A Hell-uv-a Week!

The family got home late Monday, which was celebrated by all! Lots of hugs and kisses and extra hugs and kisses between G and Peter. The family was back together! With the help of my friend Barb – we set up a family wall going up the stairs as a “welcome home” surprise. Everyone loved it! By that night things were so back to normal – more arguing about who got to use the iPad vs. my iPhone. Peter got spoiled having both to himself while they family was gone! All in all though, everyone was happy to be back together.

The Krause Bears Family Wall

What is that saying?! The family that stays together pukes together??!! It started with G on Tuesday. We braced ourselves but hoped it was just something she ate. Wednesday Peter had labs. His ANC was 1500. Almost too good to be true – my usual “he must be getting sick” thought jumped in – but either way we were happy it was an indicator that his system had jump started finally. We sat down for dinner and he did a near perfect sign of the cross. I complimented him on it as he was snuggled up close to me – he turned, smiled, said “yeah” and got sick all over me. John was the next to fall, followed by Tommy, then Jack. All bounced back pretty well but poor Peter. Hoping some of us had been spared! Peter was still in bad shape yesterday, so went to the clinic for IV. His ANC had dropped to 1000 but still holding strong. He was so cranky! This morning Alexandra fell and Michael has been threatening to all day. Do you know what it feels like to be the last one standing? It is like playing Survivor but ultimately knowing no one gets off the island of the tummy bug. Oh but I am praying I get spared!

G still is not quite back to normal, but today perked up and is back to her normal energy level and desire to play outside. Peter had a spurt of encouraging enthusiasm when I got back from grocery shopping – followed by a steady decline until he was sick again. He is back to yucky diapers and some dry heaving. We are supposed to try and get as much fluid as we can in him – which is not easy as he wants nothing. Unless miraculously better by the morning – he will be admitted so that he can get hooked up to IV and kept hydrated to avoid any other illness. Sigh …..we really are on the frequent flyer program to the Peds floor!

So between tummy bugs, work madness, and overall home chaos – it really has been a helluva week! Praying this passes soon!! Will try to get a quick update out tomorrow night.

And I take the opportunity to let everyone know that it is that time of year again – the Colorado Springs Down Syndrome Buddy Walk!! I am so excited that based on a proposal I sent in months ago, UnitedHealth is a sponsor of the event and joining us to form a walking team and fundraise for CSDSA. This is our only fundraiser for the year and critical to continue to offer so many vital programs for individuals with Down syndrome and their families in Southern Colorado. We invite you to consider joining our team as a walker, or joining us as a virtual walker through a donation. Every dollar is much appreciated and goes to wonderful use by this all volunteer non-profit I have had the pleasure to work with for 4 years.

To join our team or donate to our team – please visit the following link:

Team Peter Bear

God bless!



Peter Bear Update – July 21st, 2012

What a week we’ve had! Peter has enjoyed lots of time outside, evening walks, pool time (after he was de-accessed) and late night movies. To look at him you’d say he is doing great – good color, energy, smiling, and his speech is taking off. It is amazing what he says when there is no one else doing the talking…..it gives me hope! Peter has had his naughty times and his funny times – I came downstairs to get his shoes and when I went back upstairs he was no longer in my room. I could hear music playing from Alexandra’s room – and low and behold little dude is standing in her room, my mascara in his hand, singing away to the song on the radio as he rocked back and forth, using the mascara as a microphone. I so wish I had my camera to capture that moment of just pure play and joy!

Peter with Alec who helped care for him this week while I was at work…..Peter’s new best buddy who taught him how to dunk the basketball!

Peter did have labs this week and they were disappointing. We want his ANC to be 1500 and he went from 100 to 380 in 10 days. It normally doesn’t take him this long to recover – so of course I am on a roller coaster of emotions right now. I am working on remaining optimistic that this is just a slow recovery given how much his little body has gone through….but I do have times were I see him look and smile at me, and I fear losing those moments. We are going back in Wednesday for more labs. The hope is that he has improved and possibly even ready to start chemo on reduced dosage. However, if his ANC is not better or has worsened, then we will most likely need to do a bone marrow to determine if he has relapsed. My stomach tightens just thinking about it.

