Pity Party

I am having a pity party. I DO NOT want to have a pity party, but I am not in control of my feelings right now. On top of it, I am also having a "bipolar" moment. Not exactly a moment I guess, as it has been about two hours of this.
I have shared with some how at times I feel bipolar about Elizabeth. In a matter of minutes I can go from feeling unbelievably lucky for her health (the ways she IS healthy) to totally sad and angry that we have had nine years of this. And, If I am being candid and raw-real, I can tell you what else I have shared with few...I even have times of feeling I have a bipolar relationship with God. One minute I am praising Him (even praising all the ways Elizabeth's illness has blessed our family) and the next I feel angry with even Him.
So, here I sit, bipolar (no offense to anyone who is bipolar. This is just the only word I know to describe how I am feeling).
All this after a full day at the hospital where I met with families in horrible situations that made me feel such sadness for them and such gratefulness for the health of my family. I prayed on my way home a prayer of thanksgiving and I hugged the kids extra-tight when I saw them after my day. Yet still, knowing that and having felt that just hours ago, something set me off just enough to feel angry, guilty and sad for my daughter. Bipolar, I tell you.
Poor Walter is going to walk through the door any minute after his own long day at work and I need to decide right now if I am going to wipe away my tears and hide my feelings or if this is going to be a night where I invite him to my pity party and we cry together. Seriously bipolar. Not seriously.

Date Night

The kids wanted to have a date night for dinner. Jackson came to me and said he was going to take the girls on a date (here) and after dinner he would play freeze tag with them and dance. So...we did. I was their server and they were my guests.

Jackson, under strict direction from our family Diva (you know who that is), greeted the girls at the door, gave them each flowers, walked them to the table and pushed in their chairs for them, and called them "stunning" and told them they looked "gorgeous tonight." They made small talk, as you would on a dinner date, and at the end of the meal Jackson tugged at his little pocket and presented me with an ATM card and said "I'll get the bill" I could have peed (too candid? sorry!)I was laughing so hard!

After dinner they pushed their little table aside and danced. Jackson danced with Liz just long enough to melt my heart before spending the next hour on the ground perfecting his break dance routine- I kid you not!

To be honest, I was a lazy and detached momma today and the kids' plan for dinner made me shake off my funk and have fun. It was a perfect date night.






Waiting for his "dates."





Jax walked the girls to the table...






....and then pushed in their chairs.








Celery, carrots & diced turkey swimming in Ranch dressing, anyone? Gross!





This kid is awesome!




Happy girl





Sweet Katie





Oh, look at the way he is looking at her!





Doin' the Cowboy Dance






Cheers!

When are you going to marry Daddy?

A bazillion years ago. Alright, maybe it was more like 11 years, but it feels like a bazillion!




Tonight after dinner Jax saw me spooning dinner into a bowl and, assuming all was going to be eaten, said "We need to save some for Daddy!" Our exchange from there went like this:
me: Jax, this is for Daddy.
Jax: Oh, it's because he is at work and had a hard day?
me: Yes, and I am his wife so I do these things.
Jax: When are you going to marry Daddy two times?
me: Jax, we already got married before you were born.
Jax: Oh, can you do it again? I want to see it.

Ten minutes later, Walt got home and Jax met him at the door asking him to come into his room so he could talk to him privately (the girls are big on this phrase right now). Walter told me that Jax asked him if he could please marry Mommy again so he could see us "mooch" (kiss).

Gosh, I love this kid! I love to hear how his mind works and tonight it is working overtime. Before the wedding talk, he also asked me who Jesus' master is and said he knows he will go to heaven when he dies, and asked if someone can die if a bad guy shoots fire at their neck. What in the world?!

