what.a.day

Today is a sad day for me...and a bit of a stressful one too!

I was able to get Harper into the doctor this morning, so after six days and $500 we have ruled out:
-pink eye
-influenza
-strep

But have assumed "rsv". Either way we are on the downhill slide, hopefully. So far we have not had a fever, yay harper :-) We had a long sit at the dr office, and am soo glad to be home! This is a slice of the stress.

The sadness comes from the fact that I had to miss the celebration of life for our "always a hero" 2008 Hero of Hope Tracy, who I have written about several times. The viewing was last night followed by a special luminaria ceremony held just for her, which included story time and snow angels. What an amazing event to hold in someones honor, what a pity to have missed. This morning I was sad again when it was time for the funeral service to start and I was unable to attend as well. My heart breaks knowing I was not able to be there in person - Tracy deserved such a different ending. Most people will only fantasize about leaving the legacy that Tracy actually left behind. As my friend, and fellow 2011 Hero of Hope, said - there is nothing more difficult to watch that a 30-something year-old man bury the mother of his two young sons. And she is right. Does anyone want to use this opportunity to tell me why they are too busy to relay?!

So while today is a sad and stressful day, it is a day of so much more than I can put into words.

I went into work to pick up a few things so I could work from home today, and on my desk sat $60+ of girl scout cookies! And because of this I reaffirmed that just as many bad things can create a whirlwind of a bad day....many good things can turn everything around!! I am off to sample of a few of my "good things" for today while the kids sleep and I catch up on work!! Thank you girl scouts for selling cookies...and thank you girl scouts mothers for helping to sell said cookies!! :D

Here is to a better tomorrow, and adios February...take all the sadness and stress with you!!

EDIT TO ADD:

3:37pm - I have had a total day turn around! After nap, while both kids were sitting on my lap Charli turned to me and said "mom, I do love you a lot, but I think I will always love harper more" My reply to her was "that is exactly how it should be honey, thank you for being the best big sister ever!" She said "but maybe that isn't nice to say mom, I love you the same". I reminded her that she will ALWAYS be Harper's big sister, so it is her job to take care of him...and that means loving him more than anything else in the world!! What a sweetie-pie. I think this afternoons nap was good for everyone!! :-)

welcome back, monday!

Have you ever seen a movie or tv show where mothering/parenting is stressful and then all of a sudden they are swept off their feet for a few days at the spa? I want that life! I am ready for outdoor play, sunshine, fresh air, and less germs. My mind has already said good-bye to winter, so the fact that it is still here is really messing with my life. ;-)

Charli and Harper seemed to really enjoy being at the new daycare this week. Having said that, I am sooooo glad to be returning to Lynn's tomorrow!! We -heart- Lynn! Harper ended his week with illness, which is always a good time. We've had an urgent care visit, calls to the dr, conversations with the PA, and lots of questions amongst ourselves. Today is a new day, right?!

Charli and I are hitting the movies this afternoon and the boys are going to the shop after Harper wakes up from nap...if he's feeling good! Sigh, I hope he is feeling better!!

I am not the girl who drinks cherry vodka. However, if I were - today would be a great day for a drink :-)

She found this hat from when she saw mickey with her cousins last fall, and was playing a combination between magician and animal trainer!

totally busted, he stole a toy from his sister! you would never know he isn't feeling the best! I am thankful that he is acting as well as he is. Now, if only we could get him to feel tip-top, sleep well, and get back to normal - life would be grand!

so these are the "Fun" games dad plays when he gets his hands on the vacuum...


harper could not stop fixating on the wand which just finished assaulting his hair. For those moms out there who rock the faux-hawk for their kids, I would like to say that using a vacuum gives great style, and it stays up for a long time!!

its so nice having kids who want to help! ;-)

this shot puts a smile on my face, simple happiness!

it looks like they are BOTH ready for the circus if you ask me!! I think it is safe to say that Harper's fever has altered his state of mind, and make him "unique" these last few days!

but in their moments of silence, these two still find time to steal smiles from each other. Charli has been mother-hening him all weekend by checking for fevers, and reporting runny noses, etc! Harper is eating it up...he might not always want all that he gets, but he does love her attention!

day in lincoln

I spent a fun day in Lincoln today, I was able to lobby at the capital for LB 436 in Nebraska. Because I know my mom will look I am posting a link to read a little about it!! :-)


http://hpne.wordpress.com/2011/02/22/nebraskans-meet-with-lawmakers-to-encourage-support-for-cigarette-tax-increase/

are their toys in heaven

Charli has had a lot of questions about heaven recently. She has asked if there are toys there, if you take naps, etc...and I am reminded of how great heaven sounds! It is with a heavy heart that I write about heaven today, as you may have seen below our dear ACS - Relay For Life friend/family member Tracy passed away this morning. She is who inspired me to want to tell Charli's story. I am in awe when I sit to see how she has touched so many lives. She will live on in those who knew her and those who have loved her dearly. Our fight will be stronger and harder with her in our hearts forever. So while I write this with a heavy heart, I am happy for her that she is finally pain and cancer free. Please pray for her friends and family, especially her two young boys who will have such a hole in their heart with her absence.

