The Final Leg Of This Part Of The Journey
Looks like we're headed down the home stretch. Charlotte is still mostly alert and can give us head nods and point to fingers but little parts of her central nervous system are shutting down. She can't open her mouth right now (we're working on that) and she’s not swallowing so we might get an IV pump just to get her liquids and nutrients. The latest protocol of drugs, including morphine, has actually helped a bit.
She slept on our laps all night last night (Rachel and I took turns) and I think it was the best night of sleep we've all had in a long time.
It's very important for everyone to know that most of the time, she's in no pain. We often ask her if she’s hurting anywhere and usually it’s no. She's just hungry and thirsty and occasionally uncomfortable/itchy (from the morphine) but not in pain. The Noah’s Children hospice nurse is downstairs now checking on her.
It's also important for everyone to know that as we get closer to the end, I think I'm doing better with things. I've already accepted a lot of it but didn't want to totally let go and I have been having a rather hard time with things the last week or so. I still follow a bunch of Caringbridge sites and the usual progression of things in the terminal stories is that once the morphine is introduced, the end is not far away. So, understandably, I've been kind of dreading that part of it. Dr. Archuleta, the primary hospice doctor, prescribed morphine Tuesday night and I went to pick it up yesterday. It was a tough, lonely drive home after that and I felt myself almost breaking down more than once. But as I got closer to home, things seem to lighten up. Not sure why but I was at least functional when I got there.
I prepared the latest doses of everything, including the morphine, and without a lot of fanfare, I gave her the first dose. I was determined to be the one to do it and I was remarkably calm about it. I think I finally (almost) let go. Her reaction to everything was great. She became chatty and the readers who came by kept her engaged all afternoon.
She started fading around 6pm and by the time Miss Christy came by with a tasty bottle of wine, some good books, and The Sound Music video, she was pretty out of it. We also really first noticed that she couldn’t open her mouth right about then.
I’ve been using the voice memo app on my iPhone to record little snippits of CJ saying a few choice statements like “I love you Granny.” Looks like that was a good idea Aunt Jamie Jamie Tamm Tamm.
As I was holding her throughout the early morning hours, I would wake up and check on her breathing, fully expecting her to not be. I wasn’t scared. I wasn’t sad. I felt very matter-of-fact about the prospect that I might be holding CJ’s empty cocoon. When everything is right in front of me, I do and feel my best. I have the most trouble when I’m not around it and my mind wanders. I’m pretty good at dealing with the situation at hand but not the “What-ifs.” Pretty soon, I won’t have any more “what-ifs” to worry about and that’s mostly a good thing.
There are still so many positives and little bonuses here and there. This morning, CJ was still sitting on my lap and we were watching “Superwhy” on PBS. The Alpha-Pig has an alphabet song that ends with a “big thumbs up!” and CJ was right there with hers! She likes the show and obviously knew what was coming. I don’t remember ever noticing that before so it was a very cool moment.
Karen Giles came by this morning to read and the last book she pulled out was The Very Hungry Caterpillar by Eric Carle. It’s always been a favorite of ours and has taken on new meaning recently. Thanks Karen (and her husband!). Her daughter, who is a long, long, LOOOOOONG time member of Romp n’ Roll, drew a snowman picture for Charlotte and CJ liked it so much, she wanted to hold it. We ended up taping it to a chair so she can see it.
Since the start of this post, the entire hospice team has been by except Dr. Archuleta and he’s slated to be here any minute now. We spoke to Nurse Cathy about drug options and where we might place the oxygen pump that was delivered last night. With social worker (?) Cathy, we covered some of the proper things to do following CJ’s passing and had a chance to do some actual planning out loud which was very helpful. We even spoke at length about the memorial service. Rachel made a list. That’s a good sign.
We had to give CJ another dose of morphine and she was not happy about it. Since she isn’t swallowing, it only takes a few minutes for it to come dribbling back out but it absorbs quickly under the tongue so it’s still effective. Uncle Kolbey made faces at her to cheer her up.
LATER…
Wow! It’s now 11:00pm and what a night we’ve had! First off, Dr. Archuleta came and checked out CJ. He had to see in her mouth to make sure there wasn’t some kind of infection or sores keeping her from opening her mouth but she wasn’t very cooperative so I got the wonderful job of holding her head while he stuck a tongue depressor in there to pry it open. No one was happy about it. Once it got in there, though, it really wasn’t that big a deal and she was ok. But I wasn’t. Just having to force her to do one more thing she vehemently didn’t want do was a little too much for me and moments after Dr. Archuleta was through, I pretty much lost it in front of everyone. Good thing Rachel and Aunt B were there.
How wacked is this? I wake up in the middle of the night fully expecting and ready to be holding CJ’s lifeless body and I’m OK with it yet when I participate in a necessary procedure that ends up not being all that big a deal, I’m a mess. Man! My brain candle is dripping wax.
Well…Dr. Archuleta prescribed intravenous versions of all the oral drugs we had been trying to give her and some new stuff and finally, during the evening, Patty, a Noah’s Children nurse (quite the character, I must say) came by and gave us a tutorial on the protocol. The most complicated part is the mixing of the Atavan. No problem, though. We’ve got it! CJ is all about her central line. You could put motor oil through her Hickman and she’d be fine with it.
Still no open mouth yet. Which means no eating or drinking. She won’t even take a wet washcloth. Dr. Archuleta mentioned the new drugs might relax her mouth/neck muscles enough to have a brief reprieve, which would allow us to try some very soft food for her. He also (sort of) urged against IV fluids and nutrients if we can’t get any real food into her as it would probably make things worse (as in more painful which Rachel and I are not going to allow). We’ve actually heard this before so it didn’t surprise us.
SO…(heavy sigh)
If she doesn’t open her mouth, she won’t take in any fluids. If she doesn’t take in any fluids, she’ll become dehydrated in a couple days, her kidneys will begin to shut down and she will be gone before Christmas. If she opens her mouth and somehow has the ability to swallow, she’ll linger a while longer. There will be no feeding tube or IV fluids. Forcing her to stay longer simply because we don’t want her to go would be inhumane, unfair, selfish, and unkind.
Pastor Ed from St. James The Less came by as well tonight and we discussed the memorial service and what we might like to have/do. As I’ve mentioned before, I’m not one for officially organized religion but Pastor Ed makes me think which is why I like him. I also like to pick his brain about all kind of things, not just spiritual matters. We also love St. James The Less because of everyone's commitment to each other. It's the very definition of "community" and "fellowship" and we love everyone there.
