It's not you, it's Little...

Our visiting nurse is trying to break up with me. That is, she thinks that Little is so healthy and is doing so well that we don't need her to come anymore. I'm not sure how I feel about it all. On one hand...it is so, wonderful...so truly, truly exciting that Little seems to be doing so much better since her last surgery. This really is the kind of news that the parent of a child with health concerns dreams about getting, so I really am happy...but...on the other hand...I'm scared! I'm not sure I'm ready to go out on our own just yet, with months between cardiology visits and no one checking up on Little in between! Eek! I think I feel a panic attack coming on!!

Mostly it's Little's continued struggle with eating that worries me. I sometimes find myself living for that every two week home visit from our nurse, so that I can be reassured that I am, indeed, NOT starving my child and that she IS still gaining weight, though sometimes I wonder how. Ack! Maybe this is somewhat comparable to being addicted to crack (go with me here, people)...in that once I'm able to wean myself off of the home visits I'll be able to feel secure in going it alone for months at a time? But I'm thinking that the whole weaning part is the key! I mean, no one expects a crackhead to just stop cold turkey...well not without medical and psychological support anyway! If so Betty Ford would be long since out of business!! Even smokers have the patch to get them through the rough spots! ::wheeze:: But in the end, it just isn't my decision to make...so I guess we'll just wait and see what our cardiologist thinks. I suppose getting branded as too healthy to have at home medical care can't be all bad, right? I just pray that they're right.

A Walk in the Sun

Remember that fund raiser I was telling you about a few weeks ago? The walk for Children's Hospital? Well, it has officially come and gone, and my life is a little quieter now. Ahh. It was this past Saturday, the 20th, and, really, it turned out great! The weather was a bit warmer than expected...like, you know, 20 degrees hotter than the meteorologist said it would be the night before, but who's counting? **coughcough*me*coughcough** It's funny that I never really noticed how huge a difference there is between 62 and 82 degrees...until Saturday...when I had all of us dressed in long sleeves and long pants... and we arrived at the walk location and were already sweating from just getting the stroller out of the car...before even getting the kids out of the car...and long before the walk even started. It. was. awesome, the way that stepping on a piece of glass as your walking along the beach is awesome. Yep, loved it.

Know what else was awesome? Organizers of the walk had shuttles set up to get everyone from the finish line (where you would, of course, park your car) to the start line of the race, for our general convenience. Totally awesome...that is if there had been enough of them to get everyone there before the start of the race...so everyone didn't have to stand out in the blazing sun, holding our hot, whiny children for an hour...getting hotter and stinkier by the moment...in order to eventually pack (and I do mean pack) ourselves into school buses for the 3 mile ride. Friggin. Awesome. Favorite moment? Standing in line for the 50th bus that pulled up in front of the crowd while everyone tried to push their way to the front of the line to get on (did I mention that this was a charity walk? To benefit a children's organization? I did. Ok. Just checking.) when a volunteer who had obviously never been given the power position of holding the megaphone before, loudly bellowed at all of us "Not everyone is going to get on this bus." Really? Cuz I thought we'd all just pile in and do lapsies! No? Someone take the megaphone awayyy from the woman, before she hurts herself...or someone (who is really hot and crowded, and holding a wiggly baby in the sweltering sun) does it for her. Ugg.

Anyway, bitching aside, it really was awesome to see thousands of people storm the streets of downtown Milwaukee in order to raise some well deserved cha-ching for an amazing organization. Little wore her red "Champion" shirt, setting her apart from the masses as a child who has received care at Children's, and napped most of the way. Big ate popcorn, drank lemonade and enjoyed pointing out the various canines in attendance for the day. Local cheer leading teams and bands alternated lining the streets in order to keep walkers motivated and entertained as we made our way along the path to the finish line. Surrounded by thousands of other families, friends and champions alike, it was truly a sight to behold. Worth every. drop. of sweat. Truly.

We ended up with 17 people walking with our team, and almost $700 in additional donations from our friends and family who couldn't make it to town for the event. With great pride, I must say that we really have the most wonderful and supportive friends and family!! A big thank you to everyone who gave their time and money to make this event possible. I can't think of a more worthy cause.