The first couple of days that the family was gone, I felt so disoriented. I missed them and was toying with sadness over many things. Then Peter and I found our rhythm! We have had just so much fun this week. Even though we haven’t ventured far because of his fragility – we have just enjoyed so much time together. Even though it isn’t always easy – and his sleeping has been erratic at best – I am going to cherish these 10 days of undivided Peter time for ever! And despite the stress of work and Peter’s health – I can’t help but smile big every time Peter says “Mama, come on…..let’s go!”

Keeping this short as getting Clifford (yes, the big red dog on DVD) to ‘babysit’ Peter for 10 minutes is a luxury – usually only get about 3 minutes before he realizes I snuck away to do something.


Worry-Mommy Update

Thank you to all for your words – words of comfort, words of friendship, words of wisdom, and words of advice. I appreciate them all. This will be a short update as I feel compelled to answer but at the same time, work calls tomorrow, and I stayed up later than planned building lego towers with Peter. Amazing how some one-on-one time with out distractions can remind you just how in love you are with someone!

…and when I could stretch no more, I knocked it down and started again….

My worry, as does that of many of the moms who reached out to me, comes from a place of caring – a fine line separates them! Because we care, we worry we are not doing enough. Six years ago someone told me I was a bad mother for working. Not a day goes by that I don’t think of those words and they haunt me. I know some of you have talked me through this too many times – but the hurt is still there. So when I love my family with the intensity that I do, and I worry that I am not giving them enough of me, words such as those sting extra hard. At the end of the day I am like everyone else – I want to reach the end of my life and feel like I was a good person who did the right things. What is a good person? Easier said than truly defined as that is where I often hiccup myself. I trust that God will fill me with the grace that I need if I open myself up to him and as he has during many of the difficult parts of our journey with Peter, but I struggle with the no worrying. Worry comes from caring, and caring is what I am called to do. I am thankful every time Peter pulls through a health crisis, but yes, I worry every time he gets sick again. We have spent months in the hospital since he was born – it is the caring and the worry that motivate me into advocating and celebrating. Today I worry about things never imagined, and yesterdays I worried about things that are nothing to me today. I hope to continue to grow, learn, and be more purposeful in every way.
In the event it has not been clear since I started blogging –  I love my son beyond belief!!  I love him with an intensity I did not know possible. I love all my children, but Peter is there is a difference – a vulnerability and openness that the world can’t rob him of as he grows, but which also makes him an easy target. Browsing the internet alone shares disturbing images of disrespect towards individuals with Down syndrome in the name of humor. So yes, I know my son is disabled and looks different, and that alone brings attention to him. I also know that for every person who judges negatively there are others who embrace him with a smile. I am not embarrassed by Peter, nor do I try to hide and pretend he is not disabled. I am proud of Peter and wish everyone was as blessed as I feel with him in my life.  I would have talked to the girl had the time presented itself – I was looking for the right words. Peter had different plans and for anyone with a “runner” in the family, you know when he says he is leaving you catch up or you find him in the road. Which Peter has already done this week! He said he wanted a walk, I said I needed to go potty first, a few minutes later he had already disabled the 3 locks on the back door and had made it to the street behind us. So when Peter says we are done, I follow!
I have talked to many kids in the right setting about Peter, answered questions about his eyes, his floppy ear, why he walks funny, and so on. I have had to explain why he doesn’t learn as fast when kids playing with him get frustrated. I actually prefer to be asked than to be avoided. I have presented on Down syndrome and people first language at two of my kids’ schools. I have answered questions from adults and grinned through some hurtful comments to find a learning opportunity. Comments like “I guess you were too old to have kids and got stuck with a retard”. Yes, they happen. And yes, I have done my best to educate – even when the conversation starts from a place of judgement. This time, time did not allow for that. And I hope if nothing else she knows that in a parents’ eyes their children are beautiful and will remember that at a meaningful time for her.
There was concern I had judged the girl. I’d like to apologize because at some level I did. For the record though, I don’t believe any pretty girl is a Queen Bee – I like to think I have two beautiful girls and know many others that are gorgeous inside and out who aren’t Queen Bees or wanna-be’s. I don’t know this girl but I have been around girls long enough to discern some behaviors, tones and attitudes – and have comforted my beautiful daughter from words of judgement and not curiosity.  I believe our children can learn, but adults have the responsibility to model the right behavior. And this is a do as I say, and not as I do moment! When my daughter exclaims that speeding is a rush, or my son yells out from the back of the car “HELLO! GREEN MEANS GO!!” I know I have some work to do on the behavior I model. We all do! None of us are perfect.
Off to give Peter another breathing treatment and hope for some sleep tonight – he gave me one good night of solid sleep and has since been up every night uncomfortable. I think he rolls over onto his accessed port and it pokes him. He is naturally a tummy sleeper with the rear up in the air – so trying to get him to sleep on his side is not easy!
Good night friends!

