Happy Birthday Daddy!

Dearest Dad,

You are the BEST Daddy ever! You work hard, play hard and love with all your heart. You sacrifice so much for us and we appreciate you! Mum loves you so much and says you are her very best friend. We are lucky to say we all belong together.

HAPPY 29th BIRTHDAY!!

Love,

LuLu and Jones

True Beauty

Thanks for the bows Rex girls!! I wear them allll the time!

Thanks for the hairy DNA MuM and Dad.
*****

I'm exhausted from living in a world where people are judged so harshly because of what they look like. Some of the most beautiful people are ugly on the inside-yet valued so highly by the public. Others, by the "worlds" standards may be overlooked, missed, looked down on...but are so incredibly beautiful- the only kind of beauty that really matters.

Before my first date with Mr. Badger I was incredibly worried, maybe even obsessed with my weight and appearance. James, without knowing helped save me from that incredibly shallow place I was in. He cared more about what was on the inside than out and my healing naturally began. I know he thought I was cute...or whatever and I definitely thought he was the most gorgeous thing I'd ever seen, but our relationship was anything but superficial from day one. My Mr. Right combined with a great book my friend Miranda recommended called "The 10 Step No Diet Fitness Plan" (look for it on Amazon for a penny plus shipping) flipped a switch in my brain and I have been free from diets, crazy work-outs and a sick obsession with weight ever since. I am lucky to live with a man who really loves me-for-me. If I was burned, he'd still love me, if I was crippled, he'd still love ME, we'd be as happy together as we are now. He loves all that is ME for that I sleep well at night (unless I'm in the hospital with Lu). :)

I promised myself a long time ago I wouldn't have children until my demons with body image were won. Jonah came a bit earlier than we planned for (years earlier, to be exact) but I was grateful/relieved that he was a boy. I didn't want a little girl until I could be the example I wanted to be. I wanted to teach her by how I lived, what kind of beauty to be her priority. And well before we tried getting pregnant again- I felt more than ready.

Not to say I don't enjoy shopping, a pedicure or a bottle of self tanner (I'm way pasty without it) but how I look is NOT a top priority of mine anymore and I hope it wont be hers, EVER. It is self defeating, shallow and depressing because when that is what's most important in ones life, you'll never feel "good" enough. Striving for perfection is impossible and all consuming. It is a disease.

I lived it for a time.

Of course all Mums think their children are beautiful, they should and I do. They are. London's...eyes, that hair, her million dollar gummy smile-all so delicious, but without a good heart which I know she has- it means absolutely nothing. I will praise her for being sweet, being smart, being funny...not for being beautiful. I want her to be a girl, a woman of substance.

I believe in Heaven. And I know it will not matter one bit there what we looked like on Earth-we will be seen for our hearts, our inner beauty and it will be what we did with our lives on Earth that will make us "beautiful" in others eyes, God's most importantly.

I will not buy magazines printing about someones weight loss or another persons weight gain, best/worst beach bodies, crash diets, how the celebrities did it etc. etc. I will not give that my money, my time or my attention. London will not ever hear me complain about weight or wrinkles. She will see me respect and admire those who act decently, treat others kindly and serve without expecting anything in return.

I feel more confident when my focus is on my inner beauty, what I'm doing with my life-and not what I look like. We live in a scary world and if a Mum isn't setting a healthy example for her children (boys too), who will? A BIG thanks to my own Mum for not ever letting me hear her say she was "fat" or complain about her appearance when I was young and so easily influenced. She does complain now and I get mad at her. She is crazy beautiful inside and out. She's the best woman I know. I pray LuLu will be beautiful from the inside out...

xoxo

lizzie

alpha-1, liver mum

As Dorothy would say- there's no place like home

"4th and final day,I'm going home!!"

Baby behind bars

A visit from Bubby

We came home Friday afternoon and it's been nothing but a whirlwind since. It's always good to come home but hard to get caught up. The house doesn't clean itself. Bills keep coming, food rots, dogs that are deprived of their master get board...and naughty.

