Christmas Eve

** Emerson and Makenzie doing the Happy Dance in front of UCSF - 12.23.10 **

We are really home, Christmas Eve!! We had Makenzie's ultrasound today and got the best news that her pseudocyst is getting smaller! The nerves riding on this ultrasound brought my stomach to knots every day, Jack calling every bit to hear results, and Makenzie nervously talking a mile a minute to the ultrasound tech about everything ranging from her scars to Santa. When we hopped out of the car leaving Emerson with my sister, Auntie BB, Emerson started screaming since she was scared we were staying in the hospital again. All of us were waiting for the moment to hear the pseudocyst was smaller...and it came at 3:57 pm. While we knew we would deal accordingly if it had grown or stayed stagnant equating a visit to stay at UCSF for Christmas, we are so very grateful to have been given the gift of time together at home.

Some people think that when you get to go home, you are "HOME" and able to just move on to life as it was. But 3 months have passed, and we have a new life that has shifted in so many ways we can't describe. We are all forever changed....forever knowing that life is more precious and the biggest events can happen instantaneously. I will take all those ways though because I sit here in my favorite red chair, drinking mint tea and looking at our Christmas Tree with twinkle lights in our living room I know my two little beautiful babies are asleep upstairs in their own beds. We are lucky and while for whatever reason Makenzie was picked to endure an ultramarathon of medical challenges, we are all stronger and more deeply alive than ever before.

Little stressers of the holidays are just that, little! The big stressers are the kids unable to go home from UCSF for the holidays if ever. But also to me, the big stressers are people who never understand how precious life truly is and cherish the moments of sleeping cherub sweeties, mint tea and twinkle lights in a small house. They complain about what is not happening instead of relishing the life that is happening. One thing I am more sure than ever before is we can't control life, but can control how we appreciate and enjoy it.

Embrace every moment making silly messes in the kitchen with your family, being up with a sleeping baby who is in his/her own crib, sitting at a dinner table with disagreeing family members who make you laugh inside knowing why disagree when you know you won't see eye to eye ever but love each other...and linger longer in every twinkle light moment than you thought possible.

Merry Christmas to you and yours. Let the love of each other fill you up as my family has filled me up. With peace, love, and eternal gratitude - Erin Kreitz Shirey

Running Through Pain

Something that has hit me again and again when out running is how I couldn't take Makenzie'e pain away. As a parent, all you want to do is take away your child's pain, and pass it into you. You don't want to see them in pain, hear how they ache, see them wince at needles or close their eyes because they can't fathom what's next. You want to say "It will be ok, I promise", when you have no idea if that is true, so you don't. As Makenzie was in the hospital the past few months, I was brought to the realization that as much as I would run, it could help and heal me, but never help her the same way.

I have run through ALL of my life's challenges. When a sophomore in high school, I was struggling with an eating disorder I had been battling for 2 years and really was "beating" it. How I found strength and courage to do so was to run...I felt better and stronger after each run. I found that when my legs hit the pavement, a feeling overcame me that even if life was challenging, for those moments on the pavement or trails it would all be ok. Through my own experiences with an eating disorder and running, I realized I wanted to help women and girls with their self esteem through athletics. Hence, me choosing to study in Kinesiology. Then, in my own major that I loved so much, I was date raped my 4th year by a classmate in my department...so I really learned how to run far, long, and faster than I did throughout all my college years on Triathlon team. I healed through each run, stayed in school and finished my degree. There were many days I felt I needed to change schools from the school I loved so much...but I never did and kept on growing stronger each month.

