A Day in the Life

I know when I was new to the special needs thing, I was scared. I had no information about what my day-to-day was going to be like. I felt like I couldn't make plans for myself because I had no schedule, no prediction of what each day was going to bring. This post is for all you new moms and dads to the special needs lifestyle. Obviously, it's different for everybody. But finding blog posts that described the day-to-day with the feeding tube, or hypotonia, or healing from surgery, was so helpful. So I've decided to do a series of posts that detail our schedule, and how it changes after surgery or a new medication or what have you.

On a regular day, this is the schedule, more or less.

7:00

I wake up first. Always. The hour I have to myself, and the hour I have just with Jeff, are so wonderful. It's a chance to recharge, to breathe, to get ready for the day without worrying about what Maisie is doing right at that moment. I would recommend that EVERY mom set this time aside for herself, not just special needs moms.

8:00

Jeff wakes up. Usually by this time I have coffee ready for him and sometimes muffins or pancakes or something. We sit and eat and talk. With a little girl who demands so much time, it is super important to us to have some time that is just us.

9:00

I go get Maisie and Jeff leaves for work. Very occasionally, she wakes up before nine, but I always wait to go in there. The door is locked from the outside. I know. What kind of parent locks their child up at night?! This one. This is a system that works for us. It creates a mommy boundary. Maisie knows that mommy is left alone in the morning unless there is an emergency. Our house is really small, and I know immediately if she's in trouble because I have a video monitor and I can hear her. I also think this deliberate separation, even for just a few minutes, helps keep Maisie from getting separation anxiety to a really severe degree. Special needs kids often do because they spend so much time with their mothers and go through so much pain and tribulation.

9:30

Hopefully by this time Maisie is eating breakfast. For her, "eating breakfast" lately means getting a feed through the tube while picking at bananas, graham crackers, oatmeal, Cheerios, etc. Because her weight is still so low (24 lbs 4 oz) she eats mostly her prescription formula through the tube. When she hits 25 pounds, I will hopefully be able to start giving her a blenderized diet, which is more like smoothies.

10:00

On Wednesdays and Fridays, this is physical therapy time. On Mondays and Thursdays we try to do something social or educational. There's an excellent children's museum twenty minutes away that we go to fairly regularly. Sometimes we go to the library. Sometimes we stay home and bake cookies (which means stander time in the kitchen with a bowl and spoon) or have friends over. Right now, Kaitlynn is still around (nothing's wrong, she's just taking time off) so we see her fairly regularly. 

1:00

Lunchtime. I try to eat my lunch at the same time that Maisie does just to drive home idea that what she calls "tubie time" is eating, particularly on days when she doesn't manage to eat anything herself.

2:00

Nap time! Maisie naps every day at two, even at four years old. It's usually somewhere between half and hour and forty-five minutes to an hour, but on really difficult physical therapy days, she's napped for nearly two hours. After the nap she plays or watches Doc McStuffins or Adventure Time, usually in her stander.

5:00

Jeff gets home and plays with Maisie while I make dinner for all three of us. He is so great with her. Sometimes he plays a board game with himself while she watches (Maisie LOVES board games. I don't know why exactly, but she finds them, and Jeffy/Daddy fascinating and hilarious) or he plays Barbies or Doc McStuffins with her.

6:00

Dinnertime! Maisie gets her third feed and some of whatever Jeff and I are eating. I don't really know why, but this is definitely Maisie's favorite time of the day. She is never so happy and smiling as when we are all together at the table eating dinner. By the by, she eats in either a stander or the Mamas & Papas Baby Bud booster seat. I am in love with this thing. Special needs moms will know that special equipment is SO EXPENSIVE and when you find a mainstream booster seat that works, it's a miracle. The Baby Bud is wonderful because it can give her lots of support if she needs it, or she can just sit and use her own strength. It's also so easy to clean and doesn't have any spots for food to slip down. We can also access her button in it without any problems. I don't know what we're going to do when she grows out of the Baby Bud, because it's only supposed to fit up to three years. It was pricey at $70, but WAY better than the $400 that we would have had to shell out for the Special Tomato booster seat and chair back that was suggested to us (http://www.specialtomato.com/specialtomatoliner1.html).

7:00-9:00

This part of our day is less scheduled because it depends on how Maisie is feeling. Sometimes she gets a fourth feed, sometimes she goes to bed right after dinner. Sometimes we watch a movie and she falls asleep in the middle of it. Sometimes she just plays. Sometimes we even do some therapy if she's feeling up to it. And by "therapy" I often mean long, drawn out bath time. Being in the water is really great physical therapy for her. We even do it in legit physical therapy. She floats on her back or her belly and flaps her arms and legs. We're hoping to start doing physical therapy in the nearby YMCA. Anyway, without fail she's asleep by 9:00 and Jeff and I aren't far behind.

So that's a typical day. I'll talk about after surgery, in the hospital, and whatever other "norms" I feel the need to outline later.