Tuesday, November 29, 2011

10 Years Ago Today... Ode to Ladybug

hi everyone!
10 years ago today God blessed me with a wonderful creature - Lauren Camille, ladybug. today is ladybug's 10th birthday. at 5:39pm and 17 seconds to be exact. wow. double digits. i'm actually, unexpectedly, having a hard time with it. ok parents of older, multiple kids... how do you handle your children growing up? how do you cope with the fear and anxiety of it all? so far, i've just focused on the positive and deal with whatever else comes up as it comes. i guess that's all i can do. i love her so.

she's a true miracle. i was told i couldn't conceive, let alone actually carry a child to term. i had already lost 2 before her, and once since (as recently as 3 years ago). i was sick for most of my pregnancy. really sick. and amazingly she was just fine. it got to the point where my body couldn't go on any longer, and ladybug was delivered at 32 weeks. a tiny tiny thing who needed no medical support at all. my OB/GYN still marvels at that. and my was she tiny. too tiny for me to touch - even the preemie clothing was too big for her! i was afraid of her. to look at her now, 10 years later, you'd never know she was a preemie. nothing but God. 

 I Have A Confession To Make:
i love ladybug. lauren camille. i love her. no, I LOVE HER. still no. that's not enough. those words just aren't enough. ok, i just looked up some synonyms for love: adoration, tenderness, affection, devotion, on and on.... nope, still not enough. not enough to truly capture and express what i feel about her. for her.

she makes me feel so many other things as well, that to me  all seem to be related to the love and pure adoration i have for her : frustration, passion, fear, frustration, anger, giddiness, fascination, and amazement. and the need to protect her and guard her with my life.

i find that all i want to do is touch her, hold her, kiss her. be near her. smell her, well.... not smell her all the time, she's now 10 after all, lol!. but you get what i'm saying, right? i love her nose, the way she pouches out her lips. i love just watching her. how she 'zones out' when she's totally into a movie. how her eyes truly light up when she's excited. the sounds she makes, hearing her make up a song about birds. watching her play by herself. i love her curly hair (most of the time), and i love it when she asks me questions and is really listening to my answer as if life itself depended on it. i love how she touches me. oh, to watch her sleep. especially that. how many of you check on your kids in the middle of the night while they're sleep? i do. i wake up and creep into her room, and listen for her breathing, a light snore if she's had a full day. if i can't hear her, then i creep closer, carefully though, not to wake her up. and touch her, to make sure, you know? yeah, you do. 

and the absolute best thing ever?? when she calls me 'mommy'. there's a particular way she says it that just makes my heart soar. and then there's the way she says it when she's up to no doggone good, lol. and yes, that one brings me joy too. 

it's not often that she's up to no good. really. juan and i are constantly wondering if and when the 'other shoe is gonna drop'. she was an easy baby. and easy toddler. and an easy kid. really. she's openly compassionate, caring, thoughtful, and empathetic. if anything, these things get her into trouble at times, because she's so busy thinking of everyone else that she forgets to handle her own business! she's not a whiner, comes home and gets right to her homework without much ado, doesn't complain about taking a bath, and is always looking for ways to help around the house. again - she'd rather help me unload the dishwasher and sweep the kitchen than clean her own room! 

now don't get me wrong, i'm not one of those parents who puts their kid on a pedestal, and feels they can do no wrong. ladybug is no angel and can be a real 'pill' if you know what i mean. she's notorious for telling it like it is, and will throw you under the bus in a new york second all in the name of truth. but a truly sweet and gentle soul she is. 

i just pray that she doesn't wake up one day and all has changed!

my favorite part of the day is the beginning. in the morning, she gets up and gets in our bed after juan has gone to work, and we laugh, cuddle, giggle, chat, and play before it's time to get ready for school. what a wonderful way for me to start my day! she, for me, is pure joy. it's a love that is total, complete, and all consuming love for my daughter. my joy. my ladybug. mmmmm.