We’re pretty sure there will be a large number of people wanting to come and celebrate CJ’s life and the energy she put out into the world so we’re thinking it will be held at a larger venue than SJTL. Blackwell Auditorium at Randolph-Macon College Campus comes to mind as a possibility if we can get it. It will be a kid-friendly service and there will be lots of music. I will be contacting people to see if they’d be interested in playing so keep your ears peeled. The final song has to be a big group-sing of Frosty The Snowman.
Not long after Ed left, Critical Care came by with new supplies reflecting the new protocol and not long after, nurse Patty showed up with the drugs.
After I administered her first dose of IV drugs, it was like she finally let go and zonked out. I put her in her downstairs bed and at last check she was sleeping very peacefully.
That doesn’t mean nothing was going on. In fact, with the introduction of the IV drugs, a positive change seemed to come over the house. I’m not just saying that. Most everyone here tonight felt it.
Tonight, the house became a hub of activity, buzzing with positive energy and bringing the mood up out of the pits.
Jay Campbell, CJSTUF.org’s webmaster and IT guru, was here helping us fix stuff on the website.
Our neighbors, Bob and Jamie Flanagan came by to visit bringing the newest member of their family, Caleb, to the “show.” Their son Larson is one of Charlotte’s oldest friends. He and Wyatt are the two boyfriends.
Dr. Anna Madland (chiropractor extraordinaire) dropped by with her table to give Rachel, CJ and me adjustments. It was very nice! She also got a bite to eat.
Beth (our Disney World paparazzi), Sean, and little Dylan Harris came by to read/sing to CJ. Sean even brought his guitar and quietly played/sang to CJ as she slept. It was so touching. He’s even written a song about all this. Beautiful!
At one point, almost all of these things were going on at the same time creating a very positive vibe. Noisy too! Even nurse Patty commented on it. It’s how a passing should feel. It’s how I want the memorial service to feel. The tears are still coming here and there and Seth’s song had us all crying but that’s ok. It felt healthy. That’s what I need to keep hold of.
As usual, I implore you to love on your family and friends like you won’t see them tomorrow.
Friday, December 18, 2009
Wednesday, December 16, 2009
Tuf Stuf
It is really hard to watch this happening.
She slept really well last night (over 12 hours), woke up still seeming to be uncomfortable. Roger went out to the pharmacy ASAP and got the new prescriptions, including the morphine. She got her first morphine dose at about 11:30 AM and contrary to the usual logic of knocking her out, it proceeded to pep her up. By 12:30, she was talking, reading with Aunt B, and seemed to be doing pretty well. She had a lovely visit with Ms. Sue-Sue (a neighbor and friend) and another nice reading session with our friend Kim, but by 6 PM she was REALLY fading. Since 6:30 or so, she has seemed very uncomfortable despite having all the medications we can give her at this point. She can't really talk to tell us what she needs and she is obviously not happy. Did I mention how much this sucks? I keep trying to think about the butterfly analogy and just think that it is her cocoon taking over. Sometimes the visualization works and sometimes it just makes me feel horrible. To add insult to injury, the medical equipment company delivered the oxygen machine. I just feel like we're being swallowed up by terminal illness "stuff."
My day was good in that I got a lot of things "checked off" my list. The requests to read with CJ have POURED in and a good part of my day included filling out the calendar. Available spaces are becoming as hard to get as Barbra Streisand tickets in San Francisco but there's still some time available if you are interested. Check out the previous blog post for helpful hints on this.
Thanks for the sweet notes and kind visits we have already received. There have even been some good, healthy snacks coming our way!
tomorrow's agenda includes another visit with the Noah's Children folks and Friday is Jam-Packed with reading/entertaining CJ. Plus, Roger will return to teaching at RNR officially on Friday. Wish him luck!
I'm gonna sign off because I just don't have anything else to say...
She slept really well last night (over 12 hours), woke up still seeming to be uncomfortable. Roger went out to the pharmacy ASAP and got the new prescriptions, including the morphine. She got her first morphine dose at about 11:30 AM and contrary to the usual logic of knocking her out, it proceeded to pep her up. By 12:30, she was talking, reading with Aunt B, and seemed to be doing pretty well. She had a lovely visit with Ms. Sue-Sue (a neighbor and friend) and another nice reading session with our friend Kim, but by 6 PM she was REALLY fading. Since 6:30 or so, she has seemed very uncomfortable despite having all the medications we can give her at this point. She can't really talk to tell us what she needs and she is obviously not happy. Did I mention how much this sucks? I keep trying to think about the butterfly analogy and just think that it is her cocoon taking over. Sometimes the visualization works and sometimes it just makes me feel horrible. To add insult to injury, the medical equipment company delivered the oxygen machine. I just feel like we're being swallowed up by terminal illness "stuff."
My day was good in that I got a lot of things "checked off" my list. The requests to read with CJ have POURED in and a good part of my day included filling out the calendar. Available spaces are becoming as hard to get as Barbra Streisand tickets in San Francisco but there's still some time available if you are interested. Check out the previous blog post for helpful hints on this.
Thanks for the sweet notes and kind visits we have already received. There have even been some good, healthy snacks coming our way!
tomorrow's agenda includes another visit with the Noah's Children folks and Friday is Jam-Packed with reading/entertaining CJ. Plus, Roger will return to teaching at RNR officially on Friday. Wish him luck!
I'm gonna sign off because I just don't have anything else to say...
Reading to CJ: Helpful Hints
Hi Everyone! Just thought I would offer a little tutorial on the "READING to CJ" stuff as there have been lots of questions. The requests are coming in and we are looking forward to it. I may reiterate some things I posted earlier. To recap:
- Go HERE on the website to look at the calendar. The calendar is best viewed if you click on the tab that says agenda. If you click on the Reading to CJ Available item on each day, you will get detailed information about everything including a map with our address, etc.
- If people have signed up for a particular day or time OR if we have something already scheduled on the calendar, it is listed on that particular day.
- Go HERE (or click the Contact Us link on the website) to send a Read to Charlotte request. Please indicate the dates and times that you prefer as well as whether you would like to come for 1 or 2 hours.
- Remember that you do not need to read for the entire time. Singing, music, and visiting are also welcome. If you end up not staying for the entire time, that is ok too.
- Healthy children are welcome to come as well.
- If you are out of town and have access to a webcam, you can SKYPE in to read to Charlotte. Please send a request in the usual way but let us know that you will be SKYPing in.
- Also remember that CJ does not need to be awake in order for you to visit.