I don't come home well rested, because it's nearly impossible to get any sleep when we are admitted to the hospital. So that means I am emotionally drained cause I've held it together for so long as I've needed to be it 4 days or 24... I miss my James terribly while I'm there because he is so busy working and caring for Jonah that his visits have to be relatively brief. Our thanks to Grandmums and others that help with Jones too...

Just to make things more interesting this week, I slept wrong the first night in the hospital because I woke up and was unable to use my right hand...and haven't been able to use it much since. I was diagnosed with Radial Nerve Palsy which is just a fancy way of saying a pinched nerve. So now with physical therapy and a sweet brace I'm on my way to a short, full recovery. I'm no good without 2 hands that work, 2 kids require a bare minimum of 2 hands.

LuLu is doing well. We are giving her the IV antibiotics 3 times a day. It feels like much more work than it sounds. It is a sterile procedure which is anxiety provoking and time consuming. We have to start them at 9, noon and 1 am and it takes 70minutes each time time. So instead of going to bed for an hour or 2 one of us stays up til the 1 AM dose to start it...then instead of going back to bed for an hour and 10 minutes and being more disoriented and possibly slipping up on the "sterile-ness" of it all, it makes more sense to wait. Tiring-yes. Would I rather do this than be in the hospital for 14 days more days-you betcha.

I do try to stay positive for as long as I can and as much as I can. It's easier to smile and say I'm fine than give someone a sob story. But, I'd be a liar not to admit that sometimes our life has felt like more than we can handle. That sometimes I just cry and want a break from hospitals and worry. I wonder when will we not feel so upside down and inside out? Pulled in so many directions. Soon, I hope. I'm tired, worn down and burnt out at times. I'm not complaining...I'm just on my way to making a point. Would I have it any other way?- No, because that would mean either London would not have made it or we would NOT have had a year full of hard but rich experiences nor met many wonderful people that we love so dearly.

I'll say it now. I wouldn't have survived losing her. My heart would still beat because I have Jonah and James to live for but I would feel dead inside. My heart is ever so heavy for Mums and Dads that have lost a child. So, I do feel lucky I am ABLE to do all we "do," cause LuLu is here with us. I'm not writing this for ANY sympathy or any praise. So please...no comments of sympathy on me or praise for me. I'm writing this cause I hope that others going through difficult times similar to ours don't feel abnormal if they feel like giving up at times. Or, can't smile for another second. Or, just cant bring themselves to returning phone calls or cleaning their houses or not wanting to get out of bed in the morning. Been there, done that...

I did want to be really private about "this" because I think at the time I was a little ashamed or embarrassed. But since our life has been very un-private this last year as I've been open to sharing our journey with anyone that wanted to come along-I feel it fair to share "this" too.

I am lucky to have an uncle who is so good to me in every way. He always has been, I've been spoiled by him (them) for as long as I can remember. I've never in my life needed any help from him "professionally," until last year. He is a psychiatrist, a very good one at that. I didn't think I was clinically depressed or had anxiety (who was I kidding?)...I just needed to keep pushing through, all things come to an end eventually, right? (side note: he treated Heather Armstrong, a local, famous Bloggy Mum--she sings him praises in her book about fighting depression--I read my uncles "signed" copy a few months ago :))

Needless to say I started an anti-depressant several months ago. It has helped. I didn't think I needed them, definitely didn't want them, felt like if I started taking them that would mean I lost and everything that we were fighting won. I thought it would make me feel like I wasn't strong enough to get through all that was/is our life. My uncle helped me to realize it was my strength of character that had gotten me thus far and....I surrendered, quickly. I feel no shame in taking them and would encourage people that need to seek a little help--to do so. (despite what Tom Cruise might think...) Whether it's for a temporary time like myself or life long for those who battle chronic depression or other problems, it takes a big person to be open to getting to the bottom of it. I am waiting a few more weeks until we are moved and settled then I will start getting off of them. I will say I am grateful for a glimpse of what depression feels like, I am a different type of empathetic for others who struggle-battle-fight it daily. When you are doing all you can--and it's still not feeling better, ask for help. NO SHAME IN IT. (Since posting this I've had a few friends email me with more questions...feel free to do so in confidence if you want to- elizabethbarnum@hotmail.com)

I must also say when life has felt the roughest reaching out to someone else in need has saved me. My family is first, James, London and Jonah's needs always met. But in order to HELP ME, getting outside of my own problems has made me better and helped me deal with my own life. Service is a great remedy for most all problems or at least puts your own troubles into perspective. Try it. You'll like it. (...as DJ Lance from Yo Gabba Gabba would say. :))

xoxo

lizzie

(an often times frazzled-trying to keep it all together, yet always grateful) Alpha-1, Liver Mum

Day 3

Cutest alarm clock, EVER.

