My thoughts about my dear sweet Cassie Boo and how life begrudgingly goes on without her.
Thursday, July 28, 2005
Oh God, How I Miss Her
I'm able to work from home several days a week now and it is pretty nice. It's convenient, quiet, and I can walk around in my underwear, too. However, being alone at home I find myself really really missing Cassandra. I don't think she would still be at home if she were sill alive - she was doing so well after we we changed her formula, I think she would have been able to go to school and day care - but I think about being here working and taking care of Cassie, too, and I think it would have been neat. There isn't anything that I do now where I don't think it would be a little better with Cassie here. We go to the train, out to eat, shopping, and Cassie always made it more fun. I never got to take her to a baseball game either and that really sucks - a right of passage for a father that I'll never get back. But most of all, I miss snuggling up for naps with her. Cassie was a super napper and we could fall asleep anywhere together. As long as she had a warm arm around her and a soft shoulder on which to rest her head, she was in heaven.
Everything I start to write seems like something I've already said before, but I guess that's better than nothing. Little has changed in this past week and a half. We did get word that the medical reports on Cassandra's surgery and hospitalization have been completed and they pretty much don't tell us anything new, they just raise more questions. We probably won't have a complete picture until the autopsy is complete. Your child's autopsy is a subject that should NEVER have to come up, so it hurts just to type it. In the meantime Daria, Lesley and I have been to the Burke Lake train a few times and we went to a baseball game today - every step of the way thinking how much nicer it would be if Cassie was here to share it with. Finally, if you're reading my blog and you like it or something I've written touches you, please leave a comment. You can do that by clicking the "# comments" link under each post.
Cassandra should have been 23 months old yesterday. Would she have been walking by now? What would her hair look like now? Dark brown? A little wavy? Would she be eating yet? Would she still be sleeping between Daria and I? In her crib? In her own room? Would she be talking? How nice would it sound to hear her say "Mommy" or "Daddy"?
As a result of her G-Tube, Cassie had a very specific bedtime routine which seems like a lot of work, but again it was all just another part of our lives and a part of Cassandra that we loved and cherished. The routine when I had Cassie went like this:
First, I would prepare her last meal for the night, one bottle of formula, about 80cc. I'd grab her tube, a syringe, the bottle, and any medications she needed. Once upstairs we would play on the bed with Lesley and Mom for a while. Lesley got thrown around a bunch - we had to take it easy with Cassie but she loved to be tickled and rolled around.
Then Mom would take Lesley to her room and I'd get Cassie ready for bed. Take off her clothes, change her diaper, clean up her g-tube site, and put on her pajamas. Now it's time to eat!
I'd sit in bed and Cassie would sit between my legs both of us facing the TV. I would hook Cassie up to her tube and the big syringe and feed her the formula over a period of about 20 minutes. While she ate Cassie would play with a small syringe or a small toy, I'd tickle her and kiss her head, or she'd look up at me and grin a silly grin. When dinner ws over, the feeding supplies went on the nightstand, the lights went off, and it was time for bed.
This was my favorite part and probably what I miss the very most. I'd lay down in bed and Cassie would curl up next to me on my right arm. She would snuggle her head onto my shoulder and wrap her arms around my belly. It was so very comfortable. She'd wiggle around a little bit but soon she would be sound asleep in my arms. On bad days she would have a hard time getting to sleep or staying asleep and I'd be up there for hours. Other days I'd be able to roll her over onto her side and go downstairs after a few minutes. It was only very recently that Cassie was well enough that we could put her in her crib to fall asleep, but in retrospect that wasn't nearly as much fun. So I guess there was one good thing about that g-tube.
I say the Nissen didn't work because Cassie continued to throw up. A lot. In fact some days were so bad all she did was eat, throw up, then pass out. It makes me angry thinking about it because in my opinion she was much better off before the surgery. We could have been more vigilant had we not gotten the surgery and been very careful when she appeared to be getting pneumonia. At least in that case she still would have been getting breast fed as well as eating more solid foods, and she wouldn't have been forced to "eat" that awful baby formula and throw up all the time. It was so bad that she developed a hiatal hernia from throwing up and retching so much. Finally, no study has ever shown that aspirating breast milk causes lung problems or pneumonia. Had we had it to do it all over again, I would stronlgy lean toward not getting it done.
Still, the g-tube was as a part of Cassandra as her big beautiful eyes or her silly smile. We quickly became experts at getting her ready for feeding. Cassie's day care teachers at Mulberry even learned how to feed Cassie through the tube. Bringing her feeding supplies and hooking her up in a restaurant, in the car, wherever just became part of our routine. It wasn't a hassle, a pain, it was Cassie.
Cassandra needed a feeding tube or "G-Tube" (short for gastronomy) in order to get her nutrition. Cassie made several trips to the hospital the first year of her life because she had bad reflux and she was aspirating her food into her lungs. Cassie was a wonderful breast feeder and she even took to solid foods extremely well, however her reflux and aspiration kept making her sick - an infection would develop in her lungs and she'd get pneumonia. In April of 2004 Cassie was in the hospital for 25 days recovering from aspiration pneumonia and at that time the doctors told us the best course of treatment would be surgery.