- Please do NOT bring gifts for us or for CJ. Your visit is a gift beyond measure. We do welcome healthy meals and/or snacks (freezer ready = even better!). You may bring a book/story of your own to share or pillage our library.
I think that's it for now. Thanks again for your support!
Rachel
Tuesday, December 15, 2009
Settling In
Our return trip was easy and relatively uneventful. At least the traveling part.
The day before, Charlotte slept a lot and seemed to be getting more and more uncomfortable. She didn't seem to be in any acute distress but she just seemed to have a lot of discomfort. Her breathing rate has increased and we have noticed more difficulty with her ability to chew and/or swallow her food. She also seems to have more difficulty verbalizing her needs or responding to choices. All in all, Roger and I were noticing changes in her behavior and physical abilities. She can't really walk without trunk support anymore either.
We ended up spending the night at my mom's house instead of the condo. Roger and I got a little bit of sleep but I think it's still more sleep than my mom got. She stayed by her side all night. Knowing my mother, she probably slept little but I know that was time well spent as far as my mom was concerned. The morning dawned rather darkly (emotionally). It was difficult to say goodbye to my mom at the airport and I know it was very difficult for her as well.
As mentioned, the trip through the airports was pretty easy. Charlotte was a good traveler and slept/rested on most of the flights. She did grace us with a MASSIVE poop during the trip from Charlotte to Richmond. Fortunately it was a short flight and Roger took on the challenge of changing her in the tiny airplane bathroom. Kudos to him!
We were met by our limo driver in Richmond. It was funny because when he picked us up, he said that he had NEVER picked up folks at the airport before. Apparently he is an "event" limo driver (for proms, weddings, etc.). It was pretty clear that he'd never done this before since Roger had to actually ask him to help us with our bags. While I navigated CJ in her stroller with a backpack and two bags, the driver carried two small duffel bags, and Roger carried: the car seat, two bags, AND rolled the huge suitcase. So much for customer service. Anyway, it wasn't a big deal and we did enjoy our ride home. CJ conked out again as soon as we got in the car and stayed asleep till about 5:30 this morning.
This morning, I went to Target and Ukrops to get some groceries. Roger and I are on a serious "healthy eating" tear. We have indulged and imbibed way too heavily, not just in the last two weeks but in the last YEAR. I am done with feeling overweight and sluggish. So I filled the pantry and fridge with healthy foods. Hopefully it will last. We will encourage anyone that wants to make us meals to err on the side of healthy rather than comfort. Our mid-sections are in serious need.
Thankfully, we came home to a beautifully clean AND decorated house. Our friend Jan recruited some of her friends and they seriously reorganized our house in our absence. It was needed and we were grateful. Now I'm afraid I'm going to mess it up but it was nice to come home to a clean house. Plus there have been additional Christmas decorations added to create something of a festive atmosphere. I am very grateful for these angels.
Our afternoon consisted of a meeting with our team with Noah's Children. We were finally able to meet Dr. Archuleta, CJ's new primary care physician. Nurse Cathy and "the other Kathy" (our social worker) were also there. We shared our observations over the past few days as well as Charlotte's current medications and Dr. Archuleta had a chance to talk and interact with Charlotte a bit. By the end of the visit, we had discussed numerous options and ideas. While it is possible that some of her fatigue and symptoms could stem from "travel exhaustion", there was general consensus from all of us on the team that she has changed in the past two weeks (and most definitely in the last few days). Most likely, this is due to progression of the disease.
Dr. Archuleta wants to alter her steroid dose for a few days to see if it changes anything. In addition, he has given us a prescription for morphine (a very low dose) to hopefully regulate any pain she is experiencing as well as some of her breathing difficulties. We are discussing more and more what our options and plans will be when the time comes. Man, this sucks.
The team is returning on Thursday to reassess our needs and Roger and I will actually spend a good deal of time with Kathy to talk about some of our wishes for Charlotte once she passes. It is so surreal to have these kind of discussions. I can't even explain it. It's like an out of body experience.
After the team left, Charlotte watched some TV and hung out with Uncle Kolbey for a bit. I tried to get a few things done (catching up on emails, unpacking a few things, etc.) before he had to leave for his concert at the HAAC.
Aunt B (Roger's sister) arrived at about 5 this evening and Charlotte got to spend a little time with her before she fell asleep. Those of you following us on Facebook know that Roger was trying to find out if Santa came through on the firetrucks already (those of you who live in Hanover County know what I'm talking about). Well, apparently Santa's visit to our neighborhood was last night, while we were flying over Georgia. Not to be deterred, our network jumped to the task and Meredith contacted the fire station about making an extra stop for Charlotte tonight. They agreed to stop by our house before the rest of their run at about 6:30 tonight. Of course, Charlotte fell asleep about 15 minutes before they arrived!! I tried to rouse her a bit to say hi to Santa but I think she was a little bit out of it. I am still grateful to the Ashland Fire Dept. for coming by! Thanks to Meredith for her help!
Roger actually went to work tonight. There was a FACES event and Roger and our RNR standby Anna went in to entertain the troops! He's on his way back as I type this. I think he is definitely ready to get back into the RNR groove.
Regarding the Reading Vigil AKA Reading to CJ: A few of you have contacted me via the website and/or email about reading to CJ. I just want to clarify. I am going to work on the "official" schedule. There will be probably be times blocked out when we are NOT available for reading. Otherwise, pretty much any time is open. When you email me, please do so through the website and please let me know the best times for YOU and whether you expect to stay one hour, two hours, etc. I have not updated the calendar and/or website yet but will do so by tomorrow. If you have contacted me, I will try to get back with you by tomorrow as well. For now, I think we will keep the reading to between 6 AM and 10 PM but eventually, it could be a 24 hour thing. It may fluctuate based on her schedule. If you are from out of town and want to SKYPE in via webcam, that is a definite possibility. Also, CJ does NOT need to be awake. Please be ready to read to her even if she is asleep. That's part of the plan. It also does not need to be strictly reading. We welcome music, songs, or anything kind of "mellow". It could also be visiting time. Please do not bring any gifts for CJ when you come to read. Your visit is a gift beyond measure. You may bring a special story to SHARE but not to leave. We also have many books here at your disposal.