During these times there were very close family friends who died unexpectedly. When all were mourning, I ran to heal. I hit the trails, did my favorite 6 mile loop in Alameda many times through, and came home with energy and open arms for hugging family tighter. When Jack and I miscarried at 15 weeks right after 2002 Thanksgiving break, my heart was so heavy. The next day, Jack handed me my running shoes when he was already laced up and we hit our favorite trail in Portland's Forest Park. I remember the day and run vividly. My Mom flew up to help and I can picture her face expression with a knowing Mom glance, and my husband's face with the pained look of not being able to help either of us but ALL of us understanding the best way to help heal was to run. When Emerson was sick at 7-9 weeks with RSV/Pneumonia/Pertusis, I couldn't leave the hospital ever but for quick bouts to be with Makenzie when family was with Emerson. I feared if I was gone for 30 minutes to run something would happen and we would lose her. But Jack knew me better and at day 8 of her hospital stay sent me home to hit the running trails. Even when Jack was laid off last year and we were trying to figure out what to do with no jobs on the horizon we decided to move back to California on a rainy and muddy run in Forest Park. It was saddening and heartbreaking to leave our trails knowing we had just decided to move back "home", but felt right since we made the tough decision with clear heads running. He has known me so well, knowing I have to run to heal-breath- get courage- strength- hope-feel invigorated-know joy-love- be inspired to get stronger and heal inside. I always have felt that way after ...running has been my best tool to help make life more digestible and understandable.

When Makenzie got sick, I have felt so much more unexpected pain than I wanted to. While I could feel better after running, I couldn't take away HER PAIN! My running wasn't able to help her the same way it could help me. I couldn't finish a run returning to the hospital and heal HER the same way I could work at healing me. I knew the entire time that in order for me to be the best Mom possible for Makenzie and Emerson my runs were as vital as eating nourishing food and drinking water. But with each run and watching Makenzie's body attempting to make miracles happen, I felt discouraged that I couldn't transfer her pain to me so I could run it out. I wasn't able to rub her back knowing that each touch equated peace and knowing all would be ok for Makenzie. But what I could do was run and come home with an inner strength to converse with the doctors, nurses, and many specialists with a clearer mind than when I left the hospital doors. From UCSF I could run to Ocean Beach and bring back shells to share with Makenzie, watching joy in her eyes as we would then imagine being in Hawaii. For those few moments she could mentally escape with me to be on a "beach in Hawaii looking for shells" as her body was fighting an infection within a huge pseudocyst. While I couldn't take her pain away from her body, I could help her run with me to new places allowing her to thrive.

Again, as a parent, you just want to take away your child's pain whatever the pain may be. But if you can't take it away, the next best thing is to take away your own the way you know how to heal and be a stronger and more supportive outlet for them. That is the best I could do, and know that if I was able to find positives and strength in each run Makenzie would feel it and know being positive and strong is the only option.

Gift

Makenzie is home from the hospital- sigh, relief, fear, nerves, loves, hugs, joy and again...fear. I can't help but want her to feel free as a bird after being cooped up for the past few months, yet at the same time I want her to be in our little cage of a house so I know she is safe and won't get sick or hurt. Part of the joy in being home is we can gradually have Makenzie doing things when the busy times with the kids aren't happening. The swings in the morning, hot cocoa at 1:00pm, or a run down the beach in the middle of the morning with me pushing her while she's reading her book. That is what we settled on today, and it was bliss.

To say Makenzie has matured since September 22nd would be an understatement. To say we have all matured since 9-22-10 is a fact that I almost don't want to deal with. I don't like to think of the medical ordeals Makenzie has gone through, the little sweet voice of Emerson asking if she can visit Makenzie or "Is Makenzie still in ICU? Can I visit her when she is out of ICU?" repeatedly, the nerve filled conversations talking about the big issues parents never want to discuss with Jack, or the basic stressors of what is for dinner for the parent who was home when the grocery store was the last item on the daily agenda. But those gray hairs and wrinkles we've occurred are nothing in comparison to the knowledge and skills Makenzie has developed. She is an expert with putting in IV's and will tell you all about it. She is skilled in knowing when she is being distracted from a procedure that will hurt by the luring of a DVD or coloring book. She is aware if the tests done and how her body responds to them.

But Makenzie is also more at peace with being IN the moment than she was before. She is 6.5 years old but has seen life's changed and altered within a moment of a doctor entering the room. Thus, she is able to be at peace with what event and activities we do. That is a gift I wish ALL people had. I don't wish upon anyone the ordeal that has happened to my sweet daughter, but I do wish ALL people had the ability to truly be present and open to what activities are going on. AS the hours of 2010 are dwindling by, how often have you been present and aware of the life around you? Hopefully A LOT, and if not, it is a gift to open up and embrace in 2011. It is a gift I hope Makenzie can share with all people she meets, and for the rest of her life. It is a gift she had me open up again, and this time, I promise to embrace each moment tighter than before.

