Can you see me?

My burdens... people carry much heavier loads.
My worries... some worry much more.
My frustration... some have more.
My sadness... some are much more sad than I am.
No matter what, there is always someone who has it harder than we do; someone who has it harder than I do. I know this.
Still, I am tired of worrying and feeling frustrated and burdened.

You know how some say that their physical appearance doesn't reflect the "real them?"
I feel something similar to that... I feel like my worry takes away who I really am.
I am happy and silly. I am positive and faithful. I am optimistic and I love to laugh.
Those things get covered up more often than I like lately.

I am tired. So, so tired. Tired of worry and frustration. Tired of waiting rooms and jumping at the phone during the school day knowing it may be the school calling about Elizabeth. I am tired of medical bills and time spent at doctor's offices. I am tired of dinner time being interrupted by Elizabeth's pain from eating and plans ruined because she doesn't feel well. I am tired of feeling superficial some days in conversation with dear friends because I am just too tired to talk and can't concentrate on discussion. I am tired of not being involved in things like I was a year ago. I am tired of being tired.

I feel guilty being this tired'guilty feeling this burdened. There are others who have it so much worse and my days, with my beautiful otherwise healthy family, must seem like a walk in the park to them.
I just want normal back. I want to not be tired. I want to reflect who I really am. I want you all to see the real me..because I really am so happy. Happy is just covered up by fatigue and worry right now.

In Lulu's words

Today I have had some alone time with Liz, as Katilin is spending the afternoon with my parents. I decided to do a little interview with her, similar to the one I did with Jackson. I didn't have expectations of anything other than sass or even nice to be said because Elizabeth has been a terror for the last few days. Her answers came quick and she was sincere. I am so glad I decided to do this, as it has made me feel better about her. I know that even though she is acting out horribly lately, she really does love her family and even loves being with us above all else.



What do you want to be when you grow up?
A fashion designer...in Paris!

Who is your best friend?
Emily

What is your favorite thing to do?
Spend time with my family or make dresses

What is your favorite song?
Butterfly

What are you scared of?
Spiders (boo! I have raised the girls not to fear them!), surgery and my family getting old.

Who makes you feel safe?
My family

What is your favorite food?
Sushi

Who makes your heart happy?
My family and friends

What are you thankful for?
My family and Jesus and my house

Who is your favorite person?
Jesus and my bff Emily and, I don't want to make you guys feel bad, so you and Katie are in 3rd place. (Gee, thanks!)

Where do you want to visit?
Paris

Where is your favorite place we go on trips?
Our beach house!

Who makes you laugh?
My bff. Katie is funny too, but don't tell her.

What is your favorite room in the house?
My bedroom because of privacy and I have a couch in there.

What makes you sad?
When people cry.

What makes you happy?
You guys! My family.

What would be a dream come true for you?
Making my own wedding dress, in Paris(at least the kid is consistant!). And going to Italy

If you could change anything, what would you change?
I would never have surgery or feel sick again. (knife in my heart!)

Who is your hero?
Jesus (wow!)

La, La, la, La....

I LOVE music. In our home there is most often always music playing. Growing up, music was always on - I can sing along with any James Taylor song. Do you know songs by Larry Gatlin and the Gatlin brothers? No? Thanks to my parents (or better said, no thanks to my parents), I do! Don't even get me started on having a sister who lived her whole childhood as a musical. Megan knew every movie score and the lines to every commercial that had a song in it. Megan's payback is now having her own daughter go through life in song. Music was everywhere. It can remind you of people and places and times, and move you. Music tells a story; it can tell your story. It bonds and encourages and heals.

The songs you hear playing on my blog were chosen because:
Butterfly - I told you in a past blog post how I sing this song to the girls. The words are meaningful and beautiful.

Come to Jesus - mmmm. Listen to the words. Weak, burdened, lost I will always go to Him; I will praise Him. Oh, how I pray my children will live the same.

Gratitude - This song is fitting to my life right now. I can relate to asking Him for things and not getting what I so badly wish for (I am not only speaking of material things), but recognizing that I should trust. From not receiving what I think I need, I may be blesed in other ways. It certainly reminds me to be grateful for what I do have and to trust.

