Friday, November 28, 2008
Life Offers its Wisdom Generously. Everything teaches. Not everyone learns. Life asks of us the same thing we have been asked in every class: “Stay awake.” Pay attention.” But paying attention is no simple matter. It requires us not to be distracted by expectations, past experiences, labels, and masks. It asks that we not jump to early conclusions and that we remain open to surprise. Wisdom comes most easily to those who have the courage to embrace life without judgment and are willing to not know, sometimes for a long time. It requires us to be more fully and simply alive than we have been taught to be. It may require us to suffer. But ultimately we will be more than we were when we began. There is a seed of a greater wholeness in everyone.
My Grandfather's Blessings
by Rachel Naomi Remen, M.D.
(a Great book, btw)
Wednesday, November 26, 2008
Happy THANKSgiving my friends
When troubles come your soul to try,
You love the friend who just stands by.
Perhaps there's nothing she can do,
The thing is strictly up to you.
For there are troubles all your own,
And paths the soul must tread alone.
Times when love can't smooth the road,
Nor friendship lift the heavy load.
But just to feel you have a friend,
Who will stand by until the end.
Whose sympathy through all endures,
Whose warm handclasp is always yours.
It helps somehow to pull you through,
Although there's nothing she can do.
And so with fervent heart we cry,
God Bless the friend who just stands by.
- Author Unknown
Sunday, November 23, 2008
Jack's Sleep Study Report - Jack's neurologist faxed me Jack's sleep study report and the results show "Excellent oxygenation, sleep quality and continuity."
MY sleep study should be so good. I can assure you that my sleep is seriously lacking in both Quality and Continuity! At least one of us is sleeping well at night.
They did suggest lowering his rate a bit because his end tidal CO2s were running in the low 30s (which is too low). I thought he was a bit over-ventilated, which is now confirmed. Overall, his vent settings are perfect and he is doing "excellent" (for a kid on a vent.)
My Visit With The Periodontist- I found out that the tooth that was causing me so many problems the week we were in St. Louis is not salvageable, so it was pulled last week. Let's just say, it was the worst dental experience of my life and I will not be returning to the same "specialist" to finish the job. I have a fairly high tolerance for dental work and pain, but this guy must have been trained by the Nazis. Personality-wise, he was a nice guy. Technique-wise, not so much so. I might just say to heck with it and live with the "Hillbilly" look.
Okay, not really.
The Cruise - Thank you all for encouraging me to go. I'm still hoping to find someone to go with me. One of Jack's doctors (who I've become friends with) said she'd go with me, but then she found out she has call the week of the cruise and she doesn't think she can change it. That really bummed me out because I would love to go with her.
I will know some people on the cruise because friends of mine from college and their kids are one of the groups performing (it's an "All Star Irish Cruise"). They are Irish dances/fiddlers who made it to second place in the first season of "America's Got Talent". Check them out here: Celtic Spring.
If I decide to go, I also plan to see one of Jack's former docs who now lives in Puerto Rico (which is one of our stops along the way.) I'm just really struggling with being away from Jack for so long, especially if I'm only going by myself. If I was going with someone else, I feel like I could justify it more. Anyway, if it's meant for me to go . . . I'll go.
More Irish Dance - this weekend was the "big" Irish dance competition of the year - the Western US Regional Oireachtas. The top dancers in this competition go on to the World competition in Ireland. Mary doesn't have a competitive bone in her body - she dances for fun, not necessarily to win. Of course, this just kills me because I'm just the opposite. Not that Mary doesn't like to win, she just doesn't like to practice.
Little known fact - I played the accordion as a kid and would compete every summer in Los Angeles at the a regional "Accordion Festival". I know, I'm a geek. But, I was pretty good. I practiced and I played to win!
and just in case you doubted me . . . . .
Wednesday, November 19, 2008
It's a good thing I started the week off "relaxed and rested" because I refer you to last Thursday's post to get a sense of how I'm feeling mid-week. I can't seem to shake the feeling of being Overwhelmed. I really don't have any particular reason to feel so stressed. Everyone is healthy, doing well (just don't ask me about Hilary's progress report) and no major events are planned (if you don't count Thanksgiving and Christmas.) Is it that I have to actually Be overwhelmed to feel Underwhelmed? When I don't have any real reason to be stressed, I think my body creates its own stress because it doesn't know how to react. I think I'm Addicted to stress. I swear, I need
to drink more therapy.
