An ode to Bob Marley- every little thing- turned out alright!

 

Life has been extremely busy but beyond good at the Badger home.

Despite 2 or 3 ER visits for fevers/minor illness, some weird labs mandating numerous consecutive blood draws and a lot of worry on my part, regular clinic visits, regular blood draws, twice daily anti-rejection medication, a weird but resolvable period of time balancing LuLu's Prograf level and liver enzyme numbers- (that was a mouth full) we have had a phenomenal 16-month stint without being hospitalized. (high kick, toe-touches...GO LULU!, that hurt my groin because I am no longer a flexible cheerleader like I was 13 years ago- but she deserves a little cheer) 

I never could have imagined we'd actually go more than several weeks or a few months without the interruption of a hospital stay in our lives.  It has only been the past few months that I'm finally no longer waiting for the other shoe to drop.  Maybe we will ride this wave for quite sometime before it crashes and we return to Primary Childrens Hospital, IV's and solitary confinement in the ICSU, I ought to just enjoy every minute until then.  And, I am.  It's been a rewiring of my brain not to think of every move we make in terms of "LuLu could get sick...if we-________" fill in a very normal, outside of our home activity such as a movie in a theatre or the aquarium.  I know she really was given a literal second chance at life the day she was given Ashley's liver- and I have to let her live. (have to, have to, have to...note to self)  I don't plan to home school, (which I would totally suck at anyways) she is in traditional preschool---and it's the traditional path we plan to stay on as long as we possibly can.  She's in her second year of ballet with her best little friends and it still feels like a blessing from above every Tuesday as we gear up for dance.  We've gone to movies in theatres, museums, the zoo, vacations, Disneyland, every park within 20 miles, play dates in other peoples homes and here we still stand. (visits do and always will exclude restaurant playlands and riding in the carts at grocery stores that have a car on the front end)  I don't follow her around anymore spraying everything before she touches it, (well sometimes I do when I didn't forget the bottle in my trunk) though I want to in my heart every single step she takes.  Germs to me are like the monster under the bed, boogy man in the closet, the creepy guy in the van with no windows.  Actually, we own a bright neon green work van with no windows- but at least it's a tender, sweet, cute, young Latino boy named Tonio driving it.  Next time we will invest in windows.

I still wish I had her in controlled, steralized environment every minute of every day, but know it isn't easy to do realistic.  We could try putting her in a bubble, but feel like we might get called in to DCFS-- and can't have any calls like that until AFTER the adoption is finalized. ;)  I remind myself daily, some times hourly that this girl truly deserves to have a life full of rich experiences, friendships with kids with snotty noses and coughs and personal growth.  And IF/when we have to make stops along the way in the hospital to overcome illness- it will all have been worth it in the end.

I'm so grateful I no longer self-identify as a mother of an ill child though I'll never forget that feeling or my empathy for other moms walking in those shoes.  That's all I felt like I was for a few years-- now I am just a mother who has to be careful with her precious, fragile immune-system-girl because of what may be trolling around the next turn. 

I'd say we have been very lucky as our liver friend Lydia battled cancer after her transplant, our little Harmonee-major rejection issues for well over a year...many people are not able to hold on to life before an organ becomes available.  The woman who received the other half of Ashley's liver died within the first several months post-transplant.  I really wanted to meet her one day, put Ashley's liver back together- side by side with lulu.  Maybe in Heaven.  I know it could have been much harder, much worse or the worst tragedy in my life to lose her, but she is here and I am extremely grateful.

Our magic, SECRET recipe that I plan to sell for a lot of money, become mega rich and make some major headway on the worlds orphan crisis (146 million and counting fyi) is this:
16 cups of dumb luck mixed with-
2 1/2 cups of crazy, neurotic Mom & Dad
4 cups of Clorox bleach
dash of pink glitter
5 cups Organic Almond Milk
Daily princess vitamins
a smidge of Barbie hair blended with a Crayola crayon
Mix all together,  Bake at 450, for 48 minutes

Cool, serve over ice cream while you pray with your fingers, eyes and toes crossed that the health Gods will forever be in your favor.

xoxo

Merry little Christmas 2012

Some where over the rainbow...LuLu turned 3!

my little dorothy...she knows better than most 3 year olds that there really is                                
 "no place like home"

Another fun birthday celebrated with the many friends and family who are dearest to our hearts. Here is to a wonderful year ahead London!

They say it's your birthday!

Earrings, take 2. (last round closed up) She was a champ, didn't cry- didn't even want to sit on my lap...I guess that's what happens when you have a medical baby. Needles don't scare this girl.

Had pizza and presents...with bubby, daddy and aunt mary jane.

...Cute Christmas card from MJ, will frame this and put with my holiday decorations. Sawyer will need to see that Santa can be black too...

Happy 3rd birthday my dear girl. Can't believe all you've been through in your short life... we love you so. so. so. so much. Party pics coming...

14th Birthday

Ashley drew this picture shortly before dying...entitled Ashley's Heaven. We know there are horses there.