I Belong - Are you noticing a pattern? : )
"Not hardship nor hunger, no pain or depth of sorrow. Not weakness nor failure no broken dream or promise...nothing can take me from Your great love. Forever this truth remains, I belong." I love this reminder.

The Ludlows - This piece is from the movie Legends of The Fall. I have always liked this one! And, it reminds me of Brad Pitt. Kidding! Maybe.

To Make You Feel My Love - Such a beautiful Bob Dylan song and I love the way Kris Allen sings it.

Lullaby - I heard this song as a teen and even then it spoke to me. Now as a parent, I have to say it's a bit unsettling to think of the words. Still, it is beautiful song written by Billy Joel for his daughter and I can understand what he is singing to her.

Return To Pooh Corner - I have known the words to this song for as long as I can remember. My mom first played this song in our home and I have played this Kenny Loggins cd for my kids since they were born.

A song that is not on the blog is Smile.... "Smile though your heart is aching. Smile even though it's breaking. When there are clouds in the sky you'll get by. If you smile through your pain and sorrow, smile and maybe tomorrow you'll see the sun come shining through, for you." I started singing this to the girls (actually, for myself) when they were in the hospital after both having had surgery. Ever since, it is one of the songs I sing to Liz when she is waking from anesthesia or sick.

Holly

Today is Holly's birthday...what better day to tell you all about my friend; about one of my best friends.
I've said before that I think sometimes God looks at us and thinks "Have I got a friend for you!" Holly is that friend for me. Last year, I met her via her blog. We'd actually gone to the same high school had some of the same childhood friends and even had the same crush. Okay, she's going to call me out on it so I'll be honest... I had the crush and turns out she was dating the very boy I used to stare at and wish for!
If you haven't ever read the blog (mysuperspence.blogspot.com), you must. It is a diary of bravery, heartbreak, strength, tenacity, joy and above all else, faith.
We started talking and the rest is history. God knew I needed her friendship. There is nothing like having a friend who makes your spirit, your heart, feel "home" when you are with that person or talking to her.
Everyone should know Holly. She is so fun...sometimes to the point of annoyance! If her fun factor isn't annoying enough at times, add in her awesome cooking and crafting skills and that little Martha makes me want to gag sometimes, seriously! She is positive and loyal. Holly is in L-O-V-E with her husband and more than devoted to her children. She has a faith that even cancer can't shake. And she is so, so brave. I cannot tell you how brave she is.
I love you to Utah and back, Holly Gooch! I thank God you were born and I am grateful for your friendship.

My sweet Kaitlin

My Kaitlin is such a gift!
I often say that God knew what he was doing giving Elizabeth
the health issues (if one of us had to have them) because she
is so brave and tolerant. But He also knew (of course He did)
that Kailtin is exactly what our family needed.
Today Kaitlin received the character award for responsibility at school. This is the 3rd year she has been recognized for this trait. She IS responsible. And she is so much more.
I remember staring into her eyes when she was a baby and thinking "oh, this child has been here before." As a new mom, I felt like she was thinking "are you sure you should be doing this that way?!" When she was a toddler, she would look at me in such a way that I actually felt self conscious and sometimes "caught." Now that she is older, she uses words instead of stares to tell us when things are unjust or should be a certain way (most often a way other than we are doing them).
She is kind and sensitive and caring. She adores her brother and has always been such a wonderful playmate for him. She will lead finger-pistol shoot outs and orchestrate army wars for him. She can soothe her baby cousin's cries when I cannot. Kaitlin can find anything. I can't tell you how often someone in the family calls to her to find a lost earring, remote, shoe, ect. She loves order and I bet that when she is older she may become a lawyer or officer, as she expects things to be orderly and just. I have joked that I worry Liz will end up on the pole and Kaitlin will be the police officer arresting her. That just sums up the differences in their wonderful personalities! Kaitlin doesn't express emotion or cuddle often, but when she does, she does so in the best ways and means what she is saying or how she is holding you with all of her being. For two years it was all I could do to keep that girl looking clean and somewhat put together. She just didn't care what her clothes looked like or if her hair was brushed. I finally just made a rule that she had to try not to look homeless when she went to school or church! Kaitlin faints at the sight of her own blood and is a horrible patient when she is sick. She has a hot temper and is passionate about her beliefs. She has always been someone who stands back and assesses a situation before jumping in or joining. Katie loves science and to put things together. She likes to quote scripture. She seems to know who she is and never makes excuses for what she likes to do or what she believes. I love this about her. I love so much about her!

