Something new, something used, something special….

How many of you have read the chain e-mails that go around telling of stories of people who were “saving” things for just the right time – and that time never came before they passed? I have received many of them – it was an ah-ha moment when I read them, but not sure I ever really changed my ways. I said I would. I thought about what I might be saving – always landed on the idea that I was doing just fine, and kept going on my merry way.

Peter has tested that reality from the moment he was born! We never knew if we would have another day. But, when it seemed we overcame all thrown at us, we fell back into our “normal” routine.

Many years ago my family gave me a beautiful set of dishes. Each birthday and Christmas they added to the set. A thick, heavy set of white ceramic dishes with blue and yellow flowers. I was ready to change my kitchen around these dishes – I loved them so much! I cherished them and kept them safe – bringing them out for only the “really” special occasions. Instead of enjoying the them, I fretted about a little one dropping and breaking a cherished dish. And we’ve had a steady string of little ones. I would not have anything to pass down if the dishes were all broken! So safely they stayed put in the buffet.

Then came the Leukemia and weeks of Peter on the ventilator. I pulled out my “nice dishes”. Every Sunday we use them – our reserved “family day” – when we enjoy an extra nice meal together. I was throwing caution to the wind and enjoying right?! Well, yesterday G challenged me to think even further outside of my comfort zone.

Those who have been following our CarePages for some time remember the shoe shopping experience with G where the only thing she would even try on were the bright pink party shoes with the bows. “OK G, we can make these your church shoes”. Yeah – right! G has a mind of her own. Like Jack several years back and the cowboy boots he even wore into the bath tub – G wore the shoes all the time! ALL THE TIME! Even after baths and putting on clean PJ’s, the dirty pink shoes went back on. Yesterday she played in the sand and her shoes filled up. As I took them off to brush away the sand stuck between her toes, I stared at her shoes.

Something new….became something used – very used! …..because they are something special. G didn’t try to extend the life of her shoes by wearing them only on Sundays. She didn’t keep them safely away from others. She loved them, enjoyed them, and used them every day. As they become scuffed, the bow started to come lose, and they were no longer shiny new shoes – she loved them even more – they were hers and she saw the beauty in the shoes that were part of so many fun memories. Like her dirty but well loved doll, these shoes enjoyed a full life – albeit likely short – they have experienced life to the fullest!

We never know how long or short life will be – and sometimes we can be like Peter and defy the odds while confounding those around us. If you are anything like me – you save, your protect, you keep your eye on the future to define the purpose of today. I won’t stop being me – I know I will always have my eye on my goals to define the purpose of today…..but I want today to be full of something special being really enjoyed before it is too late.

I talked to a counselor last week who shared with me her zip lining experience. Petrified to take the leap, someone told her to stare at the platform she was to land on. As she zipped through the air, the platform became larger and larger until her feet were firmly planted on it. “I had a goal – and I made it!!” she thought to herself. Then as those behind her joined the platform they excitedly talked about the mountain range on one side, the flock of birds in the sky, the size of the trees below them, the view of the water to the other side. She had a goal, she made it, but she didn’t enjoy the journey getting there because she was too scared.

She was scared of the journey, I was scared of “using up” that something special – so in our own ways we didn’t enjoy what we were blessed with. At the end of my life – when ever that may be – I want lots of “worn, scuffed, pink party shoes” that hold memories of fun had on the journey to the other side.

G’s well loved, well worn, pink party shoes full of wonderful memories.

What “something special” are you saving for that right moment? is that moment today?

xoxoxo

catherine

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Peter Update – Friday May 25th, 2012

Peter had his Oncology appointment….all went well! His ANC (absolute neutrophil count) was up to 1200, his platelets were great, and his red blood cell count was perfect. For all intensive purposes, Peter is right back where he should be…..but it took being off chemo to get there. He has started back up at 50% of his normal dosage. On Monday he will get 50% dosage of Methotrexate. We know that does him in, especially when he is still recovering from the Vincristine infusion. Next Friday Peter will go in for labs to make sure he is holding steady. Then the following week would be due Vincristine and Methotrexate….the perfect storm in Peter’s little body. Makes my tummy churn just typing it!