Before I close, I want to share something specifically for our Denver network: a family that we met in Houston lives in the Denver area. They just returned from a four month stay in Houston and they are in need of pretty significant assistance. I know that we have a great network of friends and family in the Denver area who would like to help us. Well, I would like to make this family the first "unofficial" recipients of the CJSTUF goodwill network. I need one person from the Denver area who would be willing to act as point person and liaison for this family. I think right now, aside from the moral support, they need meals, financial assistance (fundraisers?), and some help caring for their other daughter while they deal with their sick daughter's (probably terminal) illness. This point person would contact the family (with my help), find out their needs, and then network with the rest of our Denver network to assist in any way necessary. We may use this blog and our website as a vehicle to assist them as well. If you live in the Denver area and think this might be the job for you, please email me personally at rachel@cjstuf.org This family has no family in Denver to help them. Knowing how much we have benefitted from our local network, I can only imagine what having local assistance will do for them as well.
I think that's it for now. I will sign off and wish you good evening. It's good to be home.
The day before, Charlotte slept a lot and seemed to be getting more and more uncomfortable. She didn't seem to be in any acute distress but she just seemed to have a lot of discomfort. Her breathing rate has increased and we have noticed more difficulty with her ability to chew and/or swallow her food. She also seems to have more difficulty verbalizing her needs or responding to choices. All in all, Roger and I were noticing changes in her behavior and physical abilities. She can't really walk without trunk support anymore either.
We ended up spending the night at my mom's house instead of the condo. Roger and I got a little bit of sleep but I think it's still more sleep than my mom got. She stayed by her side all night. Knowing my mother, she probably slept little but I know that was time well spent as far as my mom was concerned. The morning dawned rather darkly (emotionally). It was difficult to say goodbye to my mom at the airport and I know it was very difficult for her as well.
As mentioned, the trip through the airports was pretty easy. Charlotte was a good traveler and slept/rested on most of the flights. She did grace us with a MASSIVE poop during the trip from Charlotte to Richmond. Fortunately it was a short flight and Roger took on the challenge of changing her in the tiny airplane bathroom. Kudos to him!
We were met by our limo driver in Richmond. It was funny because when he picked us up, he said that he had NEVER picked up folks at the airport before. Apparently he is an "event" limo driver (for proms, weddings, etc.). It was pretty clear that he'd never done this before since Roger had to actually ask him to help us with our bags. While I navigated CJ in her stroller with a backpack and two bags, the driver carried two small duffel bags, and Roger carried: the car seat, two bags, AND rolled the huge suitcase. So much for customer service. Anyway, it wasn't a big deal and we did enjoy our ride home. CJ conked out again as soon as we got in the car and stayed asleep till about 5:30 this morning.
This morning, I went to Target and Ukrops to get some groceries. Roger and I are on a serious "healthy eating" tear. We have indulged and imbibed way too heavily, not just in the last two weeks but in the last YEAR. I am done with feeling overweight and sluggish. So I filled the pantry and fridge with healthy foods. Hopefully it will last. We will encourage anyone that wants to make us meals to err on the side of healthy rather than comfort. Our mid-sections are in serious need.
Thankfully, we came home to a beautifully clean AND decorated house. Our friend Jan recruited some of her friends and they seriously reorganized our house in our absence. It was needed and we were grateful. Now I'm afraid I'm going to mess it up but it was nice to come home to a clean house. Plus there have been additional Christmas decorations added to create something of a festive atmosphere. I am very grateful for these angels.
Our afternoon consisted of a meeting with our team with Noah's Children. We were finally able to meet Dr. Archuleta, CJ's new primary care physician. Nurse Cathy and "the other Kathy" (our social worker) were also there. We shared our observations over the past few days as well as Charlotte's current medications and Dr. Archuleta had a chance to talk and interact with Charlotte a bit. By the end of the visit, we had discussed numerous options and ideas. While it is possible that some of her fatigue and symptoms could stem from "travel exhaustion", there was general consensus from all of us on the team that she has changed in the past two weeks (and most definitely in the last few days). Most likely, this is due to progression of the disease.
Dr. Archuleta wants to alter her steroid dose for a few days to see if it changes anything. In addition, he has given us a prescription for morphine (a very low dose) to hopefully regulate any pain she is experiencing as well as some of her breathing difficulties. We are discussing more and more what our options and plans will be when the time comes. Man, this sucks.
The team is returning on Thursday to reassess our needs and Roger and I will actually spend a good deal of time with Kathy to talk about some of our wishes for Charlotte once she passes. It is so surreal to have these kind of discussions. I can't even explain it. It's like an out of body experience.
After the team left, Charlotte watched some TV and hung out with Uncle Kolbey for a bit. I tried to get a few things done (catching up on emails, unpacking a few things, etc.) before he had to leave for his concert at the HAAC.
Aunt B (Roger's sister) arrived at about 5 this evening and Charlotte got to spend a little time with her before she fell asleep. Those of you following us on Facebook know that Roger was trying to find out if Santa came through on the firetrucks already (those of you who live in Hanover County know what I'm talking about). Well, apparently Santa's visit to our neighborhood was last night, while we were flying over Georgia. Not to be deterred, our network jumped to the task and Meredith contacted the fire station about making an extra stop for Charlotte tonight. They agreed to stop by our house before the rest of their run at about 6:30 tonight. Of course, Charlotte fell asleep about 15 minutes before they arrived!! I tried to rouse her a bit to say hi to Santa but I think she was a little bit out of it. I am still grateful to the Ashland Fire Dept. for coming by! Thanks to Meredith for her help!
Roger actually went to work tonight. There was a FACES event and Roger and our RNR standby Anna went in to entertain the troops! He's on his way back as I type this. I think he is definitely ready to get back into the RNR groove.
Regarding the Reading Vigil AKA Reading to CJ: A few of you have contacted me via the website and/or email about reading to CJ. I just want to clarify. I am going to work on the "official" schedule. There will be probably be times blocked out when we are NOT available for reading. Otherwise, pretty much any time is open. When you email me, please do so through the website and please let me know the best times for YOU and whether you expect to stay one hour, two hours, etc. I have not updated the calendar and/or website yet but will do so by tomorrow. If you have contacted me, I will try to get back with you by tomorrow as well. For now, I think we will keep the reading to between 6 AM and 10 PM but eventually, it could be a 24 hour thing. It may fluctuate based on her schedule. If you are from out of town and want to SKYPE in via webcam, that is a definite possibility. Also, CJ does NOT need to be awake. Please be ready to read to her even if she is asleep. That's part of the plan. It also does not need to be strictly reading. We welcome music, songs, or anything kind of "mellow". It could also be visiting time. Please do not bring any gifts for CJ when you come to read. Your visit is a gift beyond measure. You may bring a special story to SHARE but not to leave. We also have many books here at your disposal.