Ashley, LuLu's liver donor, would have been 14 this last Monday. Her birthday is a tender day for us. Not a day goes by that we don't think of her, pass by her pictures through our house or send a prayer of gratitude each night for her and her family. But to wake up Monday morning knowing it was HER special day that should have been celebrated rather than mourned makes it all so real and sad.

My eyes weren't dry that day for more than a few minutes at a time as I thought of Ashley, Her DAD, Her sisters, Her Grandpa, Her cousins, aunts, uncles & friends. But most of all for her dear, sweet MOM. I put myself in her shoes, knowing it could have been me to lose my daughter and how I would be feeling every moment of every day if that were so. Life would be impossible, yet so many people carry this sorrow every single day. I love Ashley's mom so much. She is a wonderful woman, so generous and so kind- it's not surprising that Ashley was who-she-was at the ripe age of 12 when she left this world behind her.

I really do wish Ashley was blowing out 14 candles, had planned a fun party and was spoiled with gifts. Maybe a horse? Would this have been the year she'd get a horse? I couldn't help but wonder.... I'd give anything to be connected to her and her family a different way. Or simply not to know them at all if it could mean they had Ashley back.

After LuLu's preschool we went to pick up balloons. Her favorite colors, blue and purple, just like last year... 14 rather than 13. London was telling people at the party store that is was Ashley's birthday- if only they what that meant. We wanted to let them go at the donor monument down town but it turned cold and dark too soon. LuLu and Jones let them go to heaven sending each one up with kisses or words of love for Ashley. We sang Happy Birthday to her several times that day but no notes were sung as beautifully than from LuLu as she let balloons drift up to heaven.

In the morning I asked: "LuLu what did Ashley give you?" she looked down at her bare tummy and proudly said, "a scar", "no, LuLu- what's behind the scar?" "Oh, a liver!"

We love our Ashley! Happy Birthday sweet girl. Thank you for LuLu's perfect liver and happy life-no longer being lived in the hospital, in chronic sickness or in constant worry by all who love her. Bless donors and donor families everywhere.

xoxo

video link below:
http://www.youtube.com/watch?v=Gd9t1_X9Z9s&feature=share

prima ballerina

My little Lu started dance about a month ago. We are taking with our dear little friend Olivia and it's a weekly 45 minute slice of heaven. I softly cried through her first class. It wasn't too long ago that I wondered if my sick baby would be able to dance one day. (insert picture of SICK LuLu in liver and kidney failure, or vented and tubed and IV'd to the hilltops) I count my lucky stars that her transplant did come in time. Sweet London gets a chance to do anything and everything in life.

I recently came across this blog that had so many similarities to ours it was uncanny but her little liver didn't come in time. I was hysterical in the wee hours of the night when I finished reading Ruby's story from beginning to end. I thought I was going to have a panic attack, my throat was closing up I could hardly breathe. The grief I felt for this young mom hit me to my core. I spent the rest of the night curled up with London in her crib. Holding her tight and recounting my blessings. I wondered why that wasn't us and what if it was? it could have been....

I was ashamed in those hours that I don't remember all we learned through our trials with London on an hourly or at least daily basis. I had begged James to do bedtime with the kids on this particular night because I had just had enough of them for one day. My heart ached that I didn't tuck them in, read to them, sing to them, kiss them--because I could. My sweet children are alive and well and I gave up a bedtime with them- something that Ruby's mom would die for. I cried for our Sweet donor Ashley's mom and imagined how empty her arms must feel.

So lessons relearned, seeing LuLu in the special glory that is hers rather than such a terrible two. I thank God she has such a strong spirit, it served her well through disease and sickness and I know it will continue to be such an asset for wise, beautiful, tough as nails LuLu. Love you girl.

xoxo
lizzie

Ode to Ashley

Kissing Ashley's name on the Donor Wall.

Ashley Lauren Maynard...can you find it?

LuLu met her Livers Daddy for the first time this weekend and we loved spending time with him, remembering Ashley and eating good food. London calls him LiverDaddy, so cute.

Our parents and almost all of mine and James' siblings, nieces and nephews were at the ceremony and unveiling of the wall. It was a great morning. I'd recommend going to the amazing, beautiful monument that is on the SE corner of the Salt Lake Library. It is spectacular.

Meeting LuLu. He has known her well through her blog but this was the first time they were able to meet as Will lives back east. We appreciate his love and concern for London and her health.

I'm sad I missed the opportunity of getting pictures with Ashleys Grandpa and cousins but are so glad we got to visit with them. Love you Maynard Family!!!!!!!!

Me and my miracle.

PUZZLE, yard sale extravaganza & application sent!!

We have seen on other adoption blogs and loved the idea of a puzzle fundraiser. If you'd like to help us with adoption expenses, you can purchase a piece of our puzzle for as little as a dollar per piece. We will write donors names on the back of the pieces to help us remember all of the support and love we had along the way, and eventually frame and hang this sweet giraffe puzzle in our baby's nursery. I've linked a donate button on our sidebars if you are interested.

check out our family blog to see our yard sale fundraiser:

http://thehousethatjamesbuilt.blogspot.com/2011/08/yard-sale-extravaganza-application-sent.html

Plus 1 please

What started out as a grave diagnosis for LuLu over 2 years ago has led us down many paths filled with sorrow and turmoil as well as amazing, unique blessings.