The team did access Peter’s port and took a lot more blood than normal. The Health Department called and said that what they found in Peter’s blood was actually the Type F (not type B) Haemophilus Influenza bacteria. They were worried about G being ok – she is doing great! The Augmentin that Peter is on should take care of anything. I still think it was contaminated blood – but heck, at this point we just aren’t taking any risks! Some of the extra blood taken was to determine if Peter “zero converted” when he got his vaccine. In addition, prior to being discharged, Peter had labs done to determine the levels of his immuno-globulin (I know I mutilated that!)…..and the good news is that it came back in a normal healthy range meaning he wasn’t any further suppressed than he should be at this point in treatment.

So where do we go from here? That is still in the works. Which yes, is frustrating for me! The fact is, as much as I would like there to be clear answers, there never are….so with a deep breathe I accept that. The immediate plan is chemo at 50% and watching him very closely. There were several options on the table – altering the amount of chemo he gets – decreasing some, possible increasing others, to find the “cocktail” that keeps the cancer away but doesn’t risk Peter’s life in the mean time. Another option is re-introducing a recovery agent – Leucovorin is what we have used in the past. The risk is that over using it can increase the chance of relapsing – so it would need to be just the right amount. As a result of the immunity levels being acceptable for Peter, putting him on monthly IVGG is off the table. So it is going to take a lot of watching Peter closely (labs) and tweaking things until we find what is right for Peter. His nurse and doctor will be at the Leukemia monthly conference on June 6th and should be discussing Peter’s case there too.

More prayers, more patience, more cherishing the moments we have together. Peter is having fun again – he is playful and enjoying the outside. What is amazing is that since bouncing back from this episode. he is sleeping well and has a great appetite…..and that doesn’t happen often! He actually ate one and a half baggies of Goldfish crackers……that is unheard of for him! Last night we had strawberries and whip cream for dessert….he wasn’t ready to try the strawberries but he ate a lot of whip cream!

Peter running in the land of dragons….at the stone yard picking out items for our back yard project.

 

So much more to still tell of Peter’s journey! We were all in agreement that Peter is unique, with all his medical challenges he is more sensitive to chemo than most kids with Down syndrome – so in this case Peter, yes! IT IS ALL ABOUT YOU! Praying for wisdom of all caring for Peter – that together we can find the right treatment plan for him, so Peter can continue to run forward in life with a smile on his face and arms spread wide to keep filling this world with hugs.

 

We love you Peter!!

xoxoxo

catherine

peter bear is in the house!

Peter Bear came home! 

Getting dressed up to come home….so happy to be out of hospital-wear…..

Very excited to have him home, but as usual nothing is quite simple! Peter’s counts actually  dropped from yesterday to today – which was disappointing. However, per John the oncologist said there were “other factors” which supported the decision to discharge him. Peter came home with his port still accessed – so not sure if that was intentional or oversight. I have lots of questions, and Peter’s oncologist is going to be calling us to discuss next steps. At this point Peter is just happy to be home, and is playing in the back yard with G and the boys. He is so happy to be outside!

As if to keep things more interesting – John got a call from the Health Dpt today. Turns out Peter’s blood cultured an obscure bacterial strain of influenza. He had to answer a bunch of questions about our family, and they may be calling us back with instructions (as needed). They seemed most concerned about G. The antibiotics Peter was on should cover all of this – so he is not longer contagious…..or so we are told!

This mama bear is WORN OUT!! My head is pounding and I wish I could just snuggle on my kids on a couch in front of a good movie….but it is finals week. Maybe this weekend!! If something big comes up in the oncology call we are waiting for I will update – otherwise more to come tomorrow.

Thank you again for your support, thoughts and prayers. We feel so blessed and thankful to have Peter home. I pray that he recovers safely and we can keep him home!

xoxoxo

catherine

my sunday…..by peter bear

I woke up early today – wow I feel so much better!! I woke up with the sunrise and I could see the beautiful purple mountains from my room. What should I do? I woke up Papa and told him it was time to play. We had a lot of fun together but I wasn’t too hungry for breakfast. Then my nurse came to see me – she said I was doing so much better…..everyone seems so happy!

She came back a bit later with my doctor to talk about when I might go home – oh I hoped it was today! Papa talked to them about questions my Mama had, including how to change my chemo treatments so I don’t feel quite so bad and have to come back to the hospital so often. My doctor agreed so there were more smiles.