Before I close, I want to share something specifically for our Denver network: a family that we met in Houston lives in the Denver area. They just returned from a four month stay in Houston and they are in need of pretty significant assistance. I know that we have a great network of friends and family in the Denver area who would like to help us. Well, I would like to make this family the first "unofficial" recipients of the CJSTUF goodwill network. I need one person from the Denver area who would be willing to act as point person and liaison for this family. I think right now, aside from the moral support, they need meals, financial assistance (fundraisers?), and some help caring for their other daughter while they deal with their sick daughter's (probably terminal) illness. This point person would contact the family (with my help), find out their needs, and then network with the rest of our Denver network to assist in any way necessary. We may use this blog and our website as a vehicle to assist them as well. If you live in the Denver area and think this might be the job for you, please email me personally at rachel@cjstuf.org This family has no family in Denver to help them. Knowing how much we have benefitted from our local network, I can only imagine what having local assistance will do for them as well.
I think that's it for now. I will sign off and wish you good evening. It's good to be home.
Sunday, December 13, 2009
Headed Home Soon
This has been a good few days. On Friday, we took the little girls (CJ and Tricia) to see The Princess and The Frog. It was fabulous with lots of great music and humor for all ages. CJ was entranced and Tricia fell asleep halfway through (it was just at naptime). Friday night we ventured over to Orlando for the first night of Hanukkah (Chanukah/Honika/CCHHHHanukah). My high school pal Kim was hosting a Latke Party at her house and it was very fun. Roger and I even spun the dreidel a bit.
Saturday, we decided that CJ liked The Princess and The Frog so much that we went for a second time. CJ even wore her Cinderella costume this time. I think we all still liked it just as much (if not more). The music is still floating around in my head.
Then it was on to my mom's house where we were joined by most of our family: my mom and stepdad, mom's sisters (my aunts), their spouses (my uncles), cousin Sarah, her husband John, their daughter Tricia, and my godmother Mary Ann. The only significant omissions were Kolbey (currently holding down the fort in VA) and cousin Gina (stuck in Seattle). We missed them but it was a good time had by all. The eating was GOOD. My Aunt Shelley did 99.9% of the cooking and it was a feast full of all the comforts of home: turkey, ham, the "family recipe" stuffing, mashed taters, kahlua sweet potatoes, cranberry sauce, green beans (gotta have something green), and pumpkin pie and assorted sweets for dessert. YUM!
After that feast, we all retired to socializing. CJ fell asleep in Granny's arms and after a while we retired to the condo. I didn't sleep well last night. I've had mixed feelings about returning to Virginia. I have definitely missed home but this has been such an enjoyable vacation. Roger is pretty much ready to go back to work and will probably resume many of his RNR duties during the next week or so. I'm still not sure what I am ready for. There's multiple reasons but suffice it to say that I'm just not quite there. Anyway, eventually I did fall asleep only to be awakened by CJ calling me at about 4:30 AM. she was up in bed and her diaper had somehow come undone so the bedding was all wet. I changed her and got her out on the couch and then set to cleaning the bed linens. About 6 AM I woke Roger so I could get another hour or so of sleep. Then we headed back to mom's house about 8:30 for breakfast.
Breakfast was an encore of last night's dinner and nobody complained! There was plenty of food and it was really good. We're not a family limited by the "rules" of what is or is not breakfast food.
The family hung out for a little while longer and then the S. Florida contingent said their goodbyes. The day was sunny (finally) so mom and I took Charlotte out for a walk in the neighborhood. Shortly after our return from the walk, Charlotte indicated that she needed to poop and wanted to lie down on the floor (this has become a regular habit). We tried to "get things moving" with belly rubs and leg pumps but after a half hour, nothing was moving. We had a pending appointment (which I'll get to in a moment) so we put CJ in the car and headed out, hoping for the best.
Our pending appointment was a lovely venture on a boat. Our family friends, Don and Joanne Hawkins, had invited Roger, Charlotte, and I to take a ride on their boat on the intracoastal so we headed down to Ponce Inlet for an afternoon journey. In true form, Charlotte fell asleep on the way there. She actually stayed asleep for the whole boat ride(!!) Roger and I enjoyed the experience, though. It was lovely to hang out on this boat with such lovely people. The weather was perfect and the scenery was gorgeous.
On the way home, Charlotte stirred a little but she definitely did not seem comfortable. We got back to my mom's place and tried to encourage "the poop". She laid on the couch for a while, dozing off and on. Finally, Roger held her for a while and she let go. It was a MASSIVE poop. Then she fell asleep again. She's been asleep off and on since about 2:15 PM (it's now 8:30) and she doesn't seem too happy. Not sure what she wants...
I think this is where we are headed. I feel like we've taken a turn in the process. Not sure where things will go from here, but as Roger and I have said before, our vacation could not have had better timing. So tomorrow we head for home. We will leave for the airport about 1 PM and we should arrive in Richmond (assuming all will run according to schedule) about 9:45 PM. SUPPOSEDLY a limo will be waiting for us upon arrival. I think even with all the gifts we've accumulated along the way, we are only going home with one extra bag and maybe one box mailed to the house.
Before I forget, a few "Read to CJ" requests have come in. I have not really responded to them yet but that will be first on my agenda when we get back. If you are one of the many who expressed interest in reading to our girl, please go to our website and click on the CONTACT US link. You can send an email directly with your availability or desired dates to read to our girl. We will start this on 12/16. We don't have many definite plans other than home health visits so we are probably pretty open. Visits from kids are welcome too.
So I bid farewell to our FLA friends and give thanks for the wonderful hospitality we have received from friends and family while we were here. To our Virginia friends: see y'all soon!
Saturday, we decided that CJ liked The Princess and The Frog so much that we went for a second time. CJ even wore her Cinderella costume this time. I think we all still liked it just as much (if not more). The music is still floating around in my head.
Then it was on to my mom's house where we were joined by most of our family: my mom and stepdad, mom's sisters (my aunts), their spouses (my uncles), cousin Sarah, her husband John, their daughter Tricia, and my godmother Mary Ann. The only significant omissions were Kolbey (currently holding down the fort in VA) and cousin Gina (stuck in Seattle). We missed them but it was a good time had by all. The eating was GOOD. My Aunt Shelley did 99.9% of the cooking and it was a feast full of all the comforts of home: turkey, ham, the "family recipe" stuffing, mashed taters, kahlua sweet potatoes, cranberry sauce, green beans (gotta have something green), and pumpkin pie and assorted sweets for dessert. YUM!