My sweet, sweet Kaitlin was given to me for so many reasons, but I am sure that the biggest reasons are to remind me to step back and evaluate things when life is chaotic, to remember to stand up for what I believe in, and to hold people I care about so close that words aren't needed.

Giggles

Things that have made me giggle and smile in the last week:

* Upon seeing my "broken car" after my little (BIG!) fender bender Jackson said "Why you not use your horn or look where you going?!"

* Jackson, while being stuck for the 5th time while trying to start a second IV line told me "You should take me to new hosible (hospital)!"

* When I called home early the other morning, no one answered. I thought Walt and the girls must have overslept, as they should have been getting ready for school. Instead, I tracked them down on Walt's cell and they were at IHOP having breakfast.... on a school day!

* When Jackson says "emerngaseek" (emergency) or "bisussing" (disgusting)and his new obsession with using the word "actually"

* Elizabeth asking me if there is a bad-word dictionary so she can read it and find out what naughty words she isn't allowed to say.

* A card Jackson received from a Kindergartener friend who drew a picture of a thermometer and wrote "Your temperature should be 98.6, you know!" What Kinder knows that?!

* Kaitlin using the phrase " a girl's gotta do what a girl's gotta do!" to defend herself when she was being disciplined.

* The fact that the girls casually mentioned that while I'd been in the hospital with Jack, they'd had donuts for breakfast...4 days in a row!

*PS - the girls usage of LOL and BRB and OMG....and so on, has gone from silly-cute to ANNOYING!

Privilege translated

Some of you know that I volunteer as a Parent to Parent Mentor/Family Advisor at the Children's Hospital. It is a way for me to take what I have learned and experienced over the years of dealing with Elizabeth's health and use it for good.
I have the privilege of being with families when they are at their most vulnerable and most times, their weakest. I say it is a privilege because I am given access into the lives of the patients/families as they express their emotions and thoughts amidst their frustrations and fears. I walk in to a hospital room as a stranger and in many cases I end up sitting face to face with a parent who is crying. Or I end up holding the hand of a mother who just needs comfort as she struggles to carry the weight of her world on her shoulders, during her child's illness. How often does that happen in daily life? Not often.
Today I met with a mom who at first appeared so stoic and calm. She literally collapsed in tears within 10 minutes of sharing her story. I cannot express to you how it feels to watch another mother cry out, wail in tears, over her child. Her husband later told me "My wife is overwhelmed because she has only been in this country for 3 years. She is not used to the American ways or hospitals!" I had to bite my tongue, as I wanted to shake him and say "No, your wife is overwhelmed because your son has a devastating (new)diagnosis and it wouldn't matter what country she was in, she would still feel this overwhelming and horrible sadness!" She spoke a language that all mothers can understand. It is a language of raw heartache and desperation.... and as she spoke through her tears in her thick accent and struggled for the correct translation, I told her that. I understood every word.

Long nights and an incident

{I have been up for the past three nights with Jackson, who is sick. Literally, I have had a combined 5-6 hours of sleep over the past three nights. As I have held him for hours straight while the rest of the house is sleeping, I have relived his baby years in my head.
I wanted a baby so badly after having the girls. We'd planned to have another child sooner than we did, but we were waiting for a year of Liz being healthy and for things to settle down. Once the girls were 4 years old, I started begging Walter for a baby. I went so far as to promise, to swear, that he'd never have to change a diaper or get up during the night. Of course he changed hundreds of diapers and got up with Jackson countless nights!
When I was pregnant with my wish-come-true, I would sit in the nursery, dreaming of how this baby boy would change our lives. Once Jackson was here, I would rock him during the night, much like I have the last three nights, and whisper stories of adventures he may have and dreams of all I wanted for him.
These last three nights have been exhausting, but gosh, I have once again been given hours in the still of the night, when there is no one else in the world to bother us, to just stare at my big baby boy (remember doing that as your newborn slept in your arms?) and hold him close and whisper how much I love who he is and how happy I am God chose me to be his mommy.