The Mama came…..I know Papa told her she might get a nap in with me – so I decided to make her play really hard with me! No more Mr. Snuggle Bear – I am Mr. On The Go Bear!! We skyped with my Granny and Grandaddy in Peru and I showed them how much better I was feeling today. They were very happy too! Then my dream came true – I got to go on a wagon ride.

I don’t know why, but my Mama has a lousy sense of direction – I was so happy to be in the wagon and I pointed the way to go home…..but she keep taking me in circles.

finally a wagon ride…..but it went it circles!

When I tried jumping out of my bed lots of times, she let me go on a walk…..free at last! I took my pole and drove it right towards to door I had been trying to show her. No matter how much I tried to out run her and push her away, she keep turning my pole, so now I was going in circles!

making a run for the exit

One last try …..I jumped in the car and aimed for the exit door – dragging my pole along behind. Ouch it pulled on me a bit …..but it was going to be worth it. But, I think there is something wrong with my car (other than pink is just not my color) – it too went in circles no matter how hard I turned the steering wheel.

driving my car…

All this trying to get home really wore me out! I went back to 4306 Pediatric Unit, and ate a big dinner with my Mama – pasta alfredo, hot dog, vanilla ice cream and some milk. My tummy was so full! So I let my Mama rock me and well…..ahhhh……I started to feel so sleepy and started dreaming of going home soon. The doctor said maybe tomorrow – I sure hope so!

Thank you for all your prayers for me! They make me smile and I wish I could hug you all!!

Lots of bear hugs,

Mr. Peter Bear

peter bear update…morning 5/20/12

It was a chilly day yesterday and I spent the morning at Tommy’s track meet. Just to add some humor to the stress, let’s just say that track would not be Tommy’s forte but he had fun! Fast mind, slow legs in this case. The gun went off for the 50m dash – Tommy takes off in a not-so-much-blaze-of-glory – about 20 meters into it he comes to a stop to see how far back the other runners were….a perplexed look on his face as he spots no one behind him…..then he realized the rest of the runner were on the 40m line. So off he went running with a smile on his face. The meet ended when the cold rain finally brought some lightening with it. So we loaded up in the car and went down to switch places with John at the hospital.

View of the mountains from Peter’s hospital room.

I spent the day and most of the evening with Peter. It was wonderful! He had to go back on oxygen to keep his saturation rates up – it didn’t bother him and helped his breathing slow down a bit. His blood counts were still lousy which was disappointing and he didn’t want to eat. However, his mood was much improved and lots of smiles! He even scooted over in his bed and patted the spot next to him, asking me to join him…..I am so happy to be out of time out! He was a total snuggle bug and we watched way too much Clifford and Dora! By evening he was even happier – and even ate half a plate of pasta alfredo and started drinking milk. I know he is not yet back to normal when he is happy to sit or lay in bed, instead of trying to make a run for it. He did however throw his arms up in the air to do some dancing with Dora. Too cute!! What Peter doesn’t know is that the little trampoline we got online months ago through a rewards program finally arrived…..so when he gets home he can practice his jumping so he can keep up with Dora and Boots!

Peter dancing to Dora

I thought I might have got the better end of the deal since I was going to get my own bed for a night – but it isn’t so comfortable when I have to share it with Alexandra, Gretchen and Tommy! Is there a size bigger than a king? This morning Alexandra and I went to Mass  – we went to a different church because honestly I think I would have burst out into tears if anyone asked me where Peter was……I do however feel so incredibly grateful that John got Peter straight to the ER at the first sign of issues. I strongly believe that had he not done that, we would have ended right back where we were in November on a ventilator and praying for a miracle. John is still with Peter, waiting for the doctor to come in. I gave him my questions as I see this continuing to repeat itself every time Peter is on full chemo dosage and getting the infusion – his little body just can’t handle it – he needs some help in my opinion. More to come on that.

Peter playing on the iPad.