Jackson's "two weddings" talk made me think of a "second wedding" I attended. Two years ago a close friend and her husband renewed their vows for their ten year anniversary. It was one of the most special things I have ever witnessed. It was a small gathering of only 25 people, all who circled around the couple during the amazing ceremony and then sat at one long table for dinner and a night of exchanging stories about the couple, laughter and tears. Beautiful. And yes Jackson, they even "mooched"

SHM

After school on a rainy day. Hot popcorn, hot chocolate and cuddled on the couch.








I was a Y kid and then a latch key kid. My parents worked and I always assumed I would continue working after I had children. I would have my (one!) first child and the go back to wearing heels and pretty clothes, lunch dates with co-workers and bringing home a paycheck. And then....that plan flew out the window once I had the twins. Since then I have been "that" mom. I am a freaking PTA over achiever and even drive a minivan for crap's sake! I wouldn't change a thing though. I get to stay home with my sick child when she/he needs me, I attend field trips and I go to park play dates on weekdays. And, my favorite thing- I get to greet my kids after their day at school. Admittedly, I don't bake cookies to have waiting for them even close to as much as I dreamed I would and I don't greet them with arms open wide as much as I should, but I love the privilege of this.
The kids know no other way than for me to be home with them, so they don't understand fully that it is a treat; "You don't have to walk home in the pouring rain!" I have told them more times that I care to remember. One day they will realize how lucky we all are to have me at home. At least that's what I tell myself.

Good morning, Happiness!

This is what my night looked like.... breathing treatments and a barf bucket!





And this is what my day looks like.... good morning, Happiness!




I always marvel at how a child can be up sick most of the night and then in the morning
be bright-eyed and playful. It reminds me of how, before having kids and having the life
sucked out of me (right, mommy friends?!), I was able to go out all night and still make
it to work the next day.
Nine years into this mommy-thing, I have logged countless nights of missed sleep due to
caring for one of my sickies. And still, I can't help but smile back at them (through
half-opened eyes and a bit of hidden grumpiness) in the morning when they act as though
we've both had the most restful night of sleep. Good morning, Happiness!

Alyssa

This is Alyssa. I have met many people in my life and will meet thousands more.... and still, Alyssa will always be someone I call one of the bravest, most special people I have ever known. If ever someone were to question God, Alyssa, in my mind, is "proof." She has proven miracles more than once and she alone has moved hundreds, maybe thousands, to their knees in prayer. How huge is that?! Her family is equally amazing as they have weathered her journey with her. To call them inspiring seems more than inadequate.
Alyssa attends the girls' school and I have known of her for two years. It wasn't until this past year and through my work at the hospital that we became friends. Hmm, maybe more like months for friend status with Alyssa, because while she is fun and friendly and unbelievably loving, she is weary of people until she gets to recognizing your voice...would that be fair to say Juliette? Anyway, I think I have developed her trust and as her cuddles and giggles in my ear now suggest, I am pretty sure I can call her a little friend.
To recap Alyssa's story is long and complicated. I will sum it up as best I can, and please visit her site for more details and to make a donation: Alyssa was diagnosed with leukemia at age 3. A year into treatment she developed headaches and had a major seizure. It was discovered that she'd developed Herpes Encephalitis which attacked her brain and caused major brain damage. She was in a coma and when she woke had right-sided weakness, a seizure disorder and was left blind. For two years, her seizures progressed. On a good day she had one or two, and on a bad day she would have up to 30 an hour.
In an effort to save her life, Alyssa had brain surgery in November of 2010. Two thirds of her left hemisphere was removed. She is amazing, and with time and therapy and strength, Alyssa recovered and has been able to talk and walk...and show how SMART she is with her cognitive thinking! In February, she suffered a set back and had another brain surgery due to an infection.
Alyssa has fought and beaten cancer. She has recovered from massive brain damage and survived the removal of a large portion of her brain. She is totally blind.
And still, she loves life and loves God. There are just no words to describe her.
The family is working hard to raise funds to get Alyssa a service dog to assist Alyssa with daily things, detect future seizures and help her live life to the fullest. If you would like to donate any amount, go to Paws for Ability and search for Alyssa Howes. (www.4pawsforability.org/dream.html#Alyssa Howe)If you would like to make a direct donation to her, let me know.