Confessions of a Worry-Mom

I left McDonald’s, I got in the car, and I cried…..

The emotions have been mounting. For so many months they are there ….right on the edge….poke their head out and just as fast hide again because it never feels like there is enough time or energy or strength to deal with them all coming out.

A week ago Peter was in the hospital, again. The times are a mixed blessing of being forced to slow down and just be with Peter, and a stark reminder that he is fragile – very fragile. Sometimes when he sleeps I just stare at him. I am thankful for each breath he takes. I think of what we need to do. I think of what we haven’t done. I think of what I wish we could do. Then I stare at Peter again and I am just thankful.

John and the kids left for Montana. Peter and I are at home. I worry about Peter getting sick. I check his breathing in the middle of the night. I worry when he goes for long stretches of not wanting to eat. I worry about G forgetting who I am in the days they are gone. I worry about their safety on the road. I worry about Tommy and Jack and Michael and Alexandra. I worry about John. Yes – I worry! And through it all I often worry that I am just not doing enough – or at least enough of the right thing – and I feel alone. I have heard it before – give it up and trust – I can’t fully and fairly and unemotionally answer that today.

Last week a FB friend posted that her 7yo daughter tested as a 2yo in certain areas. She declared that she felt like she had let her daughter down. My instinct was to write words of comfort – but I stopped myself. At some level it felt hollow – a “do as I say, and not as I do” moment. I worry about letting down all my kids every day! Who am I to deny her those feelings when I feel them every day?  I wish I could take them away. I know at many levels I am not alone. We are not alone. When Alexandra was a baby I muttered something like “I can’t wait until she is a little older and I don’t worry as much”. My mother chuckled one of those full of wisdom chuckles. Simply told me the worrying never goes away – even when your child has left home you will worry. It is what mothers do.

With Peter I worry extra. I worry about what I should teach him. I worry about what he will be able to learn. I worry about his health – a lot. I worry about his future. Sometimes he stands a certain way, says a certain word, or makes a certain movement and I get a glimpse of what he may be one day – and I worry I am not doing enough by any stretch of the imagination to allow him to make his dreams come true. But through all the worry I see Peter as this gorgeous little boy who knows just when to give me a hug.

Inclusion:  the act of including or the state of being included. For parents of children with special needs inclusion is a big word filled with many rules and guidelines. It tells us that by law our children should receive the least restrictive education. Our children can be included. Today was a lesson for me on inclusion – a tough lesson. All the rules and guidelines and laws in the world will not teach including. There is inclusion, and there is including.

Many years ago children like Peter were locked away and forgotten. In parts of our world they still are, sadly. Here, today, children like Peter come home, are loved, are educated, have opportunities. They have “inclusion”. I see Peter through my eyes and I hear about Peter through the words of those close to him who care for him – family, friends, nurses, doctors, therapists, co-workers. I feel like Peter is included. I had a false sense of security that others see Peter as I do.

Peter is on a diet again. I can’t think of the last time I have gone to McDonalds but for a late night chocolate chip cookie run. I decided to give it a try today – maybe fries, chicken nuggets and milkshake would get some calories into Peter and fuel his eating. As I walked into the play area with Peter I saw other parents stare. I smiled. No smiles back. Some were chatting as they walked around tracking their kids. I walked around. No words. No smiles. A few glances but mostly the avoid-eye-contact movement. No success with the eating but Peter bravely took off into the play structure. Not always graceful but I was proud of him for going in and out and exploring – way to go Peter!