Tank is filled

Saturday morning began a bit rough...I was itching to run and get some steam out. Jack had his work party the night before, and sadly I missed it but Makenzie and I planned a fun night. We had a slumber party in our buddy, Ryan's room, and his Mama and I got to enjoy some dinner and wine. We all giggled a lot, were grateful to have each other as friends in the hospital, and fell asleep thinking how lucky and far our kids had come. Ryan and Makenzie both are pancreatic anomalies, yet you see them and would never know. When together, Ryan, aged 21 months, lights up and Makenzie, age 6.5, showers him with a special big sister affection. But Saturday morning came and I was aching to have my family of four together, go for an intense run, and have a great day. I woke to an angry Makenzie, late to arrive Jack, and bummed logistics to kick off the weekend. But, in my running clothes from the time I woke up ready to get in the brisk air, I finally did 2 hours later than planned and eventually it felt great!

I started, unable to really move. I made one step in front of the other, was trying to respond to immediate family emails as I was starting my walk to Golden Gate Park, and my body felt heavy. It felt like two sacks of potatoes were on each shoulder, but knowing it was my one window I had to go run. I trudged along, flustered in my head that I couldn't just run and escape mentally so fast. So, I did what I have learned helps me heal best....I crouched down mid warm up jog, covered my eyes and just let myself cry. Oh it felt good! Did you know that when you cry, it is actually beneficial for your body? During that time my phone was beeping again and I hit ignore, I just wanted to escape for a few. I ran to Stowe Lake and started going to the top, my body still feeling like there were potato sacks on my shoulders, but this time a bit lighter from the cry. I did a few repeats to the top and continued to have the dull ache. So I let it out...and shouted...on Facebook that is. Everyone has been so kind about me being brave and secure, when in all honesty I am doing what any Mom who loves her children would do and it has been the most trying and heartbreaking 3 months. I have also realized that part of being brave and supportive of Makenzie's needs is to get mad. So I swore on FB...which I don't normally do.

My post from a normally positive me was, "

Erin Kreitz Shirey On a run in Golden Gate Park and want to shout loudly this deal of being a strong, back boned, steady, nervewracking, secure parent of a sick but incredibly brave child in a hospital for almost 3 months deal-I-o really SUCKS!! Yep- said it and now I can go back to running and listening to techno... Saturday at 10:08am via iPhone Friends Only ·

After I posted it, Katy Perry Teenage Dream techno version came on and those potato sacks were flying off my shoulders. I started jamming laps around the little "mountain" and climbing stairs fast. Repeaters were being done at a rapid pace, sweat was dripping from my now nappy hair, and I could care less. The release of tension and nerves was huge. The fresh air on my skin felt like I was bathing in La Mer and giving myself an energizing facial. I took in the lovely Japanese Gazebo and the tranquility it airs when doing repeats on the perimeter path. I didn't want to stop...but also knew that my tank was being filled. I ran towards Kezar to finish with 15 minutes of stairs and push ups. It was more like sprinting at my 5K pace and legs were burning. Started bleachers blasting towards the top. Now Mumford & Sons were singing loudly to me and my legs were sprinting every other step to the top for each staircase. The physical depletion started to creep, buy my mental depletion wasn't there and on top of my game. At the bottom of every third section, busted out low push ups and my chest and back started to scream for more. My mind started to escape to a little pub in Ireland after a long run thanks to Mumford & Sons and I realized my flustered tank was getting empty again ...yahoo!

Busting up 3rd Ave to UCSF, I knew I would run into the Playroom to Emerson, Makenzie and Jack and couldn't wait. Ran up to the 2nd floor for the requisite Peets Coffee, I was jonesing for my girls cuddles. Now an energizer bunny towards the elevator, smiling at any willing face to accept one and even those who wouldn't, the anticipation bubbles of having my family of 4 together started popping through my stomach. The darn UCSF elevators add to the anticipation too, since they take forever and are your only option onto the 6&7 floors. Once off on floor 6, I could hear Makenzie and Emersons' voices down the hallway. The Kids Playroom is our sanction. I walked in and Makenzie was with Lani-dog, Emerson at the easel, and Jack chilling in between. Emerson looked over with a huge smile, ran over with a hug, and twirled in her tutu skirt. As always, life is good and my own tank was starting to fill....