~ mommy

Monday, October 3, 2011

14 Years Ago Today...

greetings everyone!

surrounded by some of my most cherished friends and family on a beautiful jamaican beach at sunset 14 years ago today i said "I DO".

i said "I DO" to a man who is truly my partner, my friend, my critic, my lover, my loudest cheerleader and biggest fan. my caretaker. he see's the very best in me all of the time. even when i'm truly not at my best.

like most men, he's not perfect. his communication skills need work. he's stubborn. he often only hears what he wants to hear. he's a bit more then just a little narcissistic and passive aggressive. yes, he's far from perfect. but unlike most men, he loves me in the most perfectly imperfect way, and that's just perfect to me!

if you don't know by now, i can be a handful and a little bit more than a notion. i know my own mind and i can be as stubborn as a charging bull. i'm sure that at least twice each month for the last 18 of the total 21 years  we've been joined at the hip, my dear husband wonders what the heck he's gotten himself into by marrying me.

we've been through alot together. when the minister says "for better or for worse", no one truly thinks of the 'worse' really. in our simple, newly married minds the 'worse' is a vague and distant thing, almost intangible in a way. 'worse' happens to other people. well, it has happened/is happening to us. as many of you know i've been stricken with several nasty autoimmune diseases, one in particular has the distinction of being terminal (the nerve!!), and he and i have been through some things that would rip many couples apart.we are only better and stronger.

i am so very thankful for juan. for his poise. his quiet strength and knowing. his discipline. for his wit and ability to laugh at himself. his tenderness and care. i'm thankful for how he takes care of ladybug and i. for his trust. his gentleness. his willingness to do whatever it takes to make me happy. his honesty. but most of all, i am so very thankful for his love.

be well friends :)

Monday, September 19, 2011

i know, i know... LOL!!

hey hey hey! it's me and i'm doing well :)

 i've just been busy beyond belief. you'd think i would have spent this time 'recovering from my transplant ordeal last year, but NOOOO.... c'mon, it's ME.  i just can't help it.

so what have i been up to?

- working on my foundation The Butterfly Project for Lupus (http://thebutterflyprojectfoundation.blogspot.com, and u can follow us on FaceBook too)

- gardening, sorry no pics from the beginning, our camera is on it's last legs and i'm lazy about downloading pics from my phone. but so far i've grown 2 types of carrots, 5 different types of tomatoes (roma, sweet 100's, cherry, yellow pear, and 'SF Fog'), tons and tons of slender sweet haricot vert (those skinny fancy green beans - LOVE them!), tons of different types of lettuces, 3 types of zucchini, several colorful sweet peppers - both regular and mini sizes.sage, rosemary, thyme, tarragon, and chives. oh and the flowers! tons of dahlia's, irish belles, fixgloves, jasmine, giant zinnias (they're over 5 feet tall!!), hummingbird penstamons, princess lillies. i'm so proud of myself because i started them all from seed!!! YES!  so now i'm getting my winter crops - cabbage, broccoli, more lettuce,spinach, carrots, and my peppers should be still going strong thru november. i'm a happy girl :)

- then there's 'work'... i've got alot on my plate. many of you already know that i run, with my dad, a boutique financial and small business consulting services firm where i also run my life coaching practice from as well  (coachangela.com and my new coaching blog which is under construction!). i had to put my coaching workshops on hiatus, and turn down or refer out several new clients for a little bit while i recovered from my procedures last yer, but i'm back to being busy now. it's a blessing to be self employed, be able ot work with my dad in a business that's thriving (even in this economy!), and that i love what i do and what i do truly touches people in ways that always amaze me!

- and then of course there's my family! the first love of my life - dearest juan my hubby, is still hanging in there. i swear, he must love me because he keeps coming home everyday, lol! i give him such a hard time, but i think he secretly loves it because he loves to fuss. and goodness knows i give him ample opportunity, lol! then there's my most beloved ladybug. she had a banner track season, again, and made it to the Junior Olympics in New Orleans earlier this year, but we didn't go. we chose to go home to atlanta (juan's home and my adopted one since college) for a much needed visit, and we had a blast. it's also where i got addicted to "piece of cake" cupcakes. oh they're truly dangerous. the best way to describe them is this review from Yelp "You literally have no idea. You just don't. This level of foodgasm-inducing dessert is so beyond your realm of understanding, it should have its own planet...Seriously." that's what i would have said, lol!

anyway, now that you're sort of caught up on everything. please know that i'll be much better about posting, because i really love to do it. i've just got to find the time and energy now, especially since i've started two other blogs and FaceBook accounts to maintain. but know that i'm back, and with pictures, lol!

be well friends :)

Wednesday, May 4, 2011

please know, that some one you know....

whew! and yes, again, it's been a while! but i have been busy and in a good way. my health you ask? well, as with everything - there have been ups and downs, but overall - I"M STILL HERE!


