Saturday, November 3, 2012

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.


Wednesday, January 4, 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...

Sunday, November 13, 2011

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.


video link below:

Thursday, October 13, 2011

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.


Monday, September 5, 2011

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.

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