Tank filling part 2 coming later....

bucket of pixie dust

A friend was complaining about her husband snoring loudly. She was going on and on about how she would escape to sleep in her guest room some nights, but that she was happy he was going to get the breathe patches so she can sleep. I was listening, thinking damn I am so envious you can escape to the guest room to sleep! That sounds so awesome to sleep in a peaceful quiet room, knowing your husband is safe and sleeping (although I know loudly) in the other room in your own house. It sounds like a little slice of sleep Heaven to this Mama whose sleep tank is empty and runs on a few hours of sleep each night. That is how jaded with sleep you get when living at the hospital for a long time.

I am so very grateful Makenzie has become a sound sleeper with being in the hospital. At Children's Hosptial she had 10 days of ICU with beeps and noises everywhere, 25 days of having a roommate, and now at UCSF she is going on 21 days of constantly having an infant roommate. Whenever she falls asleep, I don't allow the nurses to wake for vitals unless absolutely necessary because she is getting rest. There have been many times when reading to Makenzie in the middle of the day she falls asleep cuddled in my arms and I have to go to the bathroom, but I will now move for fear of having her wake up. One time I stayed still for 4 hours, but Makenzie got good sleep. The nights it makes me nervous that if she's asleep, an infant crying all night would wake her up. She used to wake up crying, just eager to sleep and find a peaceful dream to escape her reality. We would rock and somehow I was hoping the magical rocking would secure her a space in dreamland where she was comfortable. She still wakes crying with exhaustion sometimes, but tonight, she is sleeping so peacefully beside me as I am wide awake with the not one, but two new neighbors and their Mom in their "room". Their room is otherwise known as the other side of a plaid curtain. It is so hard, as a parent you have pain for each child. You want every child to feel better, safe, secure and comfortable to have an incredible night's rest.

But my own child is my focus and I am frustrated with my own self for not pushing harder for Makenzie to have her own room because we always thought and hoped it would get better. We love our window and view here. Makenzie has carved a comfortable space here so after getting back to her room from the three-fer room (absolutely challenging experience) I thought we were doing great with just one baby neighbor and wishfully thinking they could be sprinkled with fairy dust and sleep well. But tonight, the baby is the patient and there was no one to care for her sister so Mom has both. I understand that, but now her sister has been up throwing up, baby screaming for an hour or more, and I trying to help Mom and her nurse since Makenzie is sleeping. Hoping, praying, wishing my own angel stays asleep. Come on Tinkerbell, find the sweet kiddos on the other side of the curtain and sprinkle a whole bucket of your pixie dream dust. There is no guest room, couch or even floor in the hallway to escape to find some zzz's and this Mama needs some sleep!

Twinkle Lights

The holidays in the hospital are a rough time, but also a fun time with decorations. On Wednesday night I was determined to find decorations for Makenzie's room. I took a peak at Ryan's room to see where his Mom Carolyn hung the lights. She made it so festive and fun for Ryan, and once we moved from the 3-fer room to our old room, it was easier to decorate! So we have gone through Halloween decorations, Thanksgiving decorations and now Christmas decorations at the hospital.

Jack arrived to spend some time with Bug, see me and so I can work out. I rushed across to the Mulberry Athletic complex, so grateful that UCSF is into progressive fitness, and dove into the Precor. I was sweating like a banchee and didn't care. By the way, what is a banchee, I have only heard the phrase but use it all the time. Lame, I know, but I digest on...my headphones were on and I was reading US to which I am forever grateful. It hit me when I was sweating how intense the recent days were and I started crying a bit. But my tears were blocked by my sweat so I figured noone would notice. And if they did, I would flash my blue parent wristband and hope they understood. I was determined to have an intense and insane workout if my body would allow. And I did. When working out I noticed the faces on the med students on the bikes while reading schoolbooks, running on the treadmill laughing with buddies, and looking as if they should know what they are doing in the weight room since they are med students but with the most improper form possible. I had to hold back from rushing over to help a sweet guy who had limbs as long as I am tall. But I was thinking bout how they are just beginning to learn about the real medical journey they are on. They are at the beginning stages of having to talk with families about their loved ones, and that is an art and special practice in itself. The act of sharing medical information with a family member who has been on pins and needles, not sleeping, feels they are alert but about to fall to the floor, and just awaiting news that says their loved one will be ok. With watching the residents and working with so many, I can see who is comfortable in their skin with answering our (parent's/family member's) tough and challenging questions and who isn't. Toughen up on that piece my favorite residents, as the ones who can perfect the art have huge fanclubs...even if they bring the bad news.