Cassie would have to have a Nissen Fundoplication and a G-Tube. The Nissen was supposed to tighten the connection between her stomach and esophogus to prevent the reflux, and the g-tube was how we got the food into Cassie since she she wasn't supposed to eat by mouth anymore. Getting the G-Tube was very sad for us since Cassie was breastfeeding so very well and she had taken such a liking to solid foods. However, we needed to do this so Cassie could stay healthy and continue to grow.
We would simply mix up some baby formula or breast milk and pour in down the tube. It wasn't anything like eating had been for Cassie - she'd just sit there and Mom or Dad would hold her in our laps, g-tube in one hand, food in the other and slowly pour the food in.
Unfortunately, the Nissen didn't work as it was supposed to.
I think thats where I miss Cassandra the most - in my arms. We held Cassandra almost constantly. She was really sick for a long time and just didn't feel comfortable or safe unless she was being held. I don't think I or Daria felt truly safe either with out her arms wrapped around our neck or curled up on our chest. Sometimes I think I can still feel her - in my left arm as I'm carrying her around, careful not to tweak her g-tube site or "button"; curled up on my right shoulder as we both settled down for a nap. I feel her warmth, her soft skin, her little fingers on my neck, her little feet kicking me to get more confortable.
For the first time since she passed, I had a short little dream this morning about Cassandra. I was holding her in my right arm as I walked around, meeting all of the people I have known throughout my life. I was introducing them to Cassandra and telling them what a huge part of my life she was. Friends from high school, college, past jobs. Everyone was so happy to see her and so sad to learn she had died. And then, the dream was gone. I tried very hard to get it back, to force myself back to sleep so I could feel Cassie's weight against me again, but I couldn't.
I still have a little bit of that dream in my head now and I so desperately don't want it to go away. I'm going to go lay on the couch and try to hold her again.
It was the moment we always knew was coming with Lesley but hoped it never did. We were putting Lesley to bed last night when she rolled over and told us,
"I want Cassie, please".
You could almost hear our hearts breaking again. Over and over she would say, "I want Cassie, please," "Where's Cassie?" and "Where'd Cassie Go?" Daria and I have always been up front with Lesley, never talking down to her and never using euphamisms for death. We've always told Lesley that Cassandra died, that she's not coming back, and none of it was in any way Lesley's fault. But tonight Lesley wouldn't let us off the hook that easily. We explained again and again what had happened, but it wasn't enough. What was so painful this time wasn't her questions so much as it was the anguish in her voice. Lesley wanted to know where her best friend was and she wasn't going to stop asking until she knew. In her own way Lesley was able to sum up all of our feelings in that most beautiful, straightforward way that kids do.
We went to a 4th of July parade today and on the way we heard a song on the radio that I used to sing to Cassie while trying to get her to go to sleep. It was "Malcom McGillikitty" by Ralph's World and it has this great line in it which always felt comforting to me:
"But when I get scared in the middle of the night, he sneaks through the house and he lies by my side."
It made me cry, thinking of holding Cassie and singing it softly to her as she fell asleep, and of course I just bawl like a baby whenever I hear it or any other song I used to sing to Cassie. It sucks too, because those are the songs that I can actually sing well - I know all the words, I can sing it in tune, etc. These are some of the other sings that I sang to Cassie - and Lesley - when I was trying to get them to sleep:
For the first time today, I truly saw how upset Lesley is from losing her sister. Lesley is only 3 1/2, so it's difficult to tell how much she knows, how she feels, or just exactly what is going on inside her. Frequently Lesley will say "Cassie" but we're not sure what she means. Daria carries many pictures of Cassie and the rest of the family in her purse, so usually Lesley just wants a picture. We try to talk to Lesley about Cassandra, but she doesn't really want to talk. Maybe she juts doesn't know what to say. Today in the car Lesley was again asking for "Cassie". Daria took out the pictures and gave them to Lesley one at a time, but Lesley kept getting frstrated. "Cassie! Cassie!" she yelled. We had given Lesley all of the pictures we had, but she was getting more and more upset. I realized then that Lesley wasn't satisified with just a picture - she wanted her sister back. Lesley got very very upset and began to cry. So did we.
I'm able to work from home several days a week now and it is pretty nice. It's convenient, quiet, and I can walk around in my underwear, too. However, being alone at home I find myself really really missing Cassandra. I don't think she would still be at home if she were sill alive - she was doing so well after we we changed her formula, I think she would have been able to go to school and day care - but I think about being here working and taking care of Cassie, too, and I think it would have been neat. There isn't anything that I do now where I don't think it would be a little better with Cassie here. We go to the train, out to eat, shopping, and Cassie always made it more fun. I never got to take her to a baseball game either and that really sucks - a right of passage for a father that I'll never get back. But most of all, I miss snuggling up for naps with her. Cassie was a super napper and we could fall asleep anywhere together. As long as she had a warm arm around her and a soft shoulder on which to rest her head, she was in heaven.
