Life Updates

Patience is a Virtue

William Langland said that in a poem in the 14th century and we still say it today.  So, it has stood the test of time.  But, it doesn’t mean it is easy to uphold that virtue.  I guess it is defined as “moral excellence”  for a reason.  Tonight, I am a bit short on that virtue.  I am typically a very patient person, but at times, I reach a level of frustration and anxiety and tension that makes me want to scream.  I have reached that level tonight.  And for no real good reason at all.  Overall, today was a good day.  A long day, but a good day.

We drove to my sister’s house last night and stayed the night, allowing us to get up at 4:45 this morning instead of 3:30 a.m. to get to Bean’s heart clinic appointment in Stanford by 7:15 a.m.  My sister was nice enough to go with us, so we got to use the carpool lane and we made it a little bit early even.  The appointment went really well.  All looked good.  I was surprised to learn that her pacemaker is pacing her upper half of the heart 22% of the time and her lower half 9% of the time.  In all honesty, I thought it might just be a precaution and it wouldn’t pace very often if at all.  But, it is pacing almost one quarter of the time!  It is set at 70, so dropping into the high 60s will cause it to pace.  But, still.  A little surprising.  The doctor also said that a transplant may be done before a valve replacement if the right side of the heart becomes overwhelmed by the regurgitation.  So, there’s that on my mind.  Hell, my tension and lack of patience tonight may all be part of a little PTSD that kicks in even when we hear good news, because it often is followed up with disconcerting news (pacemaker is working great and Bean’s health looks great, BUT it is having to be used 22%/9% of the time; the regurgitation does not seem to be increasing or causing her heart issues, BUT it could get worse and could require another open heart surgery for either a valve replacement or a second transplant).  It is a lot to take.  I want to be happy, but it is also tempered.  I’m also exhausted.

In addition, I am feeling overwhelmed again.  I feel like everything in my life happens just a little later than I need it to.  I feel like I wanted so much more done at this point – on my housecleaning and organizing, on my class prep for Fall (good Lord, it starts in just four short weeks), on my finances, on my life in general.  My DH comes home in three days after being gone for five weeks and I feel like I’ve accomplished little-to-nothing.  My birthday is on Sunday and I’m feeling like I don’t even want to celebrate.  I realize this is probably temporary and things will look better when I get up tomorrow and I’ve slept longer and better than last night, do not have to face medical appointments and have two days to get some things done (well, three really because my DH doesn’t come home until Saturday night pretty late).  I need to be productive, not procrastinating. I need to get my #!*^ together.

But, I also feel overly tired and lacking in energy and motivation.  What do you do when it all seems a little overwhelming?  I would love to hear some ideas.  I only have a few more days until my Year of Fun kicks off and I need to get over this feeling of BLAH and FRUSTRATION in order to really have some fun.  I know part of it is probably diet and lack of exercise and who knows what else…

Five Minute Friday

Five Minute Friday -News

I am once again joining up with Five Minute Friday over at Kate Montaug’s blog.  They have some great deals and even a giveaway this week, so be sure to check it out and join us if you so desire!

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This week’s prompt is “News” – so, here goes:

News – it is a multi-meaning term.  There is the daily news that shows up in the headlines of newspapers and the evening news.  Then, there is our own “news” that includes life changes and such.  I often enjoy reflecting on the daily news, but it is also depressing at times.  I think that sometimes my own news is the same way.  I enjoy reflecting on it and trying to make improvements, but other times, my news is more depressing than anything else.  Right now, I’m feeling pretty good about the reflections on my own life.  Nothing is perfect, but then it never is.  But, things are moving along relatively nicely.  I’ve been talking to a lot of people about my DD’s pending pacemaker placement and they all seem like they are shocked I am not more worried or upset.  It makes me wonder if I’m not reflecting enough.  If I’m burying things.  But, really, I think that I’ve heard so much WORSE news at points that this news seems relatively positive in comparison.

I also think that I’ve come to realize that I can deal with things that come flying my way.  And that confidence is based on past experiences.  It is built on trust in God, trust in myself as being capable and trust in others who are responsible for things like my daughter’s medical well-being.  Probably in that order…

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What about you?  What do you think of when you hear the word “news”?

Thankfulness Challenge, Uncategorized

365 Days of Thankfulness – Day 25

Well, I’ve missed another few days.  Everday blogging is not an easy venture!  It seems like it would be easy, but it really isn’t.  I’m going to try to make this quick so I get it posted as every time I leave a post partially written, I never get back to it, so I now have a bunch of drafts…so, completion is the goal!

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Today, I am thankful for the news we got yesterday that, for now anyways, there are no heart surgeries in our future.  Although my DD’s tricuspid valve is still leaking and her heart is getting larger because of it, the pressures are good.  And since she doesn’t yet have any symptoms from her bradycardia issues, the team of doctors they brought together to discuss her case last week has decided that there is not a need currently for a pacemaker or a valve replacement.  So, for now, we are simply holding steady and hoping that she doesn’t have any symptoms for a long time to come.

