Tuesday, March 5, 2013

Team SULLIVAN & Spencer: Day 17 - 19

SATURDAY 3/2 (continued)

I can never get home quickly enough when I leave here on the weekends. It feels like we live on the moon! When I walked in the door and it was clean and the laundry was already done, it was great. I was able to totally focus on Sullivan. Going into the living room, Sully was following my voice and smiling which made me MELT. I scooped him up and was just SO HAPPY. Coming home for a little mental health break was the right decision.

Even though it was snowing, I packed Sully into the car and headed to the grocery store. It was nice to be out with him doing something normal. I filled the car with things I wanted to cook. It wasn't even that I wanted REAL food. Being able to cook was going to be amazing too. Once we got home, we were in for the night. I made myself a nice dinner and had a carpet picnic with my baby boy. Another day of good food and bad TV and I loved every minute of it. Even hanging up laundry was relaxing. Sully Porkchop fell asleep holding my finger, swoon, and I slept like a CHAMP!


I woke up next to the most handsome red head on the planet and was still riding a happy wave. More TV, laundry, paying bills, taking a shower...just regular day-to-day stuff that I was taking for granted. I cooked arancini (parmesan risotto cooked in chicken sock, stuffed with mozzarella and fontina, breaded, and fried) which was time consuming but amazzzzzing. Maybe the best thing I've ever cooked. Paired that with a tomato mozzarella salad dressed with lemon and couldn't wait even MORE to just be home, cooking and
living. I was on a cloud. And Sully was perfect company.

While I was getting Sully dressed for an adventure into the real world, Todd told me that Spencer's hair was falling out which broke my heart to hear. I was hoping he was just overreacting. I had to see it for myself. I went to Target with my mom to get some formula and a few things for the hospital. I was really starting to feel low about having to come back here. I can't wait until my whole family can be together again but it won't be for long enough. And if Spencer was really losing his hair...I just wanted to stay in my little home bubble with Sully. And I didn't even feel bad about that. I felt bad about NOT FEELING BAD. Does that make sense? Once again, Sully fell asleep holding on to mom.


I packed the bags, packed the car, and after a Starbucks pit stop (it's the little things), I was on my way downtown. When I got here Spencer was happy to see me but more to see his baby brother. I was so glad that they got to play and just wanted to scoop them both up and run. But when I ran my hands through Spencer's hair, I had a handful of strand. Every time, more and more hair fell to the ground. It was all over his may and his pillow. I broke down and cried while Todd rubbed my back. I would've gone into the bathroom but I was frozen.

Out of everything he's gone through, will go through, could go through, losing his hair should be the least of my worries. My pal Jen said that a moment like this is much harder than people think. It's the first obvious sign that things are different. And Phoebe said that because she DIDN'T lose her hair, it was hard for people to realize she was as sick as she was. It goes both ways. He's by no means bald right now but he's thinning out. He had a nice head when he was a baby. I just hope he doesn't lose his dark, thick lashes. Sigh...

Spence was having a lot of difficulty with his IV while I was gone and nothing had changed. Every few minutes, the alarm went off. The nurse spent all her time in our room and Spencer was so frustrated because he had been poked, prodded, rearranged, re-taped, re-arranged sooo many times. After a few visits from the IV team, they moved it out of his anticubital to his hand and everyone was much happier. You can't put an IV in the fold of a baby's arm and ask them not to fold it! Hours of trying to get this IV squared away, the little man was exhausted and so was I.

I had been too busy to REALLY miss Sully until bedtime but when the feeling came, it hurt. I didn't feel as broken down as I did by the time I went home but I knew I couldn't take much more of this. I know it could be worse. I could be alone, no friends, family or help. And Spencer could be acting totally sick, which he's not. But I'm human and the situation is still rotten.

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