My reason for blogging about Alyssa tonight is not only to raise awareness about the fundraising that is going on for the dog she needs, but also to hopefully fill you with something you didn't have when you sat down at your computer tonight. Seeing Alyssa always reminds me how grateful I should be; how grateful I am. Alyssa inspires me and reminds me of hope, faith and courage. I pray you felt the same as you read her story.

Juliette (mom) and Cindy (grandma), thank you for letting me share your Alyssa's story. You are both so amazing and I am in awe of you. You are strength and courage and faith and it is an honor to be able to watch you when Alyssa is at times of needing you most.

Sisters

It has been on my heart to write a blog post about my sister. There is just so much to say, I don't know how to condense it or put it into words. I thought I would be able to tonight, but I cannot. Still, I found these photos and will at least start with them.
Megan and I are 14 months apart. I do not remember life without her. She came along and stole my thunder, I am sure, and in the process made everyone she has ever met fall in love with her. She was spunky, fun and has always had a sparkle in her eye that is half mischievous half glamorous. As a child, I loved her and couldn't stand her, all at the same time. She "took" my friends, read my diary aloud in the middle of our street and kept her side of the room a disaster! We fought and cried and even taped a divider down the center of our room so that we could stay separated. And still, the first nights on my own in my apartment without her, I was so very homesick for her.
As an adult, she has become one of my best friends. She has helped me more than you would ever imagine... taking over for caring for my kids while I am in the hospital or appointments with Elizabeth. There was one point where she stayed for 18 days with first Elizabeth and then Kaitlin, as each was hospitalized back-to-back. The girls were only 7 weeks old and Meg cared for them as well as any mother could.
I could go on, but I won't. My sister is amazing and I am grateful for her.



"Borrowing" (and obviously acting out!) Meg's bottle. Was I cute or what?!








{Who cares that Baby Megan, who cannot swim, is running into the bay. Take a picture of ME!}




And then came a brother. The Prince. The favorite...which is a blog for another day. : )
Nevermind the woman who obviously just departed the Mayflower!

Elizabeth loves to put together plated food. She may not eat it, but she has fun making food look pretty on a plate. She dices, slices, sprinkles and garnishes her food with anything that resembles what she has seen done before. She actually does a great job! You do not want to eat most of what she makes, but it looks good. Today, she had Kaitlin and Jack compete in a "Quick Challenge" to find the Top Chef of the Noel home. Thankfully, I did not get the honor of judging it!




Chocoate with bananas, dusted with cinnamon and garnished with lettuce. Hungry, anyone?



Kaitlin cracks me up! I wish you all could have heard her post-cooking commentary at "Judges Table!" She was awesome.








Jackson did not eat any of his chocolate creation. He promises!

For the past few days I have been feeling especially lucky, blessed and grateful. It is the kind of gratefulness that makes me smile and sigh all at the same time. How lucky am I with all I have?! Someone I know said "but you really aren't lucky. Things are kind of bad for you right now." Ummm, no! I mean, things are tough and I would do anything to make Elizabeth well and assure she'd never have to face any of these things again. I would love to have all the money we spend on medical bills back. I would like some other things to be easier, but really, I am so blessed.
In comparison to this person's comment, someone else also mentioned to me recently that my life seems so great. It is! But, please know that it is not perfect. My writings reflect mostly good things, but I am not perfect...just ask my kids, particularly on a day when I am stressed, short tempered and not feeling very grateful!

I certainly have done my share of complaining, but oh my, it seems people complain about so much! I know two people who complain on a daily basis. Every day is a hard day and every difficult situation, for them, carries the weight of a total crisis. How taxing and sad that must be! These are healthy people who have friends, money and family. My goodness, if every day is hard when you have these things, then I think you need to reevaluate things.... find gratefulness!