I didn’t really know how heavily the thought of that was weighing on me until we got the news that they would NOT be doing any surgeries. I realized that I have been stressed for weeks about the possibility of another open heart surgery with the hospital stay and the long recovery and the emotional toll that it takes on us.  Obviously, it will come at some point in the future, but I just wasn’t quite ready for it now.  So, I am thankful for the delay.  I hope that her heart continues to work “good enough” for years, but I will begin to prepare myself for the alternative should it come sooner.

Uncategorized

Twis the Night Before Christmas…

Christmas_Eve_puzzle_with_Grandma.

Well, tomorrow is our fifth Christmas with that little miss in the picture.  And it is quite amazing that my mom, also in the picture, is here for it.  I cherish the time that Bean gets to spend with her Grandma because my mom’s cancer is a constant threat.  She is not feeling well much of the time.  Almost constant nausea (she has cancer around the duodenum area and I think that causes her a lot of discomfort), badly hurting back, and she has horrible anxiety and weakness.  But, she is with us.  She gets to do a puzzle with Bean, drive around and see Christmas lights with us, etc.  We have never been a family strong on tradition or celebration, but with a daughter and mother who, in many ways, really should not be here (20 or 30 years ago, neither of them would be – cancer treatments and heart transplants have come a long way in that time), I feel like it is of the utmost importance to celebrate what we can when we can.  My Christmas could be prettier, cleaner and less frustrating, but it could also be a whole lot lonelier.  I’ll take the mess and the frustration and the exhaustion.  So, my Christmas gift is captured in that picture above.  Tomorrow we will focus on gift giving and receiving and eating, but I will try to focus on the gifts we’ve already been given.

Settling for Satisfied, Uncategorized

Giving Thanks and Expressing Gratitude

Give thanks. Give life.

 

Thanksgiving was good yesterday.  Settling for simple definitely worked.  It wasn’t perfect, but it was very enjoyable.  My in-laws drove back a day early today because there was a big rain storm coming in (it is here now and we’ve had some much-needed downpours).  So, we now only have one house guest left (an ex-student of my husband’s who could not go home to Minnesota for the holiday) and it is blissfully quiet around here.

I did want to publicly give thanks for something very special.  For those who may be relatively new to this blog, my daughter received a heart transplant at 5 months old.  She is now 5 years old and is thriving.  Although we wrote a letter to the donor family, we never heard back, which I can understand.  But, I like to publicly thank that anonymous donor family and all donor families out there on these holidays when it must be especially tough to miss your loved one.  We are so very grateful that we have had five years with our beautiful daughter that we would not have had without that anonymous gift.  So, please, give a prayer of thanks or send out positive thoughts to all those who have lost someone.

If you have not already done so, please consider registering as a donor.  Not all children are as lucky as my daughter.  And many, many children and adults are waiting in a hospital room for the chance at a new, healthier life.  It is pretty simple to register – just visit Organdonor.gov and type your state in the upper right hand corner.  It will give you instructions for your state.

Thanks for reading, thanks for registering and thanks to our donor family for giving us the gift of life for our daughter.

 

Uncategorized

Happy Heart Day #5

I thought in honor of my DD’s heart day (the day she received her heart transplant and was given her second chance at life, only five short months after being born), I would take a photographic walk through the last five heart days…and, as always, her donor family is in my heart and mind today.

July 8, 2009 - heart day pic

Because she spent most of July 7 in surgery, I don’t have any pictures.  But, here she is on the morning of July 8, with the myriad of medications and the bandages on her chest (they read 7/7/09 as they mark each bandage with the date it was placed).  She was giving what some said was her “I’m #1” hand signal.  🙂

Here she is after our big one year “Transplantiversary” where we had balloons, cake and friends over.

Transplantiversary #1

And, heart birthday #2 at my in-laws in Bakersfield…she grows so much each year:

Heart Birthday #3 (day after)

And heart birthday #3 in 2012:

Heart Day #3

And last year:

heart day 2013

And finally, here she is five years post transplant, with one additional heart surgery and many, many biopsies and a tonsillectomy/adenoidectomy, a ton of X-rays, IV pokes, blood draws, a few bouts of pneumonia, and a whole lot of other things.  But, she is thriving and she brings so much joy to my life!  Please send some prayers to the donor family and please register to donate your organs if you have not already done so!

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Six Word Saturday

Six Word Saturday

Our miracle month is upon us.

July is my miracle month.  Five years ago on July 7, my daughter received a new heart after only 30 some days on the organ waiting list (which is a very, very short time for a baby).  She recovered from the transplant quickly and was able to come to live with us at the Ronald McDonald House on July 25, one day after my birthday (best birthday present ever and can’t really be topped).  So, July is a bit of a special month for us.

I can’t believe it has been five years, but in many ways it seems like a lifetime.  We have a heart clinic visit later this month and I think I will take a cake to the appointment for all the heart transplant team (or some cupcakes since there is a Sprinkles right across the street from the hospital).  I may look up something we can do relatively easily to take to patience in the CVICU as well.  It is sometimes hard for me to get these things together, but I really want to be able to do it this year.