Then came the Queen Bee – you know who I am talking about. The young pretty girl who will not grow up to be a wanna-be. She spoke to me a couple of times with words of wisdom about the play set and kids. Then the words “Peter looks…hmmm….funny”. The awkward moment of finding a word other than “weird”. “Really?” I said, “I think he is very handsome! He does have that bruise on the side of his nose – but I still think he is very good looking!” Peter looked at me and I saw this short, stocky, awkward kid with one eye that likes to roll towards his nose and a floppy ear smile up at me. She gave me that look that said ‘You are an adult and I have to tell you!’, then she said “He looks funny, there is something wrong with him and his eyes”. Sigh. As I was mustering some words of wisdom, Peter looked at me again and said “Done!” and started to walk out.

We left McDonalds, we got in the car, I cried…….for just a few seconds, but it hurt!

Inclusion – an act or a state? I would argue today that an act or a state is not complete with out the true intent. I don’t fault the girl for noticing that Peter is different. I don’t blame the parents for being uncomfortable – I am sure before Peter I was one of them, uncertain on what to say or do for fear of being offensive. But now I see it through the eyes of Peter’s mom. I don’t know what he thinks when he waves at people and gets ignored, I don’t know how he feels when he tries to include a child in a game and they say NO and push him away. I don’t know. But I know how I feel, and it hurts.

I am used to seeing Peter surrounded by those who know him at some level and who care for him. Inclusion starts at home. Peter is surrounded by parents, siblings, family and friends who include him. Today I saw Peter through the eyes of children – like those in his class this Fall – who may avoid him. Through the eyes of parents – like those of his future classmates – who rather not make eye contact. All my worries from the years before the cancer are back. Will he make friends? Will he get invited to birthday parties? Will he have sleep overs with a best friends? Will he be included as much as he tries to embrace those around him?

Inclusion started at home when families embraced their children with special needs and brought them home. Inclusion spread when families advocated for their children and law makers created rules. Inclusion grew as teachers learned what it means to teach children with different abilities. Today I learned that to truly include someone – that act of including – is as much action as it is attitude. We’ve come along way from buses with seating areas based on color. Many get on buses today and don’t think about the color of those around them. I pray that in my lifetime we go from the action of inclusion to the attitude of inclusion.

So what was next? I drove around feeling very lonely and not sure of who to call as I just needed a shoulder to lean on. Everyone has issues and it felt a bit like a pity party. Instead I took Peter to get a much needed haircut and then to the park he has been pointing at during our evening walks. Yes, he is awkward, looks different, somewhat uncoordinated but his a killer smile and great hugs. As he “ran” towards the play area there was a family sitting there. They smiled. And when Peter stopped long enough to look over his shoulder to say “Mama, come on!” they smiled even bigger.

Yes Peter, as long as you invite me to come along, I will! Thank you for holding my hand when I need guidance, giving me a hug when I feel lonely, including me in your adventures!

Mama says I look like TinTin now…..I’m just happy the iPad didn’t go to Montana!



Peter Bear night time escape!

John spent the night with Peter, and we were both disappointed with the lab results this morning. Peter has very little left in terms of white blood cells, meaning his ANC that we hope to keep around 1500 is under a hundred. His platelets dropped. It was just a drop in everything kind of result. However, his doctor remains optimistic that this is the dip before the rise and Peter’s great mood and energy level are good indicators of what is to come.

Peter enjoyed physical and occupational therapy at the hospital but was wiped out from them. His saturations dropped and he was exhausted. He slept well but required an oxygen boost. Clifford was given a break today and replaced by watching Dora become a princess many times over. Peter enjoyed a few moments of having sole possession of the iPad and working on his therapy apps. He is getting better and better. As a matter of fact I don’t know what finger strokes he does but he gets my iPad to do things I have never been able to recreate. Not that I try often – the grubby finger prints are a good indicator of who uses it the most!

The exciting news came late afternoon – Peter was being allowed to come home! I honestly take it as a compliment that John and I are trusted to administer this care at home as I know that not everyone would be ready to go home given the fragility and care needed. We already have oxygen at home, and the nebulizer and IV pump were dropped off. A nurse is coming to get us set up on the IV drugs but we are missing the nebulizer drugs – AHHH – so the hospital is hunting those down. Peter has to go back in on Thursday to have his port de-accessed/re-accessed and at this point will need IV’s at home through Wednesday of next week.

Waiting for discharge orders and outta here!