I'm signed up to go on a 7-day Caribbean Cruise in February. The person who was supposed to go with me informed me she can't go now and I haven't yet been able to find a substitute cabin-mate. While the thought of spending seven days All.By.Myself sounds appealing, I'm not sure I can do it. How can my body possibly handle seven straight nights of eight hours of uninterrupted sleep, relaxing on the deck of the ship, reading, writing, eating, drinking, walking along the beaches of Grand Turk, Puerto Rico, St. Croix, and the Bahamas? I think the lack of stress will Kill me!
Seriously, I don't think I can do it. I have to make a decision soon because I need to book my flight to Florida. I just can't decide. I know . . . I'm nuts. Certifiably.
Sunday, November 16, 2008
My personal calendar was atypically full this weekend and what a fun change of routine! I went to a friend's 50th birthday party on Saturday night. I had breakfast with a friend this morning and then met another friend for an early dinner this evening. I pretty much ate my way through the entire weekend. I'm feeling just a wee bit guilty that I was gone so much, but when your friends ask you to come out and play . . . you just gotta say yes!
I'm feeling relaxed, rested and ready to tackle another week. Wishing the same for all of you.
Tuesday, November 11, 2008
For my friend Tess -- here is the video: Dear Future Physician (I think I recorded myself no less than 50 times reading the letter before I got a version I was somewhat happy with).
I've been asked by a couple of people how the TouchStones of Compassionate Care program is going so I thought I'd give an update.
To date, I have three hospitals implementing the program in one form or another. One former PICU Intensivist who cared for Jack is now the Director of Critical Care Medicine at Children's Hospital of Los Angeles. He told me he plans to use the video and has been circulating it around CHLA. He didn't sign up for the TouchStones. Jack's neurologist at St. Louis Children's Hospital told me that she shared the information about the program with someone at SLCH (I don't remember who) and that SLCH is now using the video as part of its intern/resident training. SLCH didn't sign up for the TouchStones either.
The Director of Critical Care Medicine at Johns Hopkins (another former PICU doc who took care of Jack) is the one person who has been willing to implement the program using the TouchStones. She gave me an update last week to let me know that they would be rolling out the program this week with the PICU residents. The plan is to meet with the housestaff during this PICU orientation, give a copy of my letter and give each of them a TouchStone. At the end of the month, they will talk with the residents to see if the TouchStones made a difference. They will compare that with the feedback from residents from July-October who never received the TouchStones in-service. I'm not sure if Hopkins will be using the video.
I've sent information about the program to a couple of other physicians I know at different Children's Hospitals around the country, as well as a couple of physicians that other people recommended I share the program with. I've not received any response from any of those individuals.
Fortunately, Jack has/had some really great doctors care for him who have been willing to give the program a try. To be honest, I will be happy if the only thing that is ultimately shared is my letter and the video because I believe those alone are "cause for pause" for our future physicians. That being said, I do think the TouchStones are really cool (see picture at top) and I'd like to believe that they do serve a purpose. But, I'll have to wait to hear the feedback from Hopkins to know for sure. Obviously, an endorsement from Hopkins would open a few doors. Also, both SLCH and CHLA are in the top ten Children's Hospitals in the country, so their endorsement is likewise significant.
Initially, I thought of targeting medical schools with this program, but based on who has been willing to try the program and the fact that my letter and the video target future Pediatric physicians, my plan is to initially just share the program with Childrens Hospitals around the country.
Right now, I'm in a bit of a holding pattern until I get some feedback from those who are using the program. However, I'm always open to receiving the names of physicians or other contact people that anyone thinks might be interested in the Program. Feel free to email me if you have someone in mind.
One thing you should know about me, I'm okay doing things on a small scale, making a difference one "starfish" (if you will) at a time. I'm not saying I wouldn't love for this program to grow into something that is recognized and sought out by Childrens Hospitals. However, I'm not going to give up just because it's not "BIG" from the get go. I'm a firm believer that if it's meant to be, it will happen -especially if you've got the right people on your side. And I've got some really good people supporting me in this program.
That is the latest and greatest update on the TouchStones program. I'm cautiously optimistic that this program will be a success!
Sunday, November 09, 2008
We celebrated Jack's birthday on Saturday. It was fun!