Questions Unanswered

We make friends in the strangest places. For instance, the friends that we recently made in the shared hotel, I mean hospital room that we inhabited during Little's last hospital stay. (It's the little bottles of shampoo and free packs of diapers that they pass out, it gets me every time...just like a Hilton I tell you! A little pricier though.) A shared room?!?! you say? Yes, that's right. Our children's hospital still has shared rooms for patients who don't require ICU level services. I won't beat around the bush, in most cases it sucks. Hearing that you're being upgraded from the ICU should be a great thing. Instead, upon being notified of your "upgrade" a feeling of dread washes over you as you begin to wonder such things as I wonder if our roommate will be loud (leading to the inevitable) I wonder if my baby will be able to sleep if our roommate is loud? Or I wonder if our roommate is contagious (its happened to us twice people...I am not just being paranoid), and I wonder if the parents of our roommate plan to have a veritable fiesta of some sort on their side of the room while we're trying to get some rest. You know, happy thoughts. Anyway, the last time we shared a room, we were pleasantly surprised to meet our roommates, the Grills, who not only made our 4 day stay that much more pleasant by being considerate, caring, responsible human beings (this is a bit much to ask for sometimes I've discovered) but also introduced us to caringbridge.org. They had set up a support site in order to keep their friends and family informed about their daughter's condition and had gotten much joy out of the experience. The day that we were both discharged from the hospital, Mrs. Grill gave me the web address to her daughter's site, and asked me to set one up for Little, so that we could both follow the other child's health and progress in the months to come. Eventually, I did. (here comes a big leap people...get ready for a big subject change...aaaaand...leap! Excellent.)

A few weeks ago, I logged on to the Grills' caring bridge page to read their latest journal entry and see how their precious little girl was doing. Instead of news on their daughter, I discovered an entry that pleaded with followers of their page to go to another child's page, in order to offer encouragement and strength to the parents of a little boy (who they had met during another one of their hospital stays) who "wasn't doing so well". So along I went, to this other child's site, in order to do what I could for these people who were, I assumed, facing some tough times with their child as he was recovering from an illness or medical condition...something that I felt I was fairly familiar with. Instead, I was found myself completely unprepared for what I found. It seems that just days earlier, the parents of a beautiful baby boy, whose handsome face adorned the welcome page of his care site, had been told that their little guy was most likely not going to make it. My heart about stopped upon reading just the first journal entry. Because I felt like I needed more information on what affliction he was facing and how this could possibly be, I decided that I needed to do a little more digging into past journal entries. I then quickly wished that I hadn't. Reading the loving, heartbroken, fearful words of this mother was nearly more than I could handle. I offered my love and encouragement to them, and then promptly called in to work and took a vacation day so that I could spend the rest of the day hugging and loving my daughters. I found myself a bit sheepish, unable to explain just why the struggle of complete strangers would turn my world upside down so easily, until that evening when I was discussing things with Hubby. "I can't explain it," I told him, "I feel strange about how much this is bothering me. I don't even know these people and I hurt so much for them." His reply? "Or maybe we know them all too well." Indeed. Because this is the exact situation that we work valiantly against everyday, watching Little like a hawk, calling her doctors and nurses at every slight sign of negative heart function, to make sure that this is somewhere that we never find ourselves, on the writing end of journal entries such as these. It all began to make sense.

No matter how hard I tried, or how much I was encouraged not to do so, I found myself unable to not check up on this family over the next few weeks. Hoping for a miraculous recovery, I would log on to their site, first being met with the handsome picture of the sleeping baby boy, so sweet and innocent...and then, inevitably, a disturbing, heart breaking journal update. Slowly, day by day, the little guy was passing away. I remember reading one particular journal entry in which the boy's mother wrote the doctors had told them that they believed that he would be passing soon, and that she and the boys father were as ready as ever for him to go, and hoped that it would be soon. I sobbed. I couldn't help but wonder what kind of emotional torture one must be subjected to in order to be ready for your child to pass away. Was it possible to know this kind of pain without going absolutely mad? I then quickly prayed that I would never find out the answer to that question.