Peter was so excited to come home! He smiled the whole way in the car and was thrilled as Tommy and Gretchen ran out to meet him in the driveway. Tommy’s excitement level was a few pitches too high. Soon Jack remember the only good part of Peter being in the hospital is not having to pick up the books that fly off the shelf. Peter and G played hide and seek looking for Tommy. Michael welcomed Peter and quietly retreated to his room to read as I am sure he thrilled to be off babysitting duty for a bit. He has done a great job keeping up with them – going so far as to lay on the ground and color Barbie with G late into the night. He will shoot me for sharing that! Alexandra is babysitting and will be shocked to come home and find Peter – it was so unexpected – it will give her so much relief as she shares how anxious she feels when we are not all together.

As in a household this size, it is easy to get back into routines and everything the comes with it. John is driving G and Peter around so they will fall asleep as I type this update. Jack is striving to reach Michael levels of helper which is just wonderful! Tommy is in bed “thinking” about what it means to hit someone on the head. G had her “think about it” moment as she kept tearing the iPad away from Peter. Tears. Then Tommy would tear it away from her. More tears. To make Tommy understand what it felt like Jack tore it away from him. Now a choir of tears. So before I can get there Michael has taken it away and put it on a shelf only his greater than 6ft frame can reach. Even more tears. You get the picture! Life is back to normal at the Krause house!!

If all goes well and Peter bounces back, I am thinking he and I can take a trip outside of Colorado Springs for the day and feel like we got our own vacation – dreaming big! Rumor has it the animal shelter in Peyton has a big dog named Clifford that takes visitors. Given that what Peter loves more than anything else in this world are dogs – that would probably make his day even more than the therapy dogs that visited him at the hospital.

Thank you all for all your thoughts and prayers – they keep us going!



Peter Bear Hospital Update – July 8th, 2012

Two steps forward and two steps back makes it about a break even kind of day for Peter. He had a horrible night to say the least. Dry heaving, really angry, tossing around, hitting, unable to settle down and demanding huge quantities of milk. There was little to comfort him. Finally around 5:30am he wore himself out and we were able to somewhat sleep from 5:30am – 9am when he woke him his normal angelic self and ready to snuggle. I was worn out and exhausted from the possessed version of Peter I had during the night!

The morning seem to be progressing well – he actually ate yogurt for breakfast with a little coaxing. His oxygen needs were dropping until we were able to take him off. Step forward number one! Then based on his enthusiastic drinking through the night, we were able to turn off the IV fluids. Step forward number two! He enjoyed the freedom that came with less tubes and was in a good mood. He relented on Clifford until 2:15pm – so that was a record. Instead we played with toy cars that rapidly progressed into Peter throws cars, Mama picks them up. Then lots of time playing on my phone and checking out pictures of his siblings that he misses so much.

Peter happy to be tube free even for just a bit – July 8th, 2012.

The afternoon was a treat at many levels – not only did all the kids come to visit him, but he was so happy to have his buddy Thad come to visit (thank you Mindy!). Peter and Thad like wrestling and to not let that moment pass – Peter put him in a headlock. Thad may be a bit younger than Peter, but he is a really good sport about it all and plays well with Peter. G loves him too – often calling him Thaddy which sounds like Daddy…..makes me laugh every time!

I gotcha Thad!

Overall Peter was pretty happy today which is good. But, he was unable to keep his saturation levels steady so had to go back on oxygen. And, despite a great night for fluids – even with all the coaxing today didn’t drink enough to stay off of the IV – so he is back on it. It is awfully disappointing, but for now, we are thankful his fever is under control which should be a precursor of improvements. His labs were not good today, as we had expected, and his ANC dropped further. Hoping it will pick up here soon and he will be closer to coming home.

With all that said – Peter needs to have 14 days of IV antibiotics which means that even if he gets discharged he must remain “accessed” at the port and we will administer the IV at home. It also re-affirms that Peter can’t make the trip to Montana as he is just too fragile. Still waiting for a call back from Denver regarding his port – and while signs would indicate there was bacteria colonized in his port – the status of his lungs is too weak to put him through any surgery at this time. That will be re-assessed in a couple of weeks. However, it further reinforces the need for the IV antibiotics through the port to fend the bacteria off. Or that is what I gathered in parent terms on little sleep this weekend.