{ The photo above was taken at the beach house in August. Jack's birthday always falls during our week at the beach and so we celebrate with family there. In this photo, Kaitlin is holding Jack as he prepared to open the gift from her. I chose to share this picture because I wanted to write about both Jack and Katie tonight.....
THIS story will make you laugh!

Two years ago, Kaitlin came to me, crying and saying her eyes were burning. I was calm because, oh how I cannot tell you how much of a "baby" Kaitlin is when it comes to injury or illness. She has SO many wonderful gifts and traits...but bravery in illness or injury is not one of them. My little scientist in the making seriously faints at the sight of her own blood.
I calmly asked what she was talking about and she just kept saying her eyes were burning. I saw that her eyes were tearing and so I handed her Kleenex to dab at them. Over the next minute, her face began to get more red and her eyes became swollen. I started to get a bit worried because she couldn't tell me why her eyes were burning or her face was swelling. As she started to vomit and become frantic, I finally got her to walk me to the site of the "incident".... my car.
That girl had gone into my car and with the doors shut, went into the glove compartment.... and pepper sprayed herself!!!! She thought the can was perfume, so she sprayed it in the air and then head-dove into it, as to get the perfume sent on her body!!! Are you laughing yet? I am!!! Have you nominated me for Mom Of The Year yet?
I was pretty sure she was going to live, but also knew it couldn't have been a good thing to have had pepper sprayed yourself in a closed car. What does one do when their child has pepper sprayed herself?! I called a friend who is an officer and he said she'd be fine after she washed out her eyes and her face and had a glass of milk... and to watch her closely for a bit.
Can you picture this? It is just too funny and I will never forget her swollen little face.... or how much I have laughed over what I have since named the "Pepper perfume incident."

I trust you

I remember taking this picture. Elizabeth is in a hanging, pod-shaped hammock. She looks almost angelic in this photo, but she had been so afraid to sit in that hammock, suspended above the safety of ground. I had coaxed her by asking her to "just trust Mommy."

I shared in a recent blog that Elizabeth will need anther bone marrow aspiration done. When the doctor was talking to me, Liz was sitting in the room and hearing our conversation. I assumed she hadn't been listening, though, because she had no reaction to the news in the office and hadn't said anything about it in the two weeks since that appointment.
Liz has always had an amazing ability to calm herself; to mentally take herself away from a situation. More than a handful of times, a nurse has asked the anesthesiologist what he/she has given Elizabeth before sedation or being put to sleep, when she actually hasn't been given anything at all. She just has a way of, it sounds dramatic, but becoming transcendent-like.
So, when she had no reaction to the news I knew we both heard, but assumed she hadn't been listening to, I was relieved and decided to tell her about the procedure when the date drew closer.
Elizabeth had been listening though and told her Therapist that she would need another bone marrow aspiration because her marrow is abnormal. I was shocked and asked her "Why haven't you said anything to me? Don't you have questions? Don't you feel like telling me 'NO WAY, I am not going through that again!'?"
Her response made me cry.... "I know that you know the answers about why I have to have it, Mom. So I just will. I trust you."
I can't tell you how awful things have been between Elizabeth and me lately. She resents me and I am the person she takes out her anger and frustration on. Though she knows I take care of her, she is so young, so she also sees me as the person who allows painful and unfair things to be done to her. She has gone so far as to say that I let "them" (the doctors) hurt her. As a parent, that is such a painful thing to hear my child say. She cannot understand though. She doesn't yet know that as her mom, my instincts take over and when I see her in pain, it takes everything I have to not pick her up from the gurney or pull her from the arms of the OR nurse as she is carried away. She doesn't know that I literally hurt for her; with her and how her words of anger and frustration stab at me. She doesn't know how often I rally others to pray for her or how, in prayer, I plead to take her place if one of us has to have health problems.

But, she does know she can trust me...so much so that when asked to go through all of these things she trusts me enough to say "I just will."