" MuM, do my hair. I find it a bit embarassing."

Music Therapy, so much fun! She loved it....

...as you can see.

"...This little light of mine.....,I'm gunna let it shine....." a new favorite for us.

"Bath Time!! Finally you are doing something about this mop!"

"My new friend, Ali" (All-EEE)

London has continued to improve and the plan is to be released tomorrow. YAY. I have so much laundry...cleaning...packing...etc. etc. to do and it's just ALWAYS good to go HOME.

The plan had been to take Jonah to Disneyland this Sunday with our friends Cade, Leslie and their kiddos. We were going to leave LuLu in very capable hands while we soaked up some one-on-one with Jonah, since he really hasn't had any of that this last year or been to Disney ever. (may be (is) due to mine and James' lack of liking Disneyland, I know we must be evil) But, Jones will LOVE it-he deserves it, and the Smiths were gracious enough to let us tag along. It seemed like great timing when we planned it but as we know "things come up."

With London's hospital stay we felt like one of us should stay back. Naturally, James volunteered because he's awesome and Leslie has been a BF for 25 years....so my sister Julia is going in his stead (everything has been paid for, Jones has been counting down the days) and bringing her little Noah along too, they are both in need of some R & R.

London will go home with a 14 day IV antibiotic and then we will have her broviack removed. (sigh of relief) One less thing to be ultra-paranoid about. The only downside is being poked each week for blood draws rather than the ease of the central line...but I'll (she'll) take it. She's tough. She can handle a few needles. The risk for infection is so high with central lines. She will be so happy to start taking baths with her brother and not having to avoid getting her chest wet. Picturing the two of them splashing in the tub together is so normal for most Mums but a huge, enormous victory for us.

Today we had a few visitors. Aunt MJ came by, PaPa and Officer Hayes, Abdul and his son Ali (11). They came down from Idaho for a follow up appointment for Abdul's brain surgery. They brought her some wonderful gifts that she'll love so much! Daddy and Jonah will come up later this evening. Even though she can't say it- I know LuLu misses her buddy.

A better day

Lemme out!

Zoomin.......

Eating AND keeping it down. :) (above pics are from this morning)

Auntie Mary Jane

Last night (above)she couldn't keep her head up, today--a million times better. I can't keep up with her...that's the way we like it.

After MANY tests, some results still outstanding...it has been determined she has an infection in her line that goes near her heart. SO, no one needs to feel guilty (myself included) of who might have given her what. They have been hitting her hard with antibiotics since we arrived and they have definitely helped. She is back to herself this morning. Cruising around our room in her walker, wanting to get out of her tight quarters. Which we can't because we are on the immunocomprimised unit. No one is really allowed out to prevent spreading anything to anyone else that is also immunosuppressed. Totally understandable, but makes for a little cabin fever.

They are running more labs and waiting to determine what kind of organism it is. This will determine whether they pull the line out, treat it with more antibiotics etc. etc. So for now, we feel lucky that this hospitalization isn't because of "liver" problems, per say. She'll fight this and we will be back to life as usual, hopefully home by the weekend. Cheers to LuLu for her sweet, fighting spirit God blessed her with.

P.S. Happy St. Patty's Day. Another, luckily less important holiday spent in the hospital. Didn't know it was today til a volunteer brought me a pot of gold (chocolate) that I've been eating for breakfast. Luckily, I packed a green shirt so LuLu isn't allowed to pinch me...or I'll pinch her back, really hard. (wink, wink) That's how this holiday works, right? She has no green, but I'll spare her this year.