Within a day of the previous entry, came another journal entry...one that I had been praying that I would never see...saying that the little guy had, indeed, passed away. Again, I felt a bit sheepish about how deeply affected I was by this news, but found myself completely unable to check my heart at the door, and I wept for them. I wept for the handsome baby whose face I had only seen in pictures. I wept for the parents who had gotten the kind of news that I don't even allow myself to contemplate as a mother. I wept for the grandparents and aunts and uncles who had seen this precious gift enter the world with so much hope, only to have to let him go so soon. I wept for all of them and, to be honest, more than two weeks later I am still unable to shake the heartache that began the day that I first wandered over to their web page. I wonder if I will ever stop thinking about them, and seeing that little guy's picture in my mind. I wonder if I will ever forget.

How does one go through something like that and survive? How does a parent get up everyday and face the sunrise after losing a child? Is it possible to ever be truly happy, to experience joy again after living through something like that? I don't even know them, and even I feel as if my world has been rocked by what they've been through. I wish I had some insight to offer on this, but must also admit that I am ever so thankful that I have absolutely none, and that I desperately hope that I never do. More than anything on this planet, and beyond...I hope that I never have the answers to these questions.

Happy 8 Months!

Happy 8 months Little girl!! You are simply amazing, beautiful girl!! You blow me away every day with your strength and joy! You are an inspiration to me and everyone who has the fortune to meet you. What a blessing you are.

Love,
Mommy

*****BREAKING NEWS*****

I just got a call on my cell phone from Big...she's at Grandma's house while I'm working. The conversation went like this:

Big: Mama!! I go'd pee pee on da potty!!!!!

Me: WOW, Big!!! Good job!! You're so big!!

Big: *silence*

Me: You're getting to be such a big girl! I'm proud of you!!

Big: Mama! I go'd two pee pees and one poo poo!

Me: *giggling* Wow!

Then she promptly lost interest in talking to me and hung up on me. *shrug* So, yes...it's official. All of the grousing I've done over the last...umm, what's it been? A year now? Yes, the last year, seems to finally be tapering off. We are officially potty training, ladies and gentlemen...and with some significant success. Praise the LORD! This girl is a tough nut to crack!! Talk about stubborn! We tried stickers. We tried candy. We tried potty training books.* We tried praise, and singing, and special treats...in fact, you name it, we tried it. It's been a year people.** I was starting to wonder if she might be wearing diapers under her wedding gown someday!! Wanna know what bribe finally hit the jackpot? Princess underpants. I put them on her under a pull-up, so she gets to wear her fancy underpants (that I let her pick out) but we also don't have the huge wet carpet, pee pee on the leather couch mess that you get from going without the pull-up too soon...not that I'm speaking from experience or anything *ahem*. Genius, I tell you...pure genius.

*She did show some interest in the book "Time to PEE!" by Mo Willems. It has lots of funny little mice in it and mouse stickers at the end of the book for use on a potty chart or the like. I won't totally discount this book from playing just the teeniest part in her motivation.

**Please note that I did not pressure my daughter to potty train everyday, all day for an entire year. Even I, a first time potty trainer (Is that at all like a personal trainer? Wait, then where did these thighs come from? *sigh* Nevermind.) know that all that pressure does no good. We started at age 2...then, after no success in a week tried again at 2-1/2 for another week and took a break, and have periodically been trying since then when periods of interest seemed to spark within her. I have very little explanation as to why this time is the time...but I'm taking it, and I'm running, baby...faster than I've ever run before.

Check Her OUT!