After that feast, we all retired to socializing. CJ fell asleep in Granny's arms and after a while we retired to the condo. I didn't sleep well last night. I've had mixed feelings about returning to Virginia. I have definitely missed home but this has been such an enjoyable vacation. Roger is pretty much ready to go back to work and will probably resume many of his RNR duties during the next week or so. I'm still not sure what I am ready for. There's multiple reasons but suffice it to say that I'm just not quite there. Anyway, eventually I did fall asleep only to be awakened by CJ calling me at about 4:30 AM. she was up in bed and her diaper had somehow come undone so the bedding was all wet. I changed her and got her out on the couch and then set to cleaning the bed linens. About 6 AM I woke Roger so I could get another hour or so of sleep. Then we headed back to mom's house about 8:30 for breakfast.
Breakfast was an encore of last night's dinner and nobody complained! There was plenty of food and it was really good. We're not a family limited by the "rules" of what is or is not breakfast food.
The family hung out for a little while longer and then the S. Florida contingent said their goodbyes. The day was sunny (finally) so mom and I took Charlotte out for a walk in the neighborhood. Shortly after our return from the walk, Charlotte indicated that she needed to poop and wanted to lie down on the floor (this has become a regular habit). We tried to "get things moving" with belly rubs and leg pumps but after a half hour, nothing was moving. We had a pending appointment (which I'll get to in a moment) so we put CJ in the car and headed out, hoping for the best.
Our pending appointment was a lovely venture on a boat. Our family friends, Don and Joanne Hawkins, had invited Roger, Charlotte, and I to take a ride on their boat on the intracoastal so we headed down to Ponce Inlet for an afternoon journey. In true form, Charlotte fell asleep on the way there. She actually stayed asleep for the whole boat ride(!!) Roger and I enjoyed the experience, though. It was lovely to hang out on this boat with such lovely people. The weather was perfect and the scenery was gorgeous.
On the way home, Charlotte stirred a little but she definitely did not seem comfortable. We got back to my mom's place and tried to encourage "the poop". She laid on the couch for a while, dozing off and on. Finally, Roger held her for a while and she let go. It was a MASSIVE poop. Then she fell asleep again. She's been asleep off and on since about 2:15 PM (it's now 8:30) and she doesn't seem too happy. Not sure what she wants...
I think this is where we are headed. I feel like we've taken a turn in the process. Not sure where things will go from here, but as Roger and I have said before, our vacation could not have had better timing. So tomorrow we head for home. We will leave for the airport about 1 PM and we should arrive in Richmond (assuming all will run according to schedule) about 9:45 PM. SUPPOSEDLY a limo will be waiting for us upon arrival. I think even with all the gifts we've accumulated along the way, we are only going home with one extra bag and maybe one box mailed to the house.
Before I forget, a few "Read to CJ" requests have come in. I have not really responded to them yet but that will be first on my agenda when we get back. If you are one of the many who expressed interest in reading to our girl, please go to our website and click on the CONTACT US link. You can send an email directly with your availability or desired dates to read to our girl. We will start this on 12/16. We don't have many definite plans other than home health visits so we are probably pretty open. Visits from kids are welcome too.
So I bid farewell to our FLA friends and give thanks for the wonderful hospitality we have received from friends and family while we were here. To our Virginia friends: see y'all soon!
Friday, December 11, 2009
Days On The Beach
As usual, the last few days have had their ups and downs. Mostly ups.
Grandpa (my dad) got in Tuesday and the three us met Rachel’s godmother, Mary Ann, and Bob and Phoebe Smith at a local Italian restaurant for dinner (Bob is the pastor who married us). Granny kept watch over CJ. The food was amazing and adult conversation was very nice to have. In the economically devastated area known as Daytona Beach, Florida, there are some very bright lights in the darkness. Aurelia’s is one of them. It’s back in the original location after forays elsewhere in the area and Aurelia (The owner), who is energetic and vibrant in spite of her age, still cooks all the food after all these years and comes around to all the tables to visit if she can.
We had a couple of “receptions” (for want of a better word) in the event room at the Caribbean (where we’re staying) on Wednesday evening and Thursday afternoon. People were invited to come by with books to read to Charlotte and nosh on goodies (mostly homemade by Granny). There were also custom made pink and purple M&Ms with Charlotte’s face printed on some as well as the phrases, “CJ ROCKS” and “THUMBS UP.” On Wednesday, I wheeled CJ, all dressed up in her brand new Cinderella outfit and looking FABULOUS to a spot next to some chairs with some good light overhead and left everyone else to pay attention to her. They did. Throughout the evening, many, many books were read to her and Charlotte loved it. There was this one duo of teenage girls who looked like typical teenage girls, wishing they were anywhere but there. I’m not sure of the back story but there was this discernable thawing of the façade the moment they met CJ. Charlotte was doing her typical thing and was telling everyone about Dora or Frosty or whatever was on her mind at the moment and charming the heck out of everyone. She started petering out right at the prescribed closing time and we headed back downstairs.
Thursday was sort of more of the same except that CJ’s completely screwed up sleep schedule had her up at 3:30am which means she fell asleep sometime after 1pm. The second reception was supposed to start at 2. I let her sleep until about 2:15, got her dressed in her other, non-winged Tinkerbell dress, and we headed up.
We made our fashionably late entrance and I parked her in the same place. I was worried she wouldn’t enjoy herself this time because she was still groggy from her nap but within a half hour, she was back in form.
During both events, there were several people from Rachel’s far distant past (former teachers, family friends, etc…) who brought some wonderful books to read. A particularly engaging rendition of Five Little Monkeys Jumping On The Bed was done by Karen Ricks. Charlotte was all into it, finishing every line and then telling everyone the finer points of monkeys and their activities.
After that, the family retired to our unit and had some dinner. CJ and Tricia ended up watching videos in CJ’s bed and eventually, Rachel and I left Grandpa in charge and went for a walk. It was chilly and very windy on the beach and before long my ears started hurting. I felt the need for hot tea so we ended up at the local Dennys which was actually open. Seems silly but with all the vacant property around, there doesn’t seem much reason to keep stores open past 9pm, even if Dennys is supposed to be 24hr.
Over tea and “pancake puppies” (very yummy, I highly recommend them!), Rachel and I had another one of THOSE talks. A “keepin’ it together” talk. We both always get a lot out of them and end up liking each other again afterwards.
When we got back, Charlotte was still awake and Grandpa was snuggling with her on the bed. We let him stay there and got a good amount of little stuff done (including getting a lot of photos onto the Facebook site). CJ ended up staying awake until 4:00 in the morning! We sent my dad to bed a bit after midnight and Mommy and I took our shifts. It’s now 9:20am as I write and CJ is still asleep. Her sleep schedule is sooooo messed up right now but it kind of doesn’t matter as long as the team effort holds out.