Here are some pics ~
(does Jack not have the coolest room?! We can never thank the Room for Joy people enough for giving Jack this gift. Hard to believe it's been almost a year since he got his room make-over)
Remember to enjoy the moment ;-)
Thursday, November 06, 2008
This week I'm feeling Overwhelmed. Overwhelmed with emotions, deadlines, time crunches, opinions and demands.
While I truly am okay with this life I've been
forced chosen to live, let there be no doubt that there are, and always will be, moments of profound sadness over what has been lost. Jack's birthdays are tough and putting my feelings into words in Jack's birthday letters is always extremely emotionally draining.
Not to worry though, I'm coming out of my annual "birthday funk" and I'm ready to celebrate all the good that IS in Jack's life. Starting with his birthday party this weekend!
The overwhelming demands of work are really starting to catch up with me. I'm not sure how much longer I can or want to keep up this pace. I just can't seem to catch my breath. Today I was filling out paperwork sent to me by a new dentist I have an appointment with on Monday for the tooth that was bothering me while we were in St. Louis. I'm seeing a specialist because it looks like I'll need extensive (and expensive) work done on the tooth. One of the questions on the patient questionnaire was "are you under extreme tension?" You think?! The picture above isn't too far off on how my desk looks - or at least my perception of how my desk looks!
But of all the emotions I'm feeling this week, the most overwhelming one is of Gratitude for all the wonderful blog comments, emails, text messages, cards and phone calls that were written, sent and received. Thank you all very much for caring about the special little boy who is by my side, leading me . . . every day . . . in every way.
Tuesday, November 04, 2008
Today we celebrate 10 years of Jack. That’s a lot of years in “Jack” years! Every year since Jack’s 5th birthday I’ve written a birthday letter sharing my thoughts about Jack, about myself, and about this journey we are on. Each year’s letter has its own unique tone, largely a reflection of the events of the past year. As I reflect on this somewhat of a milestone 10th birthday for Jack and think about where we started and where we are today, it’s tough to acknowledge that not much has changed in ten years for Jack. Yet, if I allow myself to stand back and look at the whole picture and not simply focus on Jack’s progress, I recognize that despite all the difficult times and lack of progress over the last ten years, I really am very fortunate. Jack has spent minimal time in the hospital since his discharge from the PICU in 1999; we continue to have good health insurance; we have nurses who are dependable and who truly care about Jack; Jack is happy; I have three other seemingly well adjusted and happy children; I am still employed and I am still married. Yes, I have much to be grateful for. Ten years into this journey and I can finally declare . . . it.is.okay. Not easy, not a life I would have chosen, but definitely okay.
Some of you are probably wondering, who is this person? Ironically, I’ve been told by more than one person this last year that I have “mellowed”. To quote one person, I have “mellowed beyond description”. Initially, I wasn’t sure if this was a good thing. Does my lack of intensity mean that I have given up on Jack? Should I be pushing him harder or doing more? Yet, I can say with confidence that “no” I have not given up on Jack, and “no” there isn’t more that I need to be doing. I finally get that all Jack ever needed from me was to be loved. I recognize that my relentless pursuit of progress was never really about Jack, it was about me. It was about what I wanted, not what Jack needed. I’m done pushing Jack to be anything other than who he is. It’s no longer about where I can lead Jack; it’s about where Jack is leading me. And, oh the places we are going!
Jack and I approach the next decade with the resolve to use what we’ve learned these last ten years to reach out to more parents of medically fragile children through The Willow Tree Foundation, and to reach out to our future physicians through a new project - Touchstones of Compassionate Care. What a privilege it is to make a small difference in this world together with one special little boy by my side. A little boy who leads me well without ever uttering a word.
Finally, to all of you who have been in the trenches with us over the last ten years - keeping Jack healthy and keeping me sane …. THANK YOU! We couldn’t have made it this far without each and every one of you.
In closing, I share with you a short montage - “10 Years of Jack and Mom”. Enjoy!
Oh, just one more thing …. in case there is any doubt, I can still be intense when I need to be. :-)
Sunday, November 02, 2008
Eric had been playing a game on Mark's cell phone earlier today. Later, when Mark couldn't find his phone he asked Eric to try and remember what he did with it. Eric's response:
HOW am I supposed to think BACK when I'm trying to think FORWARD?
(and believe it or not, I actually paid someone to cut his hair! What's with the crooked bangs?)