This past Monday afternoon, our OT stopped by for our weekly session...or is it bi-weekly, or every three weeks? She needs exercise, people!! Oh, right, *ahem*...it was Little's first OT exercise session since she had her surgery on July 29th...that's right...I said July...I mean, could our OT have a personal emergency some other time...when my little girl hasn't gone 7 weeks without OT? URG! Aaaaaanyway, we were sitting there on my living room floor, discussing what kind of activity and development Little has been showing in ohhhhhh, the last month and a half (*deep breaths*) when I just decided to sit Little down on her play mat to show the OT that she (Little, not the OT) was doing pretty well sitting with my assistance, but not yet ready to sit on her own. Clearly, we had more work to do. So, I sat her in an upright position, legs in the "V" position out in front of her, and moved my hands off of her sides and about an inch away from her body so that I could catch her when she started doing her best "timberrrrrrrrrrrrrrrr" impression (as she is apt to do) and I waited...and waited...and waited some more (probably 60 seconds, but it felt like 60 minutes)...until finally Little started to teeter to the side a bit and I put my hands out to catch her...but then, she did something that she's never done before. She put her chubby little arms out to the side and she balanced herself...and sat back up on her OWN!! The next thing I remember, the OT was slapping my cheeks, waving smelling salts under my nose, telling me to wake up and get my lazy butt of off the floor. OK, not really...but, I don't think I could have possibly been more shocked. My little baby...with two heart surgeries under her belt...and a pacemaker...who is still having trouble rolling over because it hurts to be on her tummy...who hasn't had OT since JULY (oh, did I say that already? *grumble*)...who has nary sat up on her own evah evah evah...was sitting up all. on. her. own. I sat and stared. I glanced at the OT, who looked back at me with approval. I looked back at Little, who turned and looked at me all "la dee dah, I've been doing this for ages, where have you been Mom?," like it was just another day in uprightness for her...and then she smiled, a big proud smile...and my heart melted. *swoon* And she hasn't looked back yet. Suddenly, she's a "sitter".

Every day, I am so filled with pride, and glee, and wonder that my daughter, who has faced more challenges in her short 8 months on this Earth than I can even fathom in my 30 years, continues to be so incredibly strong and show us what she's made of. She is the most wonderful blessing a mother could ever hope to receive. Amazing, I tell you. Every day with her is a lesson in strength and perseverance. How lucky we are.

Aww, pshaw...

Becca at Life with Boys has given me a blogging award...and I feel all sorts of unworthy. Isn't it pretty?!? *swoon* Thanks Becca!!

The award comes with these rules:

The winner can put the logo on their blog. Link to the person you received your award from. Nominate at least 7 other blogs. Put links of those blogs on yours. Leave a message on the blogs you've nominated. Write an acceptance speech in the style of the Academy Awards, thanking everybody’s mother, father, sister, brother, aunties and uncles and the kitchen staff at your favorite restaurant!

Whew! OK, so here goes...

I have to go ahead and give this award right back to Becca @ Life with Boys. Her blog is always funny, honest and well written!! Plus her boys are so dang cute!

Next I give it to Sue @ My Party of 6. Her blog is fun, smart, and often includes current event topics that I don't dare to blog about. It's awesome. Plus, again...cute kids! Can't lose.

My third recipient is Fuzz @ fuzzmartin.com. A local friend of mine, he's got the blogging thing down. I like his mixture of personal stories, politics, local news stuff, music, etc. Plus I like his sense of humor. Sweeeeeeeet.

Fourth, I nominate Andrea @ Southernville. I HEART Andrea and her wisecrackin', say it like it is attitude. She's also a wonderful Mom and an awesome lady. And she also has the cute kids factor going on. Rock on Andrea.

Fifth, I have to nominate Tootsie Farklepants @ Vintage Thirty. I literally laugh out loud every time I read her blog. I seriously look forward to each new post. The picture in her blog header alone is worth the trip over to her blog. Hysterical!! She's sarcastic, the posts are well written, and she's so damn honest about her life. And...cute kids. Love it!

Sixth, I nominate Ann @ Journey from There to Here. Having dealt with anxiety issues myself, I know how tough the battle is to reclaim your freedom and your life. The fact that she blogs so honestly about it leaves me in awe. Plus she's a damn funny chick (who has cute kids). Way to go Ann!

And lastly, I nominate Chris @ Notes from the Trenches. Her blog is smart, funny, and all around entertaining and informative. Excellent. P.S. more cute kids.