So this morning Peter is in great spirits! John said he has insisted on hugging everyone that comes into the room. We have held off on visitors because Peter’s immune system was not functioning – but there is plenty of hospital staff. So heart warming to know Peter is back to his purpose of sharing love and joy! If only we all could live life with such a gratitude for those around us. I am not feeling quite so grateful right now as I try to get the other 5 to do something useful around the house and all they seem to do is fall all over each other and accomplish nothing. UGH!

Peter’s labs have drastically improved from yesterday with a lot of counts easily doubling – YAY!!!! His ANC is up to 500 which is a material jump. Not where we want it to be but a very significant positive trend. I have not yet heard back on the bacteria – but hoping it was just a contaminant in the blood sample. Peter’s oncology nurse was in and hopeful that Peter can come home very soon, but was going to come back in with the oncologist to make the assessment on progress. Overall everyone is very happy with how he is doing. He is off the oxygen right now to make sure he can keep his saturation rates on his own during the day. Eating hasn’t kicked in completely yet – but will keep working on the drinking and eating. His digestive system has kicked back in – so things are working again. Alleluia!!

Off to get some stuff done with the kids and push Jack along to finish his school project due tomorrow. Alexandra and Michael have finals this week. I can’t believe end of school year is here! So looking forward to slower, longer, warmer days and lots of dinners on the back porch or by the pool!

Thank you a million times over for all your support, thoughts and prayers.

xoxoxo

catherine

peter is in the hospital …..5/18 update

What a roller coaster 24 hours! This time yesterday I was on a plane home from Minnesota via Denver. I texted John when I landed in Denver and then again when I was disappointed I would have to pay to go stand by on an earlier flight. He told me everyone was happy I was coming home and he would stay up for me. All was well. Finally at 10pm we started to board – I texted John again – and he replied with a “Text me when you land”. I thought nothing of it. When I landed in Colorado Springs, John texted me that he was at the ER with Peter. I was crushed! I was so looking forward to being home and enjoying time with the kids – and all the fears that come with Peter getting sick flooded back. He said Peter was running 103 temp and struggling to breathe. It felt like a deja vu. I raced over to the ER to be with them.

Did I ever mention that Peter puts me in time out after a trip? He doesn’t understand why I am gone – so for about the first day that I am home he totally rejects me. Consumed already by guilt of being a traveling working mom – he unknowingly drives a stake into my heart. This time was no different. All I wanted to do was scoop him up in my arms and he looked at me, said NO, put his hand out as if to push me, and then turned his back. This adjustment period is so hard every time I am on a trip – but this time was a million times harder.

The doctor was in and out as were nurses. So thankful that nurses we know and trust were on duty in peds and came down to assist with Peter. His temp high, breathing very labored and fast – I could see him retracting pretty hard when he breathed. His heart was racing so fast I could see the rapid pulse popping out of his neck. It honestly was like reliving last November just waiting for the ventilator. Peter was getting more and more agitated as they tried repeatedly to access his port without success. Finally he started to get sleepy – and this was when I was able to climb onto the bed with him and he fell asleep on me. What a gift!

He was finally moved up to Peds unit and a little after 2am, I headed home as we needed to make sure kids got to school. So with little sleep on my side, everyone got dropped off safely and on time, before I headed back into the hospital. Peter slept in for a long time – but his breathing was still labored, heart rate high, and very warm. John and I were able to spend sometime together until Peter surfaced. He attempted to put me back in time out but I told him I was laying next to him one way or another – I climbed back into his bed and in seconds he was snuggled up…..maybe not where he needed to be, but definitely where I needed him to be! We spent the rest of the day like watching cartoons – eventually falling asleep together and I was able to get a light nap while I listened to his improved breathing and felt his warm breath……never really take breathing for granted any more!

His oncologist came in today and Peter’s morning labs were worse than the night before. He was dehydrated so that impacted the counts – and once the IV plumped him back up over night – the labs this morning were more accurate. His ANC that we strive to keep between 1500 and 1800 was under a hundred. All his counts are lower than last week but he has barely any white blood cells. Nothing was cultured yet so we really think this is all as a result of the tough chemo he had over the last week that wiped him out hard. Given how low he has gone the expectation is that he will be admitted until at least middle of next week until his counts reach a safer level again.

