerleaders for Titus, but have become dear friends.

But that's not to say it wasn't difficult at first to begin working with all these new people. Becky and I both remember the first night Vanessa came to watch over Titus. We had not met her or talked to her - all we knew was her name and what time she was showing up. It takes a big step of faith to let a total stranger into your house and stay with your child all night. (And I had to learn to make sure I didn't walk around the house in my underwear in the middle of the night/morning). But after months of leaving him at night in the hospital while in the NICU/PICU, you learn to trust a nurse to care for your child.

And the same goes for therapy - to hand your child over to a therapist and watch them push and contort your child to a position that they may not like or may cause discomfort is hard to watch at first. But you know and have to believe, that this is the best thing for them. So you sit quietly and encourage him and learn how to do the same exercises at home.

But Becky mentioned something the other day which really resonated. She stated, "the best thing about having the nursing care is that they are able to handle those therapy needs during the day, and that allows me to go in and just be a mom. "

And for the parents of any special needs child, that probably speaks to the core of all they have to do. There are days you are therapist, coach, trainer, and teacher and you miss out on just the simple pleasures of just being mom and dad, just snuggling on the couch and reading a story, just playing simply with a toy (and not as a training/therapy exercise), just singing and rocking your child to sleep. And realistically, you do play the same roles for your other children, but with a special needs child that requires so much attention on the basics, the role of the parent sometimes gets lost.

So, to our fabulous nurses, therapists and doctors, thank you. We so appreciate you and they way you love on Titus. You have helped bring him so far and encourage us on how far he can go.