Yesterday when I was at the hospital to Mentor, two of Elizabeth's doctors saw me and gasped, assuming she was inpatient. I was grateful to walk out of the hospital and pick up my girl at school and bring her home, healthy(ish). I was, as I always am, overwhelmed with gratitude for my healthy kids, as I sat bedside with grieving parents who have some very sick children. If you have a healthy child, let me remind you how blessed you are. Do not take that for granted. Ever.

Today I am especially grateful for a husband who works so hard for our family and who rises early and works late to provide for us. I was also grateful when he paused before walking out the door this morning, while the rest of the house was still sleeping, to cover me with an extra blanket and whisper for me to have a great day. Another day I will get into why that act means so much, but for today I will just say that that simple act is a metaphor for us. I feel lucky today to have traditions to share with my children that make them giggle, smile and think of our family. Today I feel blessed to have girlfriends, a warm home and corned beef and cabbage.
I could go on and on with my list of gratefulness, but will simply close by saying that I hope today you feel grateful too.

Oh..... I am also grateful for little boys who see a motorcycle at Costco and assume, as easy as buying papertowels or a mega pack of granola, one can simply purchase the bike and ride off. : )

Gross!

Today has been gross. Not gross like flu-gross (that's a whole other level), but pretty gross. I started my day collecting and digging through Elizabeth's, um, stool and ended it checking the kids for lice. Somewhere in the middle was finding the girls' mini-compost box, complete with earthworms, in their bathroom! They did the compost project at school and brought it home. Instead of putting the box outside like normal people, they named the worms and vowed to keep them as pets...IN my house. No, no no.

Casually, around 8:00pm, the girls mentioned they had been called to the office with only one other classmate to be checked for lice today at school. So odd, so I dug a little and found out that a child from their school, who was at the party they were at on Saturday, has lice. So, the nurse was called to check them. Ahhh! They do NOT have it at all, but I freaked out and rushed to the store to buy Lice-ridding shampoo. Target had not one bottle left on their shelves, and so I had to hit up another store. I then stuck all three in the shower and gave them treatments before stripping down all the beds in the house. Gross! It was while in the girls' room gathering bedding that I found the worms in the bathroom...you can imagine what may have been discussed then. Gross, gross, gross! This was all done late on a school night, when my gross little ones should have been in bed.

I am itchy, convinced I have lice, exhausted and grossed out. Walter just walked in from work, clean and calm from a workday I can assure you did not include poop, worms or lice scares, and asked how my day was. Um, it was GROSS!


Now do they look like identical twins?








"Edward the worm"

Get your own poop!

Elizabeth is going to drive me crazy. Honestly. She is going to get over all of this health stuff and I am going to be left a crazy person because she has broken me down. For days I have been begging her to let me collect her stool. She has refused. First, she told me the doctors and I could collect our own if we wanted poop to take to the lab. Then, she would go to the bathroom and come out, after she'd flushed, and let me know she'd gone and "oh well" I missed it. Grrr! This sounds incredibly disrespectful of her, but there comes a point when I have to let her feel control over this situation and even let her voice her feelings and frustrations, no matter how sassy they may sound. I needed the samples to take to the lab to turn in when she was there to get labs drawn and she knew that, so she was holding off the trip by not letting me have what she knew we needed. Pretty darn smart!
Finally, she cooperated this morning. Out of nowhere and without prompting or begging, she called me into the bathroom. What the heck?! After the days of tears and anger and resistance, she just simply called me to her. Oh, Elizabeth Claire!
She'd fasted last night and this am and we were able to get to the lab. She was in a panic because she hates missing even 30 minutes of school, and the trip was taking extra-long because we had the lab techs in a scramble, trying to figure out how her blood needed to be drawn and processed. I guess her orders were pretty uncommon and it took time for them to figure things out. I was able to calm her down and even get her to eat something after we left the lab for school.
I am grateful we were able to get this done. Her doctors acted quickly in getting us the orders and these labs will be so helpful to have before her two big appointments in the next couple weeks. Hopefully, the results will guide us in helping her gain weight, too, as these labs are specifically looking at the way Elizabeth's body absorbs nutrients and also if her body is absorbing iron (more specifically, iron into the bone marrow).
I could go on and on (and on and on and on) about how screwed up our health care system is and also how frustrating it is to drown in medical bills that come about because of caring for an ill loved-one. But at the end of the day, I am grateful for a society where health care is even available. I am also grateful beyond words for doctors who not only care for Elizabeth, but treat her with kindness and urgency.