So all in all probably a few set backs in the last day – but still a significant improvement over when we arrived Thursday. We are optimistic Peter will be home sometime this week – and he and I will stay put in Colorado while John takes the rest of the kids up to Montana. It is heart breaking to miss another planned family vacation – but I am hoping the kids will have a great time and create memories together. If all goes well Peter will be my helper on a few de-cluttering projects around the house.

John is spending the night with Peter as I need to work tomorrow – praying that they have a peaceful and healing night!



Peter Bear Hospital Update – July 7th, 2012

It has been some long tough days. In following of my sorority tradition we will go with the pro-con-pro approach to this update.

Pro – Peter is not on a ventilator. Despite coming very close to needing to be put on a ventilator, Peter was able to pull through. While still not breathing “normally” he is doing much better, his heart rate is improved, and he is requiring less oxygen to remain saturated. His lungs show damage but the fighter in him is so far getting him through this set back. We pray he can continue to do this as we know his body is still under attack.

Con – Peter was hit with a double whammy – he has pneumonia and what appears to be aspiration damage to his lungs. But, he also has a bacterial infection in his blood. At first we thought he had maybe aspirated water while playing at the park and contracted the bacteria that way. However, after doing shift change with John so that I could hit the grocery store this afternoon I got a call from the same lady at the health department who called me in May when Peter was hospitalized. Turns out Peter has the same bacterial infection he had back then – which is not only rare to get it, but even more rare to get it twice in 6 weeks – leading us to believe that possibly his chemo port is to blame. Calls were made up to Denver and more discussion is needed tomorrow – but from a parents standpoint at least it seems highly unusual that he would come down with the same rare bacterial infection twice following his port being accessed. While I hate the thought of putting Peter through surgery, if it will prevent us from these racing to the hospital with a very sick child it is well worth it. We pray the right decisions are made to keep Peter healthy. He is on some mega doses of antibiotics and alternating Tylenol and Motrin. If not his fever spikes in no time – so we know he is still working on turning the corner. I had understood that his fever peaked at 103.8 degrees – but come to find out he was closer to 104.5degrees. His guardian angel must be exhausted too!

Pro – Peter has perked up. Sometimes to be crabby – but he is no longer in the lethargic comatose state he was in Thursday. Yes, we have watched Clifford about 100 times already. Tried doing Blue’s Clues but that lasted only 8 minutes. He played on my phone, but really just wanted to see pictures of the kids. He got very excited to talk to them on the phone. He misses G an awful lot, but was beyond excited when Jack and Tommy came for a visit. They got him excited to race toy cars around his bed and hid behind the curtains to play “SURPRISE” over and over again. He smiled big as they tried singing songs to him – none of which they could really remember the lyrics. While he refuses to eat or drink – we think his throat is sore too – he was happy to drink some cool mocha frap. He might be smiling big for a while tonight on that drink!

John spent the afternoon with him – and I am headed back down there now – but wanted to be sure to get an update out. I will update again tomorrow after we have a clearer picture of the plan ahead. Peter for sure won’t be headed to Montana in his fragile state, so it might become mama + Peter bonding time as John ventures north with the rest of the clan.

Thank you for all your support and prayers!


Peter Bear in the hospital again…

Yesterday Peter was the picture of health and happiness as he ran around the park. This morning he tried to bribe me into Starbucks by sneaking up on me and showering me with hugs and kisses – but he was fasting due a sedated treatment scheduled for today – so hugged and kissed me tighter hoping I would change the rules. A couple of hours later I could hear him crying while I worked which broke my heart – I figured he was hungry and thirsty. John came down to tell me he was taking Peter in early but he had a temp that had reached 102 and climbing, and was dry heaving. We believed it was likely a result of dehydration but still worried.

After getting to the oncologist he settled down for a period of time but the decision was made it was too risky to do the lumbar puncture under sedation given that he was dry heaving until he would vomit what little fluid was in his tummy. He was hooked up to IV and given some medicine. He was so lethargic he slept uncomfortably through most of it. Then time came for the chemo infusion when as John described “Peter turned shades of lots of colors – all the wrong colors”. The ambulance was called and Peter was raced down to the hospital.

For the record I raced the ambulance there and beat it by a long time!! Sitting in Peds waiting for Peter to arrive was painful.