I'm not very good at getting on here to blog lately and I really need to make an effort to do so more often. This is my resolve...I shall return here tomorrow with a new post. Lord knows I have enough things to write about...crazy...*mumblemumble*...exhausted...*mumblemumble*...motherhood. Hee! Thanks again Becca!

P.S. Through receiving this award, I finally learned how to link to things in my posts. Sweet.

I should join the circus!

Really, I should. No, not because I can grow a beard like nobody's business (heh, OK - I'm actually still facial hair free...whew!) and not because I think I'd be a great lion tamer (based on my ability to diffuse 2 and 3 year-old tantrums) no, not for those reasons...but actually because I have recently become a self-taught master juggler. OK, maybe not the kind of juggling you're thinking of, with flaming batons and bowling pins flying through the air while the crowd watches, mouths gaping...just waiting for that one.small.wrong.move. No, no. The kind of juggling I'm talking about is that of the "I have so many things to do/think about right now...its a miracle that my brain isn't blowing right out of my ears as I type this" variety. Sometimes, I have to remind myself to breathe.

Our schedule has gotten ca-razy busy lately. We have PT, OT, Speech Therapy (and all of the daily exercises that we need to do in order to continue working on all of the above listed therapies), a visiting nurse, my 3 day a week job, Hubby's full time job, doctor appointments, birthday parties, potty training (oyyyy!), *pant*, and my newest obsession, I mean scheduled event...a Children's hospital fundraiser.

Really, it's just a walk...a one day event. All I need to do is sign up, show up, and walk...no big deal. But could I really leave well enough alone and keep it simple like that? Would I be writing this post if I could? I think not. No, instead I decided to form a team for the walk,in honor of our Little's strength and bravery in being a patient at said hospital. But in forming a team, I then added to my plate the need to contact everyone I've ever known in my whole 30 years of life to try to get them to sign up and walk with us...oh, and Hubby's whole 33 years worth of friends, family, and acquaintances also. Yep, I sent an email yesterday to pretty much the entire free world. (It was actually quite impressive in that "I wonder how far around the planet this email will travel" kind of way.) So, why, you ask, would I purposely add something else to my already overloaded schedule when I already feel justified in whining about how maxed out we are? Well, either A. because I'm a nut, or B. because this fundraiser just that important to me. I'd like to think that the sole answer is B. but I'll go ahead and admit that it's actually probably a little bit of both A. and B.

In all seriousness, where would we be right now if all of this specialized care wasn't available to our children at a place like Children's hospital, or even if it was around, but wasn't as spectacular as it is today? Would Little be as incredible as she is today, pretty much doing anything and everything a perfectly healthy baby her age can do? Would we have received the awe-inspiring type of care for her that we have at our hospital at some other facility, or even at this facility if the funds weren't available to make it such an amazing place? Would our doctor have the resources to be in contact with doctors around the world in an attempt to continuously advocate for the best outcome for our precious girl? Would there otherwise be any chance that our little girl might possibly live a normal life some day? And really, most importantly, would we even still have Little in our lives right now if we hadn't been so fortunate to receive care there? I think about these things all the time, how fortunate we are. And to be honest, if I had to shave off an eyebrow and post my picture on a billboard in Time Square to get my point across, I would. Children's hospital saved our daughter's life...not once, not twice, but likely three times in the last 8 months. How could I not get out my address book, send a few emails, set-up a few websites, make a few calls to advocate for them in return...juggling as I type? It just wouldn't be right.

So, if you've recently received and email from me about the walk, or if I've called you or talked your ear off about joining our team, or donating anything you can to Little's team...and you now feel "bugged" I realllllly do apologize. I just can't not do everything in my power to make this event as successful as possible. I have them to thank for every kiss and every snuggle I'm able to enjoy with my precious Little everyday...something I'll never be able to repay them for.

If you're at all interested in walking with us or making a pledge to Little's team...please contact me at jenny_in_wi_07@yahoo.com and I'll steer you in the right direction. *wink* Thanks for putting up with me. I'll get off my soap box now.