Tomorrow is the big day for "new school"!!! I am excited to hear all about it ;-)

mr. cool guy Harper has found a new past time, relaxing!

Charli's new way to watch cartoons!!

what a comfortable way to read a good book!! Harper is very attached to books right now, you will hardly ever see him without one in his hand!

Are you seeing a pattern in our house this weekend...we are laying around being lazy and just enjoying each others company!! Sometimes the weeks get too busy and hectic and we aren't able to slow down enough to see our kids in their prime. From week to week we can see them change and it reminds me how fast this time goes and how lucky ...scratch that, blessed, we are. As the "big race" is starting on TV Charli has been inspired to get all of her race cars out in the kitchen as well. If they manage to take all of her cars on 500 laps they will sleep great tonight!! :-)

heavy heart

Rest in peace Tracy Lingwall Harnly...you will forever be in our memories and hearts. You are now pain and cancer free, and we will honor you as long as we fight.

www.mycancerandme.blogspot.com

stop long enough to STOP

One of my friends recently posted something on her blog that I wanted to steal! It is the concept of a "stop doing" list. This is to take place of the traditional "to-do" list, and the premise is that a "stop doing" list takes more effort to make these changes. I have to admit, what a great idea!! In her post she challenged us to make our own list. It got me thinking of all the things I wish I could stop doing, which would better the life of myself and those around me! So, I am throwing it out there as a way to stay accountable. I would also like to encourage you to do the same!! If you don't have your own blog, post your list here!

#1. Stop telling the kids we are late in the morning. If we are late, it is MY fault and telling them isn't going to solve the problem!! In addition to this goal I am adding, stop saying "we don't have time to play, we are late". Ugh, do those words seriously come out of my mouth some mornings? The answer is yes. {insert sad face here}

#2. Stop taking "everyday moments" for granted. As I type this I watch Charli feed Harper...thinking nothing of it. Then realizing that in the moment it is a symbol of the love she has for him, that she wanted him to eat all his breakfast....and the trust he has for her to allow her to do so. May be a silly example, but it is the everyday moments that will make our life what it is not, not just those that are surrounded by bells and whistles.

#3. Stop thinking time for Chad and I will "come next week". I feel safe writing this here because I don't think Chad will read it! We are both aware that we need to continue to make time for "us", which is hard to do with already full days and weeks! But, my goal will be to set aside an afternoon or evening (whatever we can get a sitter for!!) and keep it in the schedule just as we would if it were a commitment to a friend or family member. Hmmm, check back with me on this one. I think the previous two goals will be easier for me than this one!

If you know me well, you know that lists are big to me! Without a list, most of my life probably wouldn't happen. I have lists at work, a list for volunteer activities, lists on my phone, lists for the kids each morning (mental lists, since they can't read YET, soon to be picture lists on their door!!!), and lists to get me through the week. Something like this makes sense for me. I challenge you to make a list. It doesn't have to be big, pick 1-3 things that you would like to make different...write it down, tell someone - post it here, it will make it real!

Good luck and happy "stopping"!!!

important reminder....

Please continue to check on Tracy's status as she continues her fight against breast cancer. She is a former (but always) Hero of Hope for Nebraska. If you are from the area you may remember she came to a meeting to tell us of her amazing story. She has two young boys who are wise and mature beyond their years.

I ask that you visit her site, keep her in your prayers, and fight even harder because of her...
http://www.mycancerandme.blogspot.com/

new places / new faces

Sometimes we need to learn from our babes and just sit back and relax a bit!! Harper is ready for bed when he gathers a pillow and blanket...crawls in the chair and just sits!















Some of my most fun times with Charli now-a-days is doing things that I can remember doing when I was little!! "how many times can I touch the balloon before it hits the floor"?! Harper likes the game too!













You don't always know what you will find when these two are quiet for a set period of time. Today this is what I found! They were sweet, Harper stayed this way for several minutes!! They are getting to be pretty good buddies most of the time!