We're Baaaack...Home away from Home

Not feeling hot at all....couldn't crack a smile, steal a laugh--nothin, hopefully tomorrow will be a better day.

catching some zzzz's

LuLu was a happy little bug when she went to sleep last night but when I went in to wake her up at 9 for meds I found her in piles of vomit and not looking well at all. So, I got her cleaned up--gave her the most crucial meds--fed her a few ounces---and vomit again, all over, redo meds. Call Dr. Into the bath she went with a fever over 101 which is bad news for a transplant baby. She fell asleep while I was washing her hair. Lethargic as could be. Then diarrhea, this is just getting worse.

Queen. Book wanted to see her in clinic rather than going to ER (thank heavens) and was told by our nurse to pack a bag. After taking one look at Lu, Dr. Book wanted her admitted.

She is receiving fluids, antibiotics and we are waiting for blood results to come back to help determine what is wrong. This doesn't mean rejection at all...her liver numbers look really good. She most likely has a bug that her body can't fight like the rest of us non-Prograf users. This should hopefully be a relatively short stay. But I never hold my breath...

I left part of my heart in Vernalville

There was a benefit concert for Ashley's family (LuLu's liver donor) as well as 2 other families with ill children in Vernal, Utah. Us Mum's were asked to read our story from the Tribune. Me reading LuLu's side, her reading Ashelys. Emotional, but amazing to stand next to her and feel her grace and dignity even as she reads about her daughter dying and mine living. She's extraordinary. I have so much love for her. My sissy Cydnee sang two songs. One was a lullaby she created from words to a childrens book and the other, her own rendition of This Little Light of Mine- Camie's favorite song to sing to Ashley.

This is Abby, Ashley's youngest sister and Jonah-being some sort of crazy. This weekend was the start of a beautiful friendship for Jones and the girls

Loved that she crawled up on my lap during the concert and asked me how LuLu was doing. Daughter like Mum-ther.

After the concert, which was so rich with talent, we grabbed dinner and ate at the pool of our hotel while the kids (and James,(big kid)) swam til midnight.

Throwing people around...a specialty of his.

If you don't have your swimsuit, swim in your dress. Their Mum feels like life is too short not to. I made a mental note for LuLu when she's allowed in a pool, I wont the lack-of-a-cute-bikini or a really nice dress stand in the way of fun.

Syd (Ashley's cousin), Abby, Jones and Sammy

The whole group!

Friends Forever.

Camie, her dad Grandpa Jerry and moi.

Sweet Camie has been having the arrangement redone that LuLu sent to the funeral. She brought it to the pool so I could see it. She plans to continue to have it arranged every few weeks, my frugal/practical MuM suggested silk flowers...so we'll see. It is identical--I was so confused when I first saw it, until she explained that before it died she took it into the florist to have it replicated.

After swimming I gave the girls matching horses with wings. LuLu has one too. Thought it sweet and appropriate as we know Ashley is surrounded by angel horses at all times. Camie told me Abby hasn't seperated herself from it since. It is a permanent fixture in Lu's crib.

Daddy and Jones watching YouTube clips in the room... Today Special. Remember that one?

Good Morning BEST continental breakfast ever at the Marriott. We will be back to see you.

My beautiful MuM and Dad also went with us. We had a great time together and they loved getting to know Ashely's family better and attending church with them Sunday morning. I got to use Ashley's Bible. It was an honor.

Jones passed out right when we started driving home and slept the whole way. I uncomfortably rode with this huge box over my head. It was a lamp we won at the raffle from the benefit. We didn't know what it looked like so it was a fun surprise when we got home. It's really cool.

Returned from our overnighter to this little LOVE of mine. Lucky MuM, I am. Lucky, Lucky MuM. We are loving life.

MY PSA--GET NAKED...

(if you, like James don't know what PSA stands for it's Public Service Announcement)...and go see your dermatologist. Well go see your dermatologist first, then get naked and have a FULL body skin cancer screening. DO NOT BE SHY. If you are a close friend or family member of mine you probably have been nagged by me already, but for the rest of you not fortunate enough to be bugged in person, here it is.