Back to twinkling lights...I left the gym sweaty and full of energy to find decorations at Wallgreens. We are limited by proximity and our legs when exploring around UCSF and for that Jack and I are very grateful that San Francisco has so many incredible neighborhoods. It feels so good to get outside the walls of the buildings too and not for my specific time limited run or workout, but to walk and feel like I live a normal life for a few. When walking towards Cole Street, nobody knows that my mind is full of thoughts about Makenzie and Emerson!! M's pseudocyst blockage, long term changes and potential Type 1 Diabetes, concerns about how Emerson is doing with her potty training at my parents and how she is doing without us, thoughts about how I am a bit envious of my younger cousin who get's to have a fun Parisian adventure over Christmas and I am filled with concerns about my children (lame I know I will one day go, but it did pass my mind), and those of thinking how could Jack and I manage to live in Australia one day when the last 2 years alone we've had Emerson ICU sick-Makenzie dental surgery- his job loss-move from PDX to CA-Makenzie Medical crisis-me halting my business. I know we are both go-getters, but insurance doesn't exactly say "Way to go on trying hard!". So I ran there instead of walking and blew the thoughts from my head, started looking at the lights everywhere, and really wanted to find twinkle lights for Makenzie's room.

I ran around a bit and then ended at my mecca...Walgreens! It is full of cheesy snowmen, tinsel, decorate your own stockings, little ornaments, candy treats for the nurses, and lights! They had a selection that had perfect strands full of 10 snowflakes or 10 stars. I picked the stars so Makenzie can make tons of wishes on them. If she can't be outside to wish under them, she can go to sleep looking wishing on them as they twinkle in front of her. I was bubbling with excitement since I knew she would be surprised!

When I got back and Jack and I did our check in before he had to go home, I showed him everything. You would have thought I found the most premier lights I was so excited. He left and I started to decorate with a sleeping Makenzie inches away. Tinsel went on the bulletin board, snowman with dangly legs on the Emergency Responder Kit shelf, big red and gold ribbon tied through the medical bed, huge snowflakes hung with ribbon on the racks, stockings for Makenzie and Emerson to decorate at the foot of her bed, and star lights taped to the windows and shelf. I turned off the lights and they looked beautiful! It felt warm, peaceful, and like Christmas had entered the room. I couldn't wait for Makenzie to wake up, and when she did, she smiled so wide!

Code Blue

I am sitting in Makenzie's UCSF Room, #647, and have been awake since 5:05 am. I can't get back to sleep, and that is in part because of all the beepings and also because my mind keeps racing back to the code blue page from Saturday morning.

When you "live" in a hospital you digest the noises as part of your existence. You start to ignore beeps, iv- noises, pumps, breathing treatments and machines working at keeping your children alive. But you never can digest the noises of kids cries, moans, and chirps and especially the beeping of Code Blue. When that happens, you hear a mass of clogs and running shoes storming down the hallway to the child in need. You hear the quick talk of medical lingo on the walkie talkies, swooshing of ventilators, hands working at rapid pace to keep a child alive. The intensity of those moments are some that stay with you forever, as you were in the midst of hearing life almost slip by...but being saved by the incredible hands of RN's and MD's...you pray. By the nature of God, because I believe more than ever that there is a God who has embraced Makenzie, my family and our challenges, and I have to know and believe is embracing all the little gifts of children on the 6th and 7th floor at UCSF.

Right now, I'll go back to embracing my sweet Makenzie, who is sleeping in front of me with her lovely French braids down her back and cuddling her little Ali medical bear. She wanted to cuddle tight last night as we talked about what we could do when it is our turn to go home. The nerves of potentially staying through Christmas are floating within her and it would be incredible to be home and soon. It will happen soon, and I am beyond grateful that during her medical challenges the past almost 3 months I have never heard the words Code Blue in relation to her. Almost in ICU....but gratefully Makenzie was never Code Blue.