Butterfly

Elizabeth loves butterflies! She says they are special to her and will tell you how they are good luck for her. She'll also tell you how during a hospitalization last year and the year before, two butterflies would visit her 2nd story window; dancing for her. I am never able to look at a butterfly without thinking of my Elizabeth. The song you hear now is one I have sung to the girls.

I have said that I am using this blog, more than anything, as a journal for me. I am not good at keeping a journal and I have had others say that journaling on the computer is easier than writing in a book. So, since this blog will serve as a record, I am going to do an update on Elizabeth's health. I am terrible at recording things in regards to her health. I loose track of surgery dates - even years!- and I forget illnesses and major procedures. I am organized and manage her care and have a binder full of records and reports, and now a calendar for charting fevers. But, I admit that I don't keep track of it all. My mom and others have suggested I write down everything. I just can't do that. I think, every time, that we will be past this. That each procedure or surgery will be the last and so why should I track it. Nine years into this, it sounds silly, but I really think it will just all go away. I refuse to let Elizabeth ever think of herself as the "sick" kid in our family or amongst her peers. I won't let it define her.

Anyway, in an effort to record, this is the update:
Dr. Simon (Hem/Onc) has explained to us that Liz's bone marrow is hypocellular. Whereas it should be 90% cellular, hers is only 15%. She will have another bone marrow aspiration in March to see if her marrow has recovered, stayed the same, or gotten worse. In the mean time, we'll wacth her recurring fevers and her white count and platelets (we're watching all blood counts, but those are the two that have been so low intermittently).
There was talk among the doctors and the Infectious Diseases doc that she may have caught a virus last January, right at the time of her last surgery, and it just knocked out her system a bit. That her counts stayed low because she kept getting sick, but she was getting sick because her counts were low. A cycle. I don't think the doctors think that is the case anymore.
I have been having to give her her anti nausea med. more than usual for the last two months. She's also been complaining of abdominal pain and she hasn't been eating well. Her GI doctor has put her on a new medication and is watching that closely. We learned two weeks ago that her liver is mildly enlarged. Her liver labs look good though, so we'll follow up on that at the end of the month.
She has only gained 4 pounds in the past year and a half and is only in the 25% for weight, so we'll be meeting with a dietitian again next month.
Nine years, 6 surgeries and too many procedures and hospitalizations to keep track of, I can't believe she is still dealing with all of this. I can't believe that we may be dealing with a new diagnosis. I can't believe any of it.
And still, what can we do but just go with it and take it as it comes, knowing that each time it may be the last time we'll have to deal with any of it.

There are no words to use to tell you how brave Elizabeth is. Can you imagine going through all of this in such a little life's time? When I sing this song to her, sometimes the words take my breath away. "Don't you worry, hold on tight, I promise you that there will come a day." She has no idea of the meaning of those words to me, of course. She has no idea that when I sing the words to her I am, inside, pleading with her to be patient and I promise that one day she won't have to go through all of this or feel sick. She only knows what I tell her... that she is amazing, my butterfly.

Caterpillar in the tree
How you wonder who'll you'll be
Can't go far but you can always dream
Wish you may and wish you might
Don't you worry hold on tight
I promise you that there will come a day
Butterfly fly away

Is there real estate in heaven?