This afternoon a doctor came in to evaluate the situation with Peter’s port as there was the likelihood he was going to require surgery to have it replaced. She determined that it felt positioned properly and was a little more forceful in her flush/pull of saline until she got some blood. They decided it was safe to put a thinner in – so we are hoping that will clear what we assume is a clot – and his port will be back to normal functioning – per John’s evening update they moved the IV to the port and so far so good.

I left late afternoon to come spend the evening with the kids and get everyone where they need to be in the morning – including cheering Tommy on at his very first track meet! At that time Peter’s breathing was normal, his heart rate much improved, his temperature down but best of all – he gave me big hugs and tried signing “I love you”. Hugs from Peter are like my IV in life – I am so dehydrated without them!

Peter continues to be lethargic and not his normal happy self, but we pray he continues down the road to full recover. Unless things change materially during the night, I am going to wrap up today with a THANK YOU for all your thoughts, prayers and words of encouragement – John loves having me read them to him and we both tear up and smile!

xoxo
catherine

ps. I haven’t had the time (my most used excuse!) to get all the features of this blog going….so the Facebook link hasn’t worked. During times Peter is in the hospital I will do snippet updates on FB so if you want to catch those you can find me as “Catherine Joanna Krause”. We are still keeping the CarePages going – and for the most part will match the updates we have on this blog for Peter less pics because I got tired of fighting the CP to get pictures uploaded.

the perfect mom – i saw her!

Many years ago I read one of my favorite books – The Perfect World Inside My Minivan, by Marybeth Hicks. It is a compilation of her articles. With her I laughed, I cried, and I laughed again – I no longer felt quite as alone in the world of motherly self-doubt and distorted image of other’s perfection. I remember sitting in my bed laughing, crying and choking as I read to John her chapter titled “Imagining Life as the Worlds Best Mom” – as Marybeth shares her experience “…crept slowly towards her back bumper…..I was (sort of) in the presence of greatness. Its red letters were outlined in gold: ‘World’s Best Mom’. There she was. I couldn’t believe it. The world’s best mom was driving the van right in front of me. She had just dropped her children at school, and now she must be headed home for a day of world-class motherhood.”  She goes on to speculate about the world’s best mom – orderly home, laundry caught up, heart warming errands, organized and productive days.

Well, then it happened to me. It was an early morning football game for Jack. Everyone else warmly tucked in bed, we headed out into the chilly spring morning and headed down to the park. I wasn’t even in the minivan! At first we talked and laughed, and then got lost in thought – mine went something like “can’t believe I have to go on a business trip on a Sunday….ugh…..better get everything done today….yep – all today….seriously – another trip! focus Catherine!! don’t forget anything before you can put it in your phone….menu, grocery shopping, cleaning, laundry – lots of laundry, present for party, party invitations…..seriously – a trip on a Sunday! ….FOCUS…..when should we go to church? FOCUS! …..menu, grocery, shopping, cleaning, laundry, school folders, laundry again, packing, e-mails, shucks! forgot about the newsletter to write – ugh! ….” and then I did see her! She was there in front of me in a minivan! Just like I had read she would be. Her hair was perfectly cut, colored and styled. Her smile big and her face glowed. She turned up the music a little as she broke out in dance and song – inviting the kids in the car to join. Their heads bopped and she smiled big. There she was – the perfect mom! – beautiful, smiling and having fun on this chilly early Saturday morning. WOW! And I bet her van was perfectly orderly and clean too! I looked over at Jack as he stared out the window lost in thought. Should I apologize for not being her? Should I suggest he jump out of the car and run to her van while the light was still red? Oh goodness! I bet her son is on Jack’s team – and probably a star quarterback and she has the perfect home-made snacks to share. There she was – shining, glowing, smiling – the perfect mom so close and I did not know what to do!

I tailed her to the park……by default, and not intention! Yes her son was on the team. Having not left the house in time to get my morning addiction of Starbucks – I dropped Jack off for warm up and nipped over. This of all mornings I was going to need my liquid gold to keep me going for the next couple of hours. I parked around the corner from Starbucks and jumped out of the car. As I scurried I saw her park across the road. Seriously??!! Do you have to stalk me with your perfection? Two girls with her, she held their hands as they laughed and ran across the road. When was the last time I did that? Hmmm…..back in “Never”? I think I’m usually counting them all before we cross, screaming RUUUUUUUN!!!! as we race across, and then counting them again to make sure no kid was left behind.