To name only a few (of the good stuff)... our association with people we would have otherwise never known.
Our appreciation for health and the life of our children in a whole new light.
Our respect for people in the medical profession and all the loving hands at PCMC-- I have always thought doctors and nurses were great (my mom being one of them) but it is different when your child would not be alive without them.
Our gratitude to live in America where we have resources at our fingertips that others can only dream of.
We have been loved and surrounded by friends and family that have carried us through hard, hard times.
Our love for a new extended family that is our donors. And a DEEP love for our Ashley angel.

HOW??? would we grow our family in the future was burning in my mind and heart when we found out that what London had was a genetic disease passed down from both James and I. The seed was planted that evening in February 2010 I just didn't know what it would look like when it bloomed.

The chances of having another child with Alpha-1 is 1 in 4, a carrier for the disease 2 in 4. For a little while I toyed with the idea of "taking our chances" and accepting whatever God gave us. We would never take back our LuLu and the same would be said for a future child ill or not. Fast forward many months of seeing her suffer, thoughts and times of actually coming close to losing her, waiting for another child to die so that she might have a healthy liver and finally flourish... We will not be playing with those odds. I can't do it to myself, my family and especially not another baby.

We researched fertility treatments. Genetic testing. Adoption. Just being happy with our 2. Until our trip to Haiti in March we were still undecided though adoption seemed like the best decision to us. After Haiti it was all I could think about, in particular an orphaned child from there. It was a major disappointment for James and I to learn definitively that Haiti would not be an option for us because of age and marriage requirements. It felt like a deep loss as we love the children there who are so desperate for a home. We went back to trying to feel like maybe our family was complete with 2 as we didn't feel like genetic counseling was for us nor did domestic adoption feel like the right path for us.

We are still so sad that Haiti's red tape and broken system prevent adoptions from happening but are grateful for what we saw, learned and felt there and knew they weren't the only orphaned children needing a Mom and Dad...and a Jonah and a LuLu. So, thus the search continued and has led us to Ethiopia. It feels good again and right. It will be another road filled with uncertainty, ups and downs as well as great lessons that will be as rich as the ones we have experienced the last two years. God has led us in this direction and we are following a little blindly as the expense of adoption, especially internationally feels like a road block that will be impossible to get around. But, as I have heard a million times in my life- "Where there's a will, there's a way" and that shall be my mantra.

home for the fireworks

I didn't blame her for being mad after the day she had and then to come down and find the TRAIN wasn't on because it was a SUNDAY. Ugh. Poor girl. ;P

Bath time in the hospy. She is so big we graduated her to a real tub rather than a baby bucket. Just had to keep her IV sight dry...She was having a blizzzast.

Then some special friends came for a visit. Nate my friend from MHS and his sweet wife Suzanne who has become a dear friend of mine. Thanks for the Little Mermaid Squeekies. SHE loves them and we have yet to lose a singe one. Loves to you Gage, Kate and Eva!

********************************

We were able to be sent home in time to watch fire works on the 4th with friends from our neighborhood. We cancelled original plans to avoid crowds and get the little toad to bed at a decent time. We enjoyed visits in the hospital from friends and family and had such a great nursing staff. I will keep this positive and NOT go into the awfulness of London being cathed for a urine sample, other than to say it will never happen again. Momma wont allow it. We will go about getting pee the old fashion way. Wish I would have stuck to my guns and said no. It wasn't good for anyone, poor LuLu was so confused, hurt and felt violated. There I go. I will stop. It was among the most awful 15 minutes of my life. Love you Sweet London. You are the bravest of the brave. Stay well now...for a while anyway. xoxo

make plans, cancel plans

the bow was a nice touch, lulu appreciated it....

woke up from this nap to my mom's beautiful face...she is still my comfort just like i'm lu's. i would have loved for my mom to hop in the crib with us!

it was going to be a really fun weekend. dirt biking this morning, birthday party for the kids, staying at a friends cabin tonight...throwing a surprise party for my sis-in-law tomorrow (SURPRISE SARA!).... but it's not unusual for us to avoid a crowd to keep London well or to cancel the fun stuff to get LuLu better. so instead we headed to PCMC this morning for a (short) stay...we should be able to leave Monday, knock on wood. we will make up for the lost fun next weekend. London's temperature got up to 103.5 which is an automatic hospital stay for her.

i'm not saying that watching the little mermaid on a continuous loop isn't fun....just not AS fun as plan A. it always makes me take pause to reflect on how grateful we are for modern medicine, the care we receive at Primary's, for our donor Ashley and how fortunate we are to have such a miracle child. she is an impeccable 2 year old. i hope i'm as proud of her as a teenager as i have been in her short life thus far.

her labs look good, she's receiving fluids and IV antibiotics, urine/stool samples look okay, so not sure what the cause of the fever- probably just a typical bug that kicks her cute, little immunosuppressed butt.

get well soon my little lu.