There has been talk of heaven in our home lately, by the girls. Many questions that tear at a mommy's heart.... and at least one that still makes me smile. "Mom, is there real estate in heaven?" To truly appreciate this question, you have to know how interested the girls are with anything having to do with homes and real estate. This is purely my doing. They have a TV in their room and fall asleep with it on each night. Elizabeth, especially when she was younger, was so used to the noise of a hospital and the glare from machines that she did better falling asleep with the TV on. Over time though, we realized having one of her shows on was not going to work. So, the girls fall asleep to the Home and Garden network. Scratch that, they used to fall asleep to that. They now LOVE the channel so much that we've had to switch to them going to sleep to the Food Network. Anyway, they know much to much about real estate for 9 year olds. In fact they tel me weekly that our home would be worth more if we would invest in upgrading the kitchen. And when we chose granite for the bath remodel, they approved saying that buyers would appreciate that attention to detail. Ha!
So, when they asked about real estate in heaven, my heart smiled.
It is easy to give answers to questions about heaven in most situations. But when I have had Liz ask me about heaven while she is on the gurney awaiting surgery, I cannot tell you how difficult it is to answer that. When she has asked "Could I die in surgery?" I have been honest. So difficult.
Lately, Liz has asked me "who will be there to meet me if no one I know is already there?"
Heart wrenching. My stomach turned and I gasped. Of course reaction is to say "Oh NO, Liz, I will be there waiting for you!"
I can't promise that, though. None of us can. And so I have to assure her that she will be welcomed first by Him and then by many who love and care for her (...and most likely me); that that would happen for any of us.
I was talking to a friend yesterday about this. I shared with her that I want the kids to know, without question or hesitation, that heaven is such a safe and wonderful place; that they won't be afraid of it. I then told her "I think Elizabeth knows. Why do you think she would, but not the other two?" My sweet friend answered "Because she has felt the hand of God before. He has been there and she has felt Him. Kate and Jack will have that one day too, but for Liz, she has already felt Him stand beside her."
It is easier to be less afraid of heaven, less afraid of dying when we know Christ.
One day, I will be there with all of them, in some awesome real estate!

An interview...

I decided to interview my little guy, as he sat curled up in my lap, sad because the girls didn't want him to have any part in their play date. Little brothers don't mix well with boy-talk, giggles and dancing. His answers are great! Unedited, here they are:

Why are you sad?
"Cause the girls are mean and you won't take me to Chuck-E-Cheese"
I'm sorry. Can I ask you some questions?
"Then you take me to Chuck-E-Chesse?"
No, not today. I want to talk to you though.
"Then after questions and talking we can go to Chuck-E-Cheese?"
No.
"I want daddy!"
What do you want to be when you grow up?
"Santa Claus! No, actually (his new favorite word), a police man."
Who is your best friend? (I knew I'd get him to talk if I asked about his buds)
"Jesse and Caden"
What is your favorite thing to do?
"Play with toys. I have lots."
What are you scared of?
"Waspessss" (love that he added "essss")
Who makes you feel safe?
"You!"
What is your favorite thing to wear?
"My pirate shirt and my grey shoes. I only like jeans. I keep telling you that!"
Where do you think the clouds go when we can't see them?
"To another house and to Earth"
What is your favorite song?
"Jesus loves me" (he is now singing, but has added Jingle Bells to the song. A remix, I guess)
What is your favorite thing to eat?
"Macamoni and apples. Or cheeseburgers. Not shrimp"
Who do you like most in the whole wide world?
"Jesse's mommy. Don't tell her! (totally smirking)
What are you thankful for?
"My momma" (TAKE THAT, Jesse's mom! : ) )
Who makes your heart happy?
"Um, God. Don't you know the song Jesus Loves Me?!"

I love this child! You can totally hear him in these answers- he is fun and matter-of-fact. There is no in between with Jax. He is either hot or cold. He loves everyone...including Jesse's mom. Hmph! What makes you so great, Melisa, that you came to mind as his most-liked person in his whole world?! : )
When he is older, I think that people will refer to him as someone who works hard and plays hard and who loves his God and his family. I pray for those things.
What I know for certain is that he has been such a light for us. He is joyful and brings joy... and I love him more than he will ever know.

Mr. August

I came across two photos of my Jax that I just had to share -
In the middle of trying to paint 3 rooms in 2 days, my Jackson wanted to be a helper. How could I resist? Especially when, after telling him to get a hat so the paint wouldn't get in his hair, he returned with a hockey helmet on and a tattoo on his arm ( I guess all painters must wear tattoos?)! This child painted, head tilted back from the weight of that adult helmet, with the biggest smile on his face. He actually did a great job and made the task fun for me. I will never forget the sight of him in his painting gear.




Oh my goodness! I had forgotten about this picture until I found it tonight. I can't stop laughing at this silly, silly boy! Doesn't it look like he is posing for a Firemen Calendar?! He stood outside of my sister's house like this for 15 minutes; totally in the "zone" and posing for who-knows-who. Even better than the photo itself, the boots that are on the wrong feet, the fact that he wasn't wearing any underwear (seriously), or the expression on his face.... better than all of those things is that this child makes me laugh every day. He is comic relief (and most times dead serious while he's delivering it, as he doesn't know he is so funny). I love my Mr. August!