LUPUS is an awful disease that has no cure and, in its worst form, is just as devastating as cancer. i know because i have both, along with a few other critical and life threatening auto-immune diseases. and this may sound crazy, especially because we think of cancer as this alpha/omega of diseases - that there's nothing worse. but i find that my LUPUS (and the LUPUS of many others i know in this fight), is worse than my cancer. although there's no definitive proof of this, we feel that the LUPUS opened the door to my other diseases.

my LUPUS causes so many problems for me, way more than the other diseases. it affects my heart, my lungs, my muscles, my brain. i have other issues with these same organs (cancer, pulmonary fibrosis, vasculitis, MS, mixed connective tissue disease), but the LUPUS is all encompassing, ever reaching. it keeps me from driving, working 'officially', making and keeping engagements - both personal and professional, from crafting and cooking, from doing things with my ladybug, my friends, my family, and myself. it keeps me from finding my words and understanding those spoken to me, from keeping up with and enjoying my favorite tv shows and books. it keeps me from rocking my favorite pair of 3 inch heels and hanging out in the sun for as long as i want. i never know how i'm going to feel, or be every day that i wake up, and from hour to hour. i'm in constant, constant pain... pain that you can never get use to. on a scale of 1-10, with 10 being the worst ever, 6 is a good and regular day for me. and the seizures..... they rob me of so much too.

it's unpredictable nature keeps me from counting on myself in a way that's just so basic to most people, and i can feel it slowly yet aggressively trying to take away from me my confidence and my audacity to truly LIVE in spite of it. and i hate it. i hate what it's done to me, my body, to those who love me, what it continually tries to do to my life.

this is a horrible and insidious disease that has no cure and can kill. it strikes (mostly) women from all backgrounds, races, and walks of life in the prime of their lives - as they're just finishing school, staring a business, a family, a new relationship, an exciting career or adventure! this disease turns lives upside down and havoc descends, yet there's little to nothing in the form of support, resources, and major awareness out there for those suffering from and living with LUPUS. especially in the medical community - so many go mis or undiagnosed.

because of this, and my own frustration with the lack of services and programs, i have started a charitable non profit specifically for women at risk, the newly diagnosed, and warriors living with LUPUS here in my area = THE BUTTERFLY PROJECT for LUPUS. my goal is for this to become a national organization. we are currently registered as an exempt non profit corporation here in california, and are awaiting our federal exemption status at a 501(c)3. we're working on our website now and it will be up soon (www.thebutterflyprojectfoundation.org), as well as the rest of the details, and i will keep you posted so stay tuned!

this is LUPUS AWARENESS MONTH, and someone you know has lupus. please donate and find out more about how you can help those of us with LUPUS by going to www.lupus.org

be well :)

Tuesday, February 22, 2011

hey y'all!

hope your weekend was a great one. it was rainy and cold, the kind of days to do nothing because it's just too messy, light a fire, curl up with hot chocolate and read a book days. so i loafed around, procrastinating and skipping out on things i should have been doing - like chores, helping juan fold clothes, and washing ladybugs hair. i love her hair, but HATE washing it. it's beyond curly - as soon as i brush it out, it curls right back up as if it never know a brush or comb.