That’s one of the things that continually stays with me and I know I’ve said it before. We have such a great network and have rarely been left without help when we asked for it. What does a single parent do when this kind of thing happens? How about families with inadequate or no insurance? It boggles my mind. I’m really hoping we can make a difference with CJSTUF (or even with one of the many other wonderful organizations out there helping people out). I’m kind of counting on it.
A shout out to Annette who is taking some very well deserved time off on a Disney adventure of her own! Another shout out to Ruth Campbell and the other Mechanicsville Moms for organizing the Used Book Sale at RNR last night for CJSTUF. I believe a little over $350 was raised and they plan to repeat the event in March 2010.
CJ seems to be stirring so we will sign off...
Grandpa (my dad) got in Tuesday and the three us met Rachel’s godmother, Mary Ann, and Bob and Phoebe Smith at a local Italian restaurant for dinner (Bob is the pastor who married us). Granny kept watch over CJ. The food was amazing and adult conversation was very nice to have. In the economically devastated area known as Daytona Beach, Florida, there are some very bright lights in the darkness. Aurelia’s is one of them. It’s back in the original location after forays elsewhere in the area and Aurelia (The owner), who is energetic and vibrant in spite of her age, still cooks all the food after all these years and comes around to all the tables to visit if she can.
We had a couple of “receptions” (for want of a better word) in the event room at the Caribbean (where we’re staying) on Wednesday evening and Thursday afternoon. People were invited to come by with books to read to Charlotte and nosh on goodies (mostly homemade by Granny). There were also custom made pink and purple M&Ms with Charlotte’s face printed on some as well as the phrases, “CJ ROCKS” and “THUMBS UP.” On Wednesday, I wheeled CJ, all dressed up in her brand new Cinderella outfit and looking FABULOUS to a spot next to some chairs with some good light overhead and left everyone else to pay attention to her. They did. Throughout the evening, many, many books were read to her and Charlotte loved it. There was this one duo of teenage girls who looked like typical teenage girls, wishing they were anywhere but there. I’m not sure of the back story but there was this discernable thawing of the façade the moment they met CJ. Charlotte was doing her typical thing and was telling everyone about Dora or Frosty or whatever was on her mind at the moment and charming the heck out of everyone. She started petering out right at the prescribed closing time and we headed back downstairs.
Thursday was sort of more of the same except that CJ’s completely screwed up sleep schedule had her up at 3:30am which means she fell asleep sometime after 1pm. The second reception was supposed to start at 2. I let her sleep until about 2:15, got her dressed in her other, non-winged Tinkerbell dress, and we headed up.
We made our fashionably late entrance and I parked her in the same place. I was worried she wouldn’t enjoy herself this time because she was still groggy from her nap but within a half hour, she was back in form.
During both events, there were several people from Rachel’s far distant past (former teachers, family friends, etc…) who brought some wonderful books to read. A particularly engaging rendition of Five Little Monkeys Jumping On The Bed was done by Karen Ricks. Charlotte was all into it, finishing every line and then telling everyone the finer points of monkeys and their activities.
After that, the family retired to our unit and had some dinner. CJ and Tricia ended up watching videos in CJ’s bed and eventually, Rachel and I left Grandpa in charge and went for a walk. It was chilly and very windy on the beach and before long my ears started hurting. I felt the need for hot tea so we ended up at the local Dennys which was actually open. Seems silly but with all the vacant property around, there doesn’t seem much reason to keep stores open past 9pm, even if Dennys is supposed to be 24hr.
Over tea and “pancake puppies” (very yummy, I highly recommend them!), Rachel and I had another one of THOSE talks. A “keepin’ it together” talk. We both always get a lot out of them and end up liking each other again afterwards.
When we got back, Charlotte was still awake and Grandpa was snuggling with her on the bed. We let him stay there and got a good amount of little stuff done (including getting a lot of photos onto the Facebook site). CJ ended up staying awake until 4:00 in the morning! We sent my dad to bed a bit after midnight and Mommy and I took our shifts. It’s now 9:20am as I write and CJ is still asleep. Her sleep schedule is sooooo messed up right now but it kind of doesn’t matter as long as the team effort holds out.
That’s one of the things that continually stays with me and I know I’ve said it before. We have such a great network and have rarely been left without help when we asked for it. What does a single parent do when this kind of thing happens? How about families with inadequate or no insurance? It boggles my mind. I’m really hoping we can make a difference with CJSTUF (or even with one of the many other wonderful organizations out there helping people out). I’m kind of counting on it.
A shout out to Annette who is taking some very well deserved time off on a Disney adventure of her own! Another shout out to Ruth Campbell and the other Mechanicsville Moms for organizing the Used Book Sale at RNR last night for CJSTUF. I believe a little over $350 was raised and they plan to repeat the event in March 2010.
CJ seems to be stirring so we will sign off...
Days on the Beach
As usual, the last few days have had their ups and downs. Mostly ups.
Grandpa (my dad) got in Tuesday and the three us met Rachel’s godmother, Mary Ann, and Bob and Phoebe Smith at a local Italian restaurant for dinner (Bob is the pastor who married us). Granny kept watch over CJ. The food was amazing and adult conversation was very nice to have.In the economically devastated area known as Daytona Beach, Florida, there are some very bright lights in the darkness. Aurelia’s is one of them. It’s back in the original location after forays elsewhere in the area and Aurelia (The owner), who is energetic and vibrant in spite of her age, still cooks all the food after all these years and comes around to all the tables to visit if she can.
We had a couple of “receptions” (for want of a better word) in the event room at the Caribbean (where we’re staying) on Wednesday evening and Thursday afternoon. People were invited to come by with books to read to Charlotte and nosh on goodies (mostly homemade by Granny). There were also custom made pink and purple M&Ms with Charlotte’s face printed on some as well as the phrases, “CJ ROCKS” and “THUMBS UP.”On Wednesday, I wheeled CJ, all dressed up in her brand new Cinderella outfit and looking FABULOUS!, to a spot next to some chairs with some good light overhead and left everyone else to pay attention to her. They did. Throughout the evening, many, many books were read to her and Charlotte loved it. There was this one duo of teenage girls who looked like typical teenage girls, wishing they were anywhere but there. I’m not sure of the back story but there was this discernable thawing of the façade the moment they met CJ. Charlotte was doing her typical thing and was telling everyone about Dora or Frosty or whatever was on her mind at the moment and charming the heck out of everyone. She started petering out right at the prescribed closing time and we headed back downstairs.Thursday was sort of more of the same except that CJ’s completely screwed up sleep schedule had her up at 3:30am which means she fell asleep sometime after 1pm. The second reception was supposed to start at 2. I let her sleep until about 2:15, got her dressed in her other, non-winged Tinkerbell dress, and we headed up.We made our fashionably late entrance and I parked her in the same place. I was worried she wouldn’t enjoy herself this time because she was still groggy from her nap but within a half hour, she was back in form.During both events, there were several people from Rachel’s far distant past (former teachers, family friends, etc…) who brought some wonderful books to read. A particularly engaging rendition of Five Little Monkeys Jumping On The Bed was done by Karen Ricks. Charlotte was all into it, finishing every line and then telling everyone the finer points of monkeys and their activities.