Scurrying some more I made it into Starbucks before her. She stood behind me in line as she would kneel down to whisper to the girls gently and kindly eye-to-eye……I do that sometimes! Yep – sometimes….mental note – do it more often! The girls debated what they wanted and turned to her for direction. Then I heard her sweetly say “Oh, I don’t know”. What??!! You don’t know?? You are the perfect mom – you know it all! Then that chattering started as they went back and forth trying to decide what they could or could not have. This mom of little patience and fast decision making was a tad less than impressed. Surely I was just being snarky! I grabbed my drink and hustled to my car. Raced back to the park and paced the field – freezing cold – watching Jack warm up, run around, be goofy and tackle the coach to the ground way too many times.

There she was – sitting on the sidelines in her cute outfit (ugh – if only I could carry that off!), with the girls in matching cute outfits, and all snuggled up in some great looking blankets sipping their drinks and giggling as they watched the boys. I continued to pace in my old jeans, not warm enough sweatshirt and hair in a messy pony tail. She looked over and smiled at me. Me? I looked over my shoulder – maybe a friend? Oh my goodness! The almost perfect mom was smiling at me! After pacing the field a few more times we finally made contact. A hello, how are you, geez it is chilly followed by which is your son. We compared notes and smiled – it felt like we were sizing each other up – sizing each other up? No way! We moms don’t do that right??!!

Lets face it – we were – it happens. We chatted some more and compared those statically significant get-to-know-you’s …..where do you live, how many kids, what school, what do you do? She was nice. Very pleasant. I could cut her some slack for not being decisive in the Starbucks line since after all she was behind me. Then she said it ….the words I don’t ever expect from the perfect mom…..”Wow! You are amazing!” followed by “I don’t know how you do it all plus have six kids and work full time – you are amazing!”. Huh??!! say that again! Then she adds on “I have half the kids and don’t work and I can’t keep up – you really are amazing!”. The almost perfect mom thought I was amazing!

So after the game Jack and I loaded back up in our little cold car. We smiled and laughed and re-played the best plays of the game. I may not have the perfect hair, big smile, or cleanest van in town – but – I have six wonderful kids who love me and that makes me the most blessed mom! On Mother’s Day Jack lovingly said “I think you are the best mom in the world! You are the best mom ever!! As a matter of fact I think you are right up there with [the virgin] Mary as most amazing mom ever ever ever!” ……to which I responded “Oh buddy, that is so sweet – I can only try to be a bit as wonderful as Our Mother”. Michael chimes in with “Well, how hard could it be to raise the perfect son who could do no wrong? I mean – HE WAS JESUS – so I think your job is at least ten times harder….should be six but Jack counts as more!”.

Now when I am out in the car with the kids I do still stare into the distance making my mental to-do lists before I forget….but then I catch myself grateful for the blessed moment with my kids in the car….and sometimes I just turn up the music and with my awkward smile, straggly mom pony-tail and messy car, I break out into song and get the kids dance with me. Who knows what the car behind me is thinking….

Here is to every perfectly imperfect and blessed mom – know that to someone else you are amazing!

catherine …..xoxoxo

a new birth

Mother’s Day 2012 and I sit at my computer – kids up and down the stairs to my little basement office – another hug, another kiss, another “can I have…”, and another “I need…”. The chaos of another Sunday night as we prepare six busy kids for the week ahead and I will be boarding a plane again! Throw on Mother’s Day and it seems like a crazy night to take on another project. But here I am, typing a few words and dreaming of many more to come. Just five short years ago I did not know what a blog was! Then my life changed – seven short days after I birthed Peter the words no mother wants to hear – “he took a turn for the worse, and we don’t know if he will make it through the day”. That night blogging started – Peter was in the careful care of the staff at The Children’s Hospital in Denver when I was encouraged to start a “CarePage” as a way to keep family and friends updated on Peter’s progress. What started as updates rapidly became personal therapy – a few minutes a day to assess what was happening, re-set my thoughts and feelings, and focus on the next step to take. Over the years the CarePage evolved into family updates, and ebbed and flowed with frequency. I played with other tools (yes – loved my “webme” until Apple took it away! I still love you Apple!!), and today I start afresh! Hello world!