By the time he arrived he was on 1/2 liter of oxygen, saturating in the low 90’s but elevated heart rate and breathing slightly elevated. It went down hill from there. In no time at all he was on 3 liters of oxygen, heart rate over 170, painfully taking over 80 breaths a minute and wincing in pain till tears ran down his cheeks as he shivered with a climbing fever. He would snuggle up close to me seeking comfort and warmth until in desperation he would throw his head back trying to get more air as his tummy area retracted. We had a wonderful nurse who made sure the PICU doctor came to see Peter, and then again, and then again. She kept him informed of all that was going on – and I could tell we were getting to point of transferring to the PICU. I felt a sharp contradiction between wanting to hold him tight as if I could transfer healing power to him, and wanting to shout out “put him on the ventilator and stop him from suffering!”.

Peter was on constant IV fluids, received a couple of knock-the-socks-off antibiotics, breathing treatments and CPT to help him. He couldn’t sit for the x-ray without some support and shook uncontrollably as tears rolled down his cheeks. After a couple of hours and a lot of Motrin the fever started to drop and he started to perk up. He had slept restlessly in my arms most of the late afternoon and evening. By the time John arrived to the hospital tonight, Peter was sitting up and happily watching Clifford. Using single words to try and explain what was happening and hugging us a lot. By the time I left I could feel the fever was starting to climb again, his breathing was picking up and he was wanting to lay down – but, with smiles on his face is clearly in for a long night of wanting to watch Clifford over and over and over again. Watching it each time as if it were the first despite the fact that we watched 1,000 times last time we were admitted.

We don’t know why this happened. Last week he had the best cardiology appointment ever! His pulmonary pressures were amazingly good, his cardiac function was near perfect and we were getting ready for a sleep study to hopefully take him off of night time oxygen. And all that was at the peak of the fire and the horrible smoke we were sure was going to cause him to fail his cardiology visit. At this point we doubt this was related to the fire – but as we were getting ready to head up to Montana late next week – this has reminded us yet again how fragile Peter really is, and how fast he can go from the picture of health to struggling to breathe.

Peter, get better and we will take you back to see the waves – promise!

I don’t know what we are going to do about the trip – but I know right now I am so thankful that Peter is already feeling better, not on a ventilator – and we pray is on the road to a speedy recovery. On my way home to spend the night with the kids an ambulance raced past me headed to the hospital. And I prayed for that patient and their family – and hope that they are as blessed as we are with the local and virtual community of support constantly keeping Peter in prayer. THANK YOU!


to hell and back in a week

Colorado Springs will never be the same. As I stare up at our gorgeous mountains with burned trees and rubble of what was a home, I know we are changed at so many levels.
Ten days ago I drove the kids to Costco. Headed down the road I noticed two small plumes that appeared to be in town. I turned on the radio where the DJ announced there was a small grass fire of under 3 acres and it was being taken care of already. An hour later I left Costco and there was now a lot more smoke in the area. I turned the radio back on and they said 150 acres and crews were fighting it. I headed over to my grocery store on a bluff closer to the fires. As I drove down Garden of the Gods Road I watched dark gray smoke grow out of itself and take over the horizon. I reached the grocery store I could even see some of the flames. Another hour passed and as I headed home the fire was reaching 600 acres. It was burning fast. A short time later our neighbor let us know we were on voluntary evacuation. John and I walked around the house gathering essentials and getting them ready in the living room should we need to evacuate.
Sunday came and the fire grew away from us. Monday came and the fire grew even more. Tuesday came and I still felt reassured by the news that the two containment lines defending the NW side of town were solid. I prayed for the folks in the areas evacuated. Working from my basement I was oblivious to what was going on around us. John was on the far SE side of town away from what was developing. Alexandra on the NE side of town could see from afar that the fire had taken a horrible turn and right into the city. She texted me madly – which I am embarrassed to admit,  I didn’t give much attention as I was working. Finally I walked upstairs into a wall of smoke that burned my eyes and a blazing heat. Immediately I closed up all the windows and started calling John. He was having a hard time getting home due to the cars exiting our area. I tried to hose down as much as I could around the house.
At that time we were on pre-evacuation orders but the areas to the west and northwest of us were mandatory. We decided to take our time to let the folks that needed to get out safely. I had dinner cooking and John was going to bathe the kids as I packed a few more items. Down again in my office packing up my computer I got the 911 reverse call. It is a contradiction of crystal clear and blurred memory of the call – “…your residence has been identified for immediate evacuation…..leave now…..fire is imminent – leave NOW!”. The kids safely in the basement John and I raced to get things loaded into the car. We stood there for a few seconds perplexed. Watching cars racing down the road packed to the brim – why did we have so much space still left in the cars? Documents – check; Peter’s chemo and oxygen – check; computers – check; scrapbooks – check; quilts made with love and full of prayers – check; 3 days worth of clothes – check; jewlery and Peter’s Beads of Courage – check. We determined that with all we love about our home, there is little that we couldn’t replace. One more hug as we looked at the house we didn’t know we would see again and loaded up the kids in the van. As I backed out of the drive way a water tanker pulled up and took position in the cul-de-sac across the road from our home. That scared me.
As we raced down the road I didn’t know how near or far the fire was – just that I needed to get out. Fire trucks and policemen flying up the road as I headed down. Coming to our intersection I assumed the normal process of waiting for my turn to go. Nope. The roads in and out of our neighborhood had become a four lane road out with emergency personnel rapidly evacuating us. Reality was starting to set in. The further away I got the more smoke I could see and the sky was turning an orange and black glow as the smoke thickened. The news anchor choked up as she announced the Flying W Ranch was gone and read the statement from the family. I choked up with her – we were supposed to be there with family this August.