Again....tired brother and loving sister! She loves to help him...guide him, and mentor him. He isn't always the biggest fan, but he generally lets her get it out of her system!
















cheese! As soon as I move my camera he runs to this spot and says "cheese"...after sitting for about two seconds he gets up to see the picture on my camera!! Charli has trained him well ;)

Our beloved daycare is making way to Hawaii today so next week the kids will be going somewhere new! We went for a little visit today so Charli would feel comfortable there next week. For about 1-hour a day they separate by age and do their own thing. That is the time we were there for today. I was surprised by how well Harper did with that. It is a catholic center, and it made me giggle to see Charli's face of "WHAT!!???!!" when they did a prayer and the sign of the cross!! She just looked around like, 'what are you guys doing'! We are not catholic, so that is a totally new concept! She did make mention later that she didn't know their prayer...maybe she will pick up on diversity a bit next week?! For today at least, Harper did far better than I was expecting. He was a super star with the change, and Charli seemed to be her normal (in these situations) quiet self. Hoping they feel comfortable next week...yet shy enough to stay on their best behavior :-)

Looking forward to our traditional pizza movie night tonight with a twist, we will have grandma and grandpa here too! Excited for a great weekend...hope you are too!

The Balance We Seek

Charli as a teacher...

About two years ago I was contacted by a nursing teacher at a University in PA regarding our blog. She found our blog and wanted to use our journey and experiences to help teach nursing students in her program. She felt that by introducing these students to life through the parent and patients eyes, they would be better providers. I think she is right.

She used a total 9 blogs and went back to the beginning of each story. She really got to know our kids, and so did her students. The project was recently finished and I got a final report back from her and her views on the experience through her dissertation.

I am humbled beyond words to have been able to participate in something like this. Charli has officially gone beyond anything we ever imagined. Through Charli's experience medical professionals have been and will be educated in a NEW way...resulting in better care for those they will serve down the road. What an amazing legacy for Charli to be a part of.

The following are pieces of the letter I received from the professor recently...



Dear Brenda,

At long last, I am happy to share the findings of the nursing study of your blog about your child’s cancer. I began reading your writing in the Fall of 2009 and completed the analysis in December 2010. The research was meant to explore your blog and others for important elements of the cancer care your child received and to attend in a meaningful way to your written expression of the experience.

I learned a great deal from reading your work and the comments you received. Since life changed so much over the course of your child’s cancer treatment, I marked time in three segments: the diagnosis, treatment and off-treatment phases. In each phase, I noticed these themes as common to many of the stories I read. Here are the elements of your stories I found most important.
o Uncertainty/uncertainty management
o Stress/stress management
o Burdens/Gifts
o Change/constants
o Public/private lives

For example, the uncertainty that came during the time when your child was being diagnosed had very different qualities than later, during treatment, when you may have felt a little more under control yet still lived every day with the uncertainty of the cancer’s return. Stories about managing the uncertainty and about managing stress were very instructive.

I found one common denominator in all the blogs that represented the stories of alternating negative and positive experiences. This became the title of the dissertation: “The balance we seek.” As I read and reread the blogs, this seemed to be the object of greatest desire. The effort toward balance between the five themes listed and their counterparts was one of the elements that jumped off the pages. For example, during some of the burdens experienced, gifts were seemed to be found. Many bloggers described learning of an inner strength they didn’t know existed until their child faced not just the illness but the discomforts and annoyances that came with its treatment. The good balanced the bad again and again.

One of the most significant burdens expressed by each blogger was what has been referred to by nurse researchers as “surplus suffering.” It has not been researched extensively, but I believe it needs further study and a plan of action. Surplus suffering, to me, is the suffering experienced in addition to that which comes with the illness and its treatment. Surplus suffering can be caused by family, friends, providers and the healthcare system. Even the bloggers seemingly satisfied with the treatment shared stories of friends or family who said unhelpful, even detrimental things; staff that treated family members impolitely or worse; and a healthcare system seemingly designed to confuse, aggravate and add injury to families already experiencing pain. Insurance company treatment is a category of surplus suffering that stood far above all else and should be researched in depth.

The purposes for writing were clear whether the blogger stated them outright or not. For some, the blog was a place to express things that were difficult or impossible to say in person. Writing seemed to be a way to reflect on events, feelings and changes over time. All the blogs seemed to have started as a means to keep family members and friends informed of events when telephone calling was ineffective for reaching large numbers of people. Writers used the blog to advocate for care for their child by reaching out to others in similar circumstances and to advocate for improvements in and funding for cancer research. Many used the blog to preserve memories, as an archive of the events, the changes in family life, and the feelings experienced. Another purpose for blogging was to explain to readers more about the decisions made on behalf of the child or about procedures and treatment events.

The comments from readers followed similar patterns of the themes and purposes listed above. It was easy to see how important readers were to the bloggers, especially in the entries by bloggers who made direct requests for more responses. Readers seemed to offer comfort, support, affirmation of feelings and a sense of community when families were feeling particularly isolated. In my report, I describe the contribution of readers as ballast, or a steadying effect, when bloggers’ feelings or events were off-balance.