anyway, sunday i had to made a quick run to trader joes for a bag of lentils to go with dinner, and as usual, the parking lot was like a motorcross obstacle course. people totally not paying attention, doing their best to beat out the other for a good parking spot. fake smiles of acknowledgment as people rush to get to where ever they were going. i noticed a bit of a traffic jam as i headed to my T5, and just as i fell in into it and began to get settle for my drive back home, a young man walked up to the passenger side and tapped on the window - he really startled me. his car had stalled, the reason for the traffic jam, and asked if i could give him a jump, he had his own cables. a weird feeling came over me, and i looked him straight in the eye as i said "i'm so sorry you're stuck, unfortunately i can't help, i've got to get back...". he thanked me and flagged down an oncoming truck. i paused before backing out to see if he would help him.... nope. then as i made my way around to the exit/entrance, which was where the guy was stuck, i cased to see if anyone was helping... no luck.

the light changed and as i pulled off, an overwhelming feeling of guilt and abandonment came over me. i felt so bad, and it continued through the day, so i tried to figure out what that was about. why didn't i help someone in need. for no good reason really? that's not me. it drives juan crazy that i go out of my way to help people, if i can.

was it because it was cold and raining? that's not stopped me before. was it his appearance? that he looked a bit hoodlum-ish, as well as his car? again, that's not stopped me before. i didn't know, and it bothered me. so i thought on it for a while, and came to the conclusion that it had to me my instinct telling me to 'get'. for whatever reason, it wanted me, needed me, to get home.

did something bad happen later? like one of those crazy stories of coincidence? not that i know of. hey, who knows why i didn't stop to help. but i do know that i listened to my instinct, and 'got'! listening to it is something that can be so hard to do. learning when to and when not to heed it can be such a challenge,  especially us women.

we don't know what this universe holds for us and figuring out how to release it's blessings is an ongoing journey, but one of the keys, i feel, is our instinct, and learning to trust it.

just like faith.

Wednesday, February 16, 2011

i'm back.....yes, again, lol!

well hey there!

how's things? i meant to post on valentine's day, to let you all know that i was sending love. i hope you all had a day full of love...i did!

so, yes, i'm back and SO MUCH has happened to where i would say to myself "ooh, i'm gonna blog this!", but yet there's still the same 'ole, same 'ole. everyone is well - juan and ladybug. she joined the 4th grade volleyball team at school, and began tennis and is turning out to be a natural athlete - like her mommy! yes, she's still running track and the season (along with the scheduling madness) has started. she did decide to drop girl scouts, of which i was disappointed, but totally understand why. with her schedule, she just didn't have the time, plus, she loves the other activities more than GS. and as for juan..? well, he's still chasing me around, trying to make me 'behave'. so no, not much has changed in that area!

as you see from my previous post, i was hospitalized for most of the fall, from early september to mid december, initially for my lung disease flaring up (pulmonary fibrosis), then that lead to a lung infection which kept me in isolation for two whole weeks - i could not leave my room and visitors were restricted to just immediate family for 14 days! yes, i was able to see my beloved ladybug practically daily, even though she was on the 'restricted list' because children are cootie factories, but thank God for the nurses - they just looked the other way!
for ladybug, this is one of her favorite places! mainly because the nurses spoil her rotten!

this was my 'home away from home'.

speaks for itself.

this is the monstrosity that cycles the blood/bone marrow and plasma in and out of my body. it's like dialysis in a way

i tried to capture the plasma and marrow going in/coming out. it's all heated too!

this is some of the plasma and blood product meds they treated me with over the 3 weeks

it wasn't all smiles

this contraption protruding from my neck is called a 'pigtail', and it's how all the blood/marrow and plasma gets in and out

the nurses love ladybug so much, and we spend so much time there, that they give her gifts!

juan's bed - yes, he stayed with me most nights. he and ladybug spent weekends

but i'm doing so much better now. the battle is still raging on though, just not at the previous levels. i was in the middle of a course of chemo last month when i suddenly and dramatically began to loose my hearing, to the point that i'm wearing a hearing aid. the docs aren't sure what's going on and are totally dumbfounded - i'm feeling sorry for my ENT specialist because you can see the frustration and desire to fix this for me (he's in love with ladybug) in his eyes and face. well, at least i can hear something - better than nothing. the benefits are that i can hear ladybug or juan being a little smart asses when they think i can't hear them - busted, lol!

overall, i'm on the mend and looking for some trouble to get myself into, lol!
  so please stay tuned, because ....I'M BACK!