After that, the family retired to our unit and had some dinner. CJ and Tricia ended up watching videos in CJ’s bed and eventually, Rachel and I left Grandpa in charge and went for a walk. It was chilly and very windy on the beach and before long my ears started hurting. I felt the need for hot tea so we ended up at the local Dennys which was actually open. Seems silly but with all the vacant property around, there doesn’t seem much reason to keep stores open past 9pm, even if Dennys is supposed to be 24hr.Over tea and “pancake puppies” (very yummy, I highly recommend them!), Rachel and I had another one of THOSE talks. A “keepin’ it together” talk. We both always get a lot out of them and end up liking each other again afterwards.
When we got back, Charlotte was still awake and Grandpa was snuggling with her on the bed. We let him stay there and got a good amount of little stuff done (including getting a lot of photos onto the Facebook site). CJ ended up staying awake until 4:00 in the morning! We sent my dad to bed a bit after midnight and Mommy and I took our shifts. It’s now 9:20am as I write and CJ is still asleep. Her sleep schedule is sooooo messed up right now but it kind of doesn’t matter as long as the team effort holds out.
That’s one of the things that continually stays with me and I know I’ve said it before. We have such a great network and have rarely been left without help when we asked for it. What does a single parent do when this kind of thing happens? How about families with inadequate or no insurance? It boggles my mind. I’m really hoping we can make a difference with CJSTUF (or even with one of the many other wonderful organizations out there helping people out). I’m kind of counting on it.
A shout out to Annette who is taking some very well deserved time off on a Disney adventure of her own! A second shout-out to Ruth Campbell and the other Mechanicsville Moms. The Used Book Sale for CJSTUF raised over $350 last night. Word has it they are planning an encore in March 2010.
I think CJ is stirring so we will close this post...
Grandpa (my dad) got in Tuesday and the three us met Rachel’s godmother, Mary Ann, and Bob and Phoebe Smith at a local Italian restaurant for dinner (Bob is the pastor who married us). Granny kept watch over CJ. The food was amazing and adult conversation was very nice to have.In the economically devastated area known as Daytona Beach, Florida, there are some very bright lights in the darkness. Aurelia’s is one of them. It’s back in the original location after forays elsewhere in the area and Aurelia (The owner), who is energetic and vibrant in spite of her age, still cooks all the food after all these years and comes around to all the tables to visit if she can.
We had a couple of “receptions” (for want of a better word) in the event room at the Caribbean (where we’re staying) on Wednesday evening and Thursday afternoon. People were invited to come by with books to read to Charlotte and nosh on goodies (mostly homemade by Granny). There were also custom made pink and purple M&Ms with Charlotte’s face printed on some as well as the phrases, “CJ ROCKS” and “THUMBS UP.”On Wednesday, I wheeled CJ, all dressed up in her brand new Cinderella outfit and looking FABULOUS!, to a spot next to some chairs with some good light overhead and left everyone else to pay attention to her. They did. Throughout the evening, many, many books were read to her and Charlotte loved it. There was this one duo of teenage girls who looked like typical teenage girls, wishing they were anywhere but there. I’m not sure of the back story but there was this discernable thawing of the façade the moment they met CJ. Charlotte was doing her typical thing and was telling everyone about Dora or Frosty or whatever was on her mind at the moment and charming the heck out of everyone. She started petering out right at the prescribed closing time and we headed back downstairs.Thursday was sort of more of the same except that CJ’s completely screwed up sleep schedule had her up at 3:30am which means she fell asleep sometime after 1pm. The second reception was supposed to start at 2. I let her sleep until about 2:15, got her dressed in her other, non-winged Tinkerbell dress, and we headed up.We made our fashionably late entrance and I parked her in the same place. I was worried she wouldn’t enjoy herself this time because she was still groggy from her nap but within a half hour, she was back in form.During both events, there were several people from Rachel’s far distant past (former teachers, family friends, etc…) who brought some wonderful books to read. A particularly engaging rendition of Five Little Monkeys Jumping On The Bed was done by Karen Ricks. Charlotte was all into it, finishing every line and then telling everyone the finer points of monkeys and their activities.
After that, the family retired to our unit and had some dinner. CJ and Tricia ended up watching videos in CJ’s bed and eventually, Rachel and I left Grandpa in charge and went for a walk. It was chilly and very windy on the beach and before long my ears started hurting. I felt the need for hot tea so we ended up at the local Dennys which was actually open. Seems silly but with all the vacant property around, there doesn’t seem much reason to keep stores open past 9pm, even if Dennys is supposed to be 24hr.Over tea and “pancake puppies” (very yummy, I highly recommend them!), Rachel and I had another one of THOSE talks. A “keepin’ it together” talk. We both always get a lot out of them and end up liking each other again afterwards.
When we got back, Charlotte was still awake and Grandpa was snuggling with her on the bed. We let him stay there and got a good amount of little stuff done (including getting a lot of photos onto the Facebook site). CJ ended up staying awake until 4:00 in the morning! We sent my dad to bed a bit after midnight and Mommy and I took our shifts. It’s now 9:20am as I write and CJ is still asleep. Her sleep schedule is sooooo messed up right now but it kind of doesn’t matter as long as the team effort holds out.
That’s one of the things that continually stays with me and I know I’ve said it before. We have such a great network and have rarely been left without help when we asked for it. What does a single parent do when this kind of thing happens? How about families with inadequate or no insurance? It boggles my mind. I’m really hoping we can make a difference with CJSTUF (or even with one of the many other wonderful organizations out there helping people out). I’m kind of counting on it.
A shout out to Annette who is taking some very well deserved time off on a Disney adventure of her own! A second shout-out to Ruth Campbell and the other Mechanicsville Moms. The Used Book Sale for CJSTUF raised over $350 last night. Word has it they are planning an encore in March 2010.
I think CJ is stirring so we will close this post...
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