You got me here and now you want a picture? What am I supposed to do? Smile because I am getting my blood taken?


Yes, Liz. I want you to smile, you brave girl!


Ahhh, post-fasting yumminess.


Practically running into school... where she is always happy.

Update

Today Liz had an appointment at the Hem/Onc office she's been going to for the last year. We were scheduled to see Dr. Finkelstein today, who we haven't seen since he did her first bone marrow biopsy last March (we usually see other docs in the group). Dr. Finkelstein is HIGHLY regarded, a whiz and amazing with children. He is the face of "being passionate about something and dedicating your life to it." He is dedicated to saving lives and helping kids.

Anyway, I was looking forward to getting his take on all that's been going on with Elizabeth. Instead, the Nurse Practitioner walked in to see us. I do not care for her in the first place, so that, coupled with my disappointment of not having Finkelstein in the room, gave me the guts to speak up and say I was expecting Finkelstein and would wait to see him. She acted irritated, but I did not care.
I am glad I have learned to be an advocate for my daughter. I have had to fight for her and learn this crazy medical system from the inside out, but it is a privledge to do so on her behalf.
Dr. Finkelstein spent 45 minutes with us and was wonderful. He had the girls holding their stomachs in pain from laughing so hard and he held my hand as I held back tears of frustration. Here is what he thinks:

1. I am smart! : ) A professional said it, so I just had to document it : )
2. Liz is too thin and that worries him. Kaitlin was with us today (she never is, but it was a good thing she was today) and he was struck by the size difference and of course the documented changes in Liz's weight. He thinks, like we do, that she isn't absorbing nutrients.....
3.Along with not absorbing nutrients, he thinks maybe she has malabsorption of iron. Rare (not the same as having low iron), but her GI history lends to a reason this could be happening. Malabsorption of iron could lead to issues with marrow and blood counts, which she has ( even though she doesn't have low red cells).
4. She'll have absorption studies done and a specialized series of labs looking at her iron.
5. Dr. Finkelstein will oversee the "what happens next", as far as her blod and bone marrow is concerned, once the results from those studies are in. Take that Mrs. Condesending-Nurse-Practitioner-Meanie! : )
6. Hopefully these labs can get done before her March 24th appointment with her GI doctor so we can come up with a plan of treatment when we see him and have the results before her April 7th appointment with a bone marrow specialist at CH Los Angeles.

A looonnnnggg road to go. But today I feel like a plan may be starting to come together and a diagnosis found. I was heard and validated today and not told that the plan was to "watch her carefully and wait." I am tired of watching and waiting, I need a freaking plan and I feel like we may be on our way to that.

Please pray for wisdom for the doctors and for a diagnosis to be found so that we can treat Elizabeth. Pray for patience for her as she enters this next month of heavy testing and visits to the doctor and hospital.

My happiness...

On a whim I took pictures of the kids tonight. Elizabeth looks GREAT today! Totally, wonderfully, absolutely great! Her cheeks are sun-kissed after a weekend in the sun and her eyes don't look as sunken. The giggles and the way the girls are intertwined make me smile. What happiness in these pictures! Thank you God for my beautiful, happy, loving children. How lucky am I?!