evacuation – June 26th, 2012

When I got to the interstate I jumped on it and headed two exits up. As I pulled off the interstate I got my first full view of the west side of Colorado Springs in flames for what appeared miles long and the sky over us was turning darker shades with a glow of red. I slowly made my way to the Walmart parking lot to meet John. As I got out of the car and walked towards the view of our town burning up I think the shock kicked in. I e-mailed my parents and simply typed “I think I am in hell”. It looked as if the earth had opened up and unleashed flames and devastation of epic proportions that raced down the mountains leveling homes in it’s path. The city appeared to have a dome over it as I could see nothing but dark evil clouds in any and every direction swallowing us.
We are blessed that John has family in town – and my sister-in-law opened her home to us. I felt as if I was in shell-shock state for about 24 hours. I didn’t know what to do or think. I didn’t know what we would go home to if we would go home at all. For the kids sake we kept the news off in the family room as I didn’t want them to see the footage over and over and over again. That night I tossed and turned as I realized we had left the childrens’ baptismal gown home together with the plates I had hanging in the kitchen that I had painted for each of them. Wednesday night the routine of cooking and cleaning took over and suddenly there was some normalcy and purpose. Thursday and Friday I worked – an endless operation of virtual fires to fill the mind, stress the body, and drown the soul.
A little after 8pm we found out we could go home. I was working still – shut down my laptop and excitedly packed up to come home. Afraid of what we might find we were relieved to find that our house had been protected. Our home was moistened, some things moved out of the way, and spotlights around our yard turned down – most likely to allow the ember chasers to keep us safe. They did! The worse smell in our house were the dirty dishes. I had been afraid to turn on the dishwasher should the power be cut and the old machine leak causing other damage. By midnight we were ready to crash. Normalcy was back in our home – Alexandra snuggled up with a book, the boys in bed, Michael playing a game, Peter pulling all the books off the shelf (again!) and G snuggling up to squeeze my arms for her comfort ritual.
Yesterday was a week from the day I thought I was on the edge of hell. Fire has scarred our mountains, taken 346 homes from their families, and two lives. We are scarred but we are stronger. Over 30,000 lives were evacuated yet only a few hundred reached the shelters – most were embraced by family and friends. Shelters were overwhelmed with donations. Weary fire fighters pulling into grocery stores and gas stations were welcomed with cheers and gratitude. And while there are many people who every day fought the fire down to what is now 100% contained almost two weeks ahead of schedule – one woman has become a hero who embodies the spirit of Colorado Springs displaying integrity, leadership and compassion during a tragic time in our history. Jerri Marr has no doubt inspired a few young girls to believe they really can make a difference and save the world! She is one woman with thousands of men and women behind her which have saved so much of our town – and for that we are so, so thankful!
Today we celebrate 4th of July – our independence, our freedom. This fire is a reminder that we should never take anything for granted, and while we build our communities we should always be grateful to the men and women who keep us free and safe.  God bless us all!