Waves

The past 9 years have felt like waves crashing over us. I love the ocean and just about every metaphor that it stands for.... waves of peace, washing things away and making anew, the beauty of it. Still, even in the quiet peace that comes with the ocean, the crashing and often violent waves remind us of its power, its dominance and how nothing in the ocean stays settled for long.
I have wrestled in my mind over how to share what I (sometimes we) have been through in the past 9 years. It seems a daunting task to share it and I don't want to come off negative or depressing. Still, the fact is that we have been through some, um, ish ("ish" = shit, horrible things, things I don't have time for!)and if I weren't to share it, I would not be as candid as I want this blog to be. The biggest reason for sharing these difficult times with you is because each one as shaped me in a way and it is important to know where I am coming from. So, I have made a compromise and will dedicate this one blog to a run down of the waves that have crashed in around me.
Once the twins were born, I knew something was wrong with them. They stayed only a week in the hospital for being jaundiced and then came home. I voiced to the pediatrician that I thought they were vomiting way too much and that they seemed to have chest congestion and trouble breathing at times. For 6 weeks the doctor told me the girls had a cold. I should have listened to my mommy-instinct, but I went with his word, which to me was gold. Finally, at 6 weeks, my mama-bear came out and I insisted for further help for the girls. They were seen by a GI doctor and hospitalized right away. The girls were found to have horrible oxygen levels and the worst reflux that hospital had ever seen. We stayed for 19 days and the girls were sent home on 13 medications each, apnea monitors and oxygen (they had aspirated so many times that they had developed chronic pneumonia and lung disease). It was overwhelming. At 4 months old, they both had surgery for reflux on the same day, by the same surgeon. Kaitlin (though she was hospitalized multiple times in the year that followed for kidney reflux and febrile seizures and has mild asthma now) has been healthy since. Elizabeth, as you know, has not.
When the girls were 5 months old, Walter became sick. He was always tired, coughing up blood and had horrible stomach issues. I was irritated, thinking that he was just tired from having newborns and the stress that we'd been dealing with. I quickly lost compassion and wished for him to get control of mind over matter. A month later, we found the cause.... our home had toxic mold. I think this was around the time I started using the phrase "Are you freaking kidding me?!" We moved out of the house for what we thought would be a week, while the mold was treated..... and we never went back. Literally. We left with a week's worth of clothing and supplies and we never were allowed to step foot back in the house. The mold was caused by a slow leak and was found to be in every wall of the house. That home was our first together and we'd spent only a year in it, but we'd invested so much time and money into it. All of the clothing and stuffed animals and blankets and linens and even some furniture could not be saved. We lost it all. It literally makes my stomach churn to even hear someone speak of mold.
We got through it, though and kept going; kept wading through what had become a very chaotic life, as we were still dealing with Elizabeth's health and faced her second surgery. I could go on and on about her health and the surgeries that followed, but I won't now. And I could share about the waves that have crashed in around our marriage, but I will save that for another day.
There are always going to be waves. I have come to expect that they will just happen, but I also recognize that in my life the waves always end up bringing to me the thing I love most about the ocean... an overwhelming sense of peace.

*** The photos:
*I can still hear the kids' shrieks as they stood in a circle and watched the water cover their feet...waiting for sand crabs to come to the surface and scurry away.
*The second photo, of Elizabeth at about age 3, is one of my favorite. In fact, I have it hanging in my bedroom. You can see how far up on the shore she was, yet she ran from the waves even on the safety of the sand. Those giggles; the delight in her face... mmmm, you can feel it.
*And I chose another photo of Liz to share because in this picture, taken at our beach house just months ago, she is in the middle of the ocean, arms spread wide, inviting the waves to crash all around her. Talk about a metaphor... my Liz, once so afraid, now beckons the waves to crash at her feet. Nothing will sweep her away.