I intend to share the findings of this research with healthcare providers, especially nurses, in professional settings. This may be in the form of research journal articles or in presentations at professional nursing conferences.

I am grateful for your willingness to share your stories with me. Reading them has changed me. It made me more determined than ever to improve care for children with cancer. May you continue to inspire, to be inspired and to be blessed with love.

I wanted to share this information with you, because YOU are the reasons I continue this blog! You loved Charli enough to care to follow her...you loved her enough to be vested in her well-being, and you loved her enough to stay with her after she was done with treatment. If there was no one here to read the blog, there would be no blog!! Thank you for loving our family, and this is just one more example of how special all of you are to our family!! THANK YOU!!!

what lucky girls!!

while creating this tonight I found a phrase that made me giggle..."God made us cousins because he knew our moms couldn't handle us as sisters!" How true it is!! I hear all the time from my mom "I think Charli could be Rachelle's daughter"!!

marriage and 4-year olds!

These are the types of conversations I overhear in my house...
DAD - Charli, do you want to get married someday?
CHARLI - No.
D - Well, someday you will want to. And, maybe you should marry someone rich.
C - No, I want to marry someone I love.
D - well, I guess your right...you can marry whoever you want. But, you have to introduce him to me first.
C - can we marry anyone we love?
D - yes
C - Can you marry girls?
D - not in Nebraska you can't.
C - Well, I love grandma. Can I marry her?
D - No, you can't marry grandma.
C - That's okay dad because I want to marry you!!

Charli took her job of making valentine's day treats very seriously!

after frosting she put on the sprinkles very carefully!

taa-daa!!

then it was time to be silly with a monkey face!!

pretty young thing!

airplane!!!

so much taller when daddy does it, mom has short legs!

Charli couldn't wait to give Chad his Valentine's Day gift!! She knew he would probably share with her, and realized that if she waited until tomorrow night it would probably be too close to bed to get to eat the candy!! It's tough when they start to out smart you at 4!

Enjoyed our 70 degree day today with a walk outside and time on the porch swing - these days make summer look so GREAT!! Dear Summer, you can't get here soon enough.

Being a mom means constantly telling your child "I Love You", because it is the most important thing they need to hear.

Being a mom means knowing that boys and girls should be treated the equally. But differently.

i forgot I could count this high....

counting my blessings, all the way up to 70.2!!!!!!!!!!!

being a mom....

Being a mom means realizing everything you do will impact the sixteen-year-old your child will become.

We had a great Saturday today. The four of us were together from start to finish...which doesn't happen often! The kids slept late today, and Chad was home from work early. Because of this we spent the entire Saturday together. I can't remember when that happened last. We started with a trip to Wal-Mart after breakfast to buy the kids a picnic table, some car shopping, lunch, naps, walks outside, and reorganizing the house!! We got a lot done today and that probably explains why I was ready for bedtime to come tonight!

he was moving this box with the picnic table still inside of it! When he was on the other side and it started to tip, he used his head to balance and push it back up!!

we found this spider-monkey in the box..what a surprise that was!

and it wouldn't be a typical moment without monkey-do tyring it as well!!

great helpers...pretty sure Chad would still be working on it if it wasn't for their help!!

I am not sure this is the way the table is intended to be used??!

very excited to eat lunch here today!! Notice the dinosaur grilled cheese?! something about shaped food just makes it so much better! Perhaps I will start cutting my salads into flowers to see if that helps?!!

When Charli was in treatment I used to say "as long as we have more good days than bad we can call this a success". But that is true for all of us. Life is a marathon, not a race...we all know that. I am all too guilty of making too big of an issue of the "bad" days but not equally celebrating the good days. The truth of the matter is that the good days way out number the bad in our house...we have been blessed. Sometimes these kids make bad days better...and to be honest sometimes they make bad days worse! :-) But they DO make our life what it is!

Being a mom means recognizing that when your child misbehaves, it is because they desire something from you.

"Real strength is not just a condition of one's muscle, but a tenderness of one's spirit"

-McCallister Dodds

ziggy-wow-wow

We enjoyed the health while it lasted -- and now are fighting colds, which is better than the stomach flu if you ask me! However, Charli does not like "this kind of sick" she said!

The kids have been having a lot of fun playing together and are enjoying learning their boundaries with each other. Some days this is easier than others! It is SO much fun to listen to them laugh together, one of the best sounds on earth! Charli is a total mini-mom to Harper. She can buckle him in his seat to eat, put his bib on, fed him, clean his hands/face, put his coat and hat on in the morning and has even done her best at a few diapers! She protects him more than she teases him...for now ;-)

Both of the kids got their hair cut this weekend. Harper's shaggy hair was really growing on me, but I guess it was time to trim it up and take a look at his ears again!