Though this has nothing to do with LULU, I feel it important to spread the word to as many people as possible. I had my first skin cancer screening 6 years ago after a girl James went to high school with died of skin cancer. She passed away within a few months of it being diagnosed, it was a wake-up call for fair skinned me and I have avoided the sun ever since. I too had early skin cancer and had surgery on two areas that were early enough to "cut" out rather than starting cancer treatment. My doctor had already arranged to send me up to Hunstman Cancer Institue but we got a second opinion with my pathology report and opted/felt comfortable with surgery and follow up biopsies. I've gone every 6 months (I drag my olive skinned husband too) since with the exception of this last year being so busy with London and spending more than my share of time in Doctors offices and hospitals.

I am very glad I finally listened to the still small voice inside me to finally make the appointments and just GO. I just got the call from my PA and the one mole/freckle he biopsied is cancerous. I am fine....not even worried about it just grateful I went. It will be removed by a plastic surgeon (it's on my neck) and I'll be good to go.

I asked him how much longer I would have needed to "wait" for this to have been "bigger and badder" just so I could tell friends, family and cyberville how time sensitive detecting skin cancer is. 6 months to a year was his estimate before I would have required some serious cancer treatment. I am again, so thankful for modern medicine.

So to all of you: please go see a dermatologist--it may save your life. In Salt Lake I really like Dr.David C. Hansen (801) 581-2955 or Matt Francom PA both in Murray and both excellent! (801) 268-9673. Don't be the judge of what you think looks scary enough to be seen. I've never had a horrible looking mole/freckle that I was worried about, it takes the eye of a skilled professional to detect cancer. Most skin cancer occurs later in life due to severe sunburns as a child. (that's me!)

Please, please go..... Then make all your friends and family go too. Early detection is KEY.

xoxo
lizzie
Alpha-1, liver Mum

TEAM DONATE LIFE

A 5-year old took this stunning photo. Thanks Bost! We are missing a few team mates, will get another picture at our next team meeting.

James and I are running the Wasatch Back/Ragnar Relay in June. For those of you unfamiliar with this craziness of a 188 mile run that people do, me now being one of them--it's a relay that lasts approximately 24 hours. I've been asked by friends to run it the last several years and always had good excuses. Pregnant, want to get pregnant, just had a baby, would rather sleep that night than run, no thank-you, that sounds like a horrible idea...etc. etc.

But this year, when asked by my friend Jenna to join their team (mostly couples) she caught me on a really good day and in a really good mood. Feeling like I could do most anything...as I had reflected on this last year of our lives. I enthusiastically told her to sign us up. James was obviously in a good place too, because he agreed to run. Mind you, neither of us are runners. Don't do it, don't really like it...

Jenna said we needed to come up with a team name to register. So I got to thinkin'....and here's what I thought: Let's have a cause, let's make this bigger than 12 of us trying to make it from Logan to Park City. And soon enough "Team Donate Life" was born and will maybe be around next year and many years to come if I live to tell about it.

We are running to help promote organ donation and awareness. There is such a great need for donors. I think everyone would want to be a donor if they were educated on the facts or could see a little face like LuLu's and know she wouldn't live if someone wasn't willing to give.

We will decorate our vans with flags, posters, pictures and information spreading the good word about being an organ donor. Even if we just change one persons mind about checking YES I'd consider our run a success, but our sights are set much higher. Maybe we will even find a "Good Sam" to donate a kidney to one of many, many people on dialysis waiting their turn to have a normal life.

Fellow cyber-friends who are waiting for better parts (not just in Utah-anywhere in the world) and would like to be a part of our "team" (no, you will not have to run, but I'll stick you on our van)- I'd love for you to email me, attach of a picture of you and tell me your story. i.e.: your name, where you are from, the organ you are in need of, what the cause/underlying health issues are etc. etc. My email is elizabethbarnum@hotmail.com I'd LOVE to hear from you and WE would love to run for you.

I'd also love to include people that have benefited from organ donation. Please include the same above information but also include HOW it's changed your life. My deepest love to those waiting, and to those that have given, what HEROES you all are!

xoxo
Lizzie
Alpha-1, Liver Mum