Pouting, Potatoes and a Plunger

I had a blog all written...in my head. Ironically, I was going to share how strong I think I am; how strong I know I am! Instead, because life is so freaking funny, I found myself with my head under the kitchen sink and sobbing.
Elizabeth asked me to make our family's "Party Potaotes" tonight. It is a yummy, fattening dish and since she needs to gain weight I was happy to make them for her. She was excited to help me in the kitchen and her excitement meant extra bowls used, extra spoons and mixers covered in the white mess that is party potatoes. We made such a mess! As I was starting to do dishes while the potatoes were in the oven, it became obvious that the sink was stopped up...big time. Both sides were full of disgusting water. The plunger didn't help any. Not a big deal in the scheme of things. A huge inconvinience (especially to a nurotic person like me who hates going to bed with dishes in the sink) but in the big picture, this isn't a huge deal. Still.... I cried.
I wasn't tearing or quietly crying to myself, I was heavily sobbing...enough to make my head bob up and down on the cold 70's linoleum that lines the floor of the cabinet under the sink. I never cry in front of the kids. Alright, that isn't completely true. I have cried in front of them before, but I know it worries them-and scares them enough to have them rush to clean up toys or complete a chore, as they try to "make it better" in the only way their little heads know how. So, like most other mommies, I cry in the shower or in the car. Even in our tears, moms are selfless and cry in places where we are least likely to upset those around us.
Crying over a stopped up sink is ridiculous... so ridiculous that I am not crying over the sink. I am crying because the stupid sink situation set me off. It is even close to a metaphor- I want to make Liz happy and help her gain weight by fixing her a meal she requested and it couldn't just be that simple; that nice. It didn't go according to plan and it wasn't easy.
As I stood in front of the sink with the stupid plunger, my sweet Jackson came up behind me, put his little-man arm around my waist and said "It's ok mommy. Good thing you have bright side!" Oh my goodness, talk about snapping me out of my self-pity moment. Where did he get that? How did he know to say that at such an appropriate time?
I stopped crying and just started to giggle at my silly, smart, sweet Jackson. And then, I made them pose for a picture (because it is totally normal to have your kids pose in front of a sewage-filled sink and dinner on the counter next to it).
So, I do not feel strong today AT ALL and I sobbed and pouted in front of the kids, but at least the potatoes were supper yummy!

"This was the beginning"

When I look at this photo I think "this was the beginning!" Before that time, before the girls, I had no idea what I was made of...or what was in store for me. Before I get to that, can I just say how cute the girls were?! Liz is on the left. When the girls were first born, Kaitlin was actually the sicker of the two... which is why she was still on oxygen 24/7 at the time of this photo. How precious are their little rolls and the drool-soaked onsies?

The girls were born on our first anniversary. Two months after our wedding I had my 4th surgery for endometriosis. My doctor advised that if we wanted children, we may want to start trying sooner rather than later as it could take years to get pregnant. A month after that advice we were pregnant, naturally, with twins. My poor, poor husband! Our five year plan for enjoying the newlywed stage and then starting a family went out the window. Elizabeth and Kaitlin arrived and our family was born.

I have so much to say and yet as I sit here staring at the screen, I am doubting my decision to keep a blog. What do I want to share? Will anyone even care to read it? Will the words come? I spent a ridiculous amount of time even deciding on a title for my blog. Some of the names I came up with were awful! Finally, after going back and forth with a friend, sharing my ideas, she responded "I think you should do GRATEFUL NOELS- it is who you are!" So out went Are we There Yet?, Eventually.Soon.Someday (more on that title later) or Are you freaking Kidding Me?! (two of those were already taken anyway... turns out there are plenty of others who voice their frustrations in aggressive blog titles). I decided on Grateful Me. I dropped the "Noels" as I'm not going to speak to the gratefulness of the other 4 in this family. Another day I may have gone with adding them into my title, but as the kids fought over brand new toys and Walter griped over who-knows-what as I was titling this blog, I didn't sense any gratefulness. So, they are out : )
I have committed. The title has been chosen and my first entry posted. I have no idea what words will fill this blog or if anyone will read it. I do know that at the very least it will become a journal for me and help me remember what at least one friend already knows... Grateful (Me) is who I am.