Why do this now? I love to write! I may not be eloquent, or grammatically correct, and at times probably a bit boring – but it has become my sharing, my healing, my memory keeping…..the minutes I take to write are like emotional cleansing. Recently someone told me to not fall victim to chaos but to navigate it with focus on what really matters. Wow! Really?! For so many years I’ve complained of not enough time to do what matters, what I enjoy, what is good for the family. The word “navigate” spoke to me – I can’t control so much around me – but I can navigate it with my compass to what matters. And this matters! If nothing else, one day my children will have my memories when they may have slipped from my mind.

My Mother’s Day wish? ….to spend time as a family coming up with our “purpose statement”. No longer do I want to fly-by-the-seat-of-our-pants! No longer do I want to be re-active, but rather purposeful – navigating our lives with our own northern star. Why you ask?….because as Alexandra said best – “we are Krause bears!”. We lounged around my favorite room – our family room with scattered toys, warm fireplace, and barn wood on the walls – the little extension to our house that makes me feel like I have run away to our cabin in the woods. It started off with my sharing a quote recently that spoke to me – “the greatest danger is letting the urgent things crowd out the important” (Charles E Hummel). I can’t stop the urgent, but I can navigate the urgent, with the important as my guiding star. We talked about what is important to us, when we are our best and when we are our worse. We talked about what we wish we could do more of and what we could do better. We talked about home environment, principals, and purposes. We talked about what makes us unique as a family and as individuals – and what we each hope for in life for each other and ourselves. We shared stories, thoughts, tears and of course laughter. The common theme coming from my little bear cubs was compassion, love and respect. What they want is more time to celebrate, to have fun, to enjoy each other…..to create memories and traditions together!

What is our purpose statement after all that? It is still in progress!

This creative outlet all began with a baby bear…my Baby Bear – now grown into a 5 year old Peter Bear! So while I hope to share so much more, maybe bring over the past as I record our future, share our reflections, laugh some and share some more – I am wrapping this entry up with a Peter update. He turned 5 this last week – and was preceded by a week of extreme emotions for me. Rationally I knew it was a time to celebrate, but emotionally it was a week of letting the cracks appear and be healed. Birth, NICU, flight for life, more NICU, kidney failure, liver failure, oxygen tubes, feeding tubes, pumps, monitors, nurses, therapists, pulmonary hypertension, cardiologists, open heart surgery, hearing loss, poor vision – that covers Peter’s first 7 weeks. More oxygen tubes, feeding tubes, monitors, pumps, nurses, therapists, doctors, appointments, charts, tracking, worry, fear, love….smiles, rolling over, learning to sit starting to crawl – that gets us to a year. More tubes, more specialists, more charting, and throw in some aspirating..more smiles, more milestones, first laughter, and first plane trip to Peru – that covers Peter’s second year. Less tubes, less oxygen, more movement, more milestones, more laughter, more fun and finally walking – that covers Peter’s third year. Pre-school, pain, discomfort, leukemia, chemotherapy, more drugs, less hair, grumpy pills and saving pills, more doctors, more nurses, more scares in the hospital, more transfusions, more doctor visits, more loving, more tears – Peter’s fourth year. Less cancer, less oxygen, more good days, less chemo, more hair and pre-school again….then a very scary hospital stay – 9 weeks and another “he took a turn for the worse, and we aren’t sure he is going to make it” – followed by miracles, healing, more laughter, three pairs of glasses, pre-school again and lots and lots and lots of love – Peter’s 5th year!

So how did we celebrate? Quietly – no performing, just embracing. Peter had chemo that day, he stayed home from school and then played outside. He had his favorite pasta with home-made alfredo for dinner. A birthday cake, a Mr. Potato Head, a whistle and some fun fridge magnets……none of which replaced what he really wanted – time, love, laughter, fun and playing. Then we went to the hospital again – this time for a visit. We took a cake that simply said “Thank you!” and visited the PICU. It was hard to see Peter’s room again – but I am so thankful it was empty – no one having to go through what he did for so long. And as we handed them the cake we said there was no where we would rather be than with them, because they are the ones that gave us another birthday with Peter.

Happy Mother’s Day!

catherine….xoxoxo