Life is wonderful and difficult... and I am grateful!

Saturday, February 26, 2011

Top of the world

There are places our family loves to go to...Signal Hill is one of them. Today is so unbelievably beautiful it would be a waste not to head up to see the view. It was gorgeous and the clouds look like cotton candy, ready to be grabbed. Perfect!

Jackson calls Signal Hill "top of the world"....

Not a care in the world on a day like today! Oh, my happy heart.

"Maybe that plane is going to see Uncle Travis in Canada!"

"Look, there's Canada!" For the last time kids, that is Big Bear! Oh my goodness, when do they study Geography?!

Yesterday they "hated being twins!!!" but last night they slept in the same bed. Silly girls.

How can you look at him and not smile? His Kermit The Frog grin (his wide smile reminds me of Kermit) makes my heart melt every time.

Sweet Kate

Friday, February 25, 2011

Having construction going on is so exciting for Jackson. He loves watching they guys and asking questions. Michael, our contractor, let Jax get in on the action and he couldn't have been more happy! He'd help a bit, wipe his brow, then sigh and help some more. Such a fun kid!

{Working up the courage to go under...}

{He did it!!!}

{Prepping the floor for tile. Mike is so patient with him.}

{Life lesson....if you are going to help with the fun stuff, you have to help clean up.}

{I let him take a picture of "his work."}

Monday, February 21, 2011

Skinny girl

One of my only pictures holding Elizabeth as a baby. I was horrible about allowing my picture to be taken. I choose to post this photo of Liz with this blog post because I love how chubby her cheeks were! Most often, children with horrible reflux are underweight. My girls were two of the most severe cases of reflux ever seen by doctors, yet the maintained their yummy folds of baby fat (partly due to the special formula they were on). So stinkin' cute!

Last night, out of nowhere, Elizabeth said "Some kids say maybe I will die because I am so skinny!"
I asked her what kids have said that - I couldn't assume at first that they hadn't, given that last month we dealt with a classmate telling both her and Katie that she was probably going to die in surgery.- When I asked, she replied "just kids."
I knew that no one had said that at all and she was just voicing a fear about herself without wanting to come out and say that she is afraid of being skinny and dying.

Uhhh, my heart! Walter was in the room and heard her and we both just locked eyes and bowed our heads. No matter how hard I have tried all these years, and especially this year, to keep her from feeling different, even special, it has caught up with us. The normalcy, the brushing-off of fears and alarm I constantly do, even the years of therapy she has had.... I can't keep her from her feelings and fears.

I explained to her how our bodies absorb nutrients and calories after we eat and how her doctors feel maybe her body isn't absorbing those things. I told her that we are going to start working on finding out if this is the case and also how she can gain some weight in a healthy way. She responded by asking when and letting me know that the stupid doctors have had enough time to figure it out. {ha!} I explained to her that her tummy issues are separate from her blood issues. She just kept insisting on knowing how long, how long, how long. I told her soon. She answered "yeah right, I've heard that before!" Oh, my sassy little girl!

How difficult it must be to have an identical twin and compare yourself to your healthy mirror-image. I worry as she is entering the pre-teen years how her body image is being affected by all of this. Oh man this is tough stuff!

Ultimately, all I could do was say I understood her frustration and disbelief that we will soon get answers and help her. And I looked into her eyes, told her not to worry and promised that she will not die because she is skinny.

Daddy's girls

Walter has faults... but, don't we all? One of the things I love most about him is how he tries to connect with his children. This is a man who had no siblings growing up and so connecting with children, other than in friendship, is something that was foreign to him. Being a father to Jackson is more natural, though still not as easy as it would be had he had a father of his own in his life. Connecting with his daughters, I can imagine (and I witness), must take work...and he does work at it.
When we found out we were having twins all I could think was "Oh please let them be boys!" I thought that would take the sting out of Walter learning he'd have two at the same time. He has been a loving and doting father to the girls and I don't know what I was ever worried about. I do feel sometimes that I am teaching him so many things about parenting girls, but he does his very best.
Many nights, before tucking them into bed, I will find the three of them sitting and talking. Most often he his teasing them about their latest crush or the current songs they sing or things they say. In the photo above, I had no idea what they were talking about when I snuck a picture. Walt later told me that the girls were counting change and when he asked them what they were saving for they replied "A car. Oh, and a couple's dinner cruise for when we are older!" Can you imagine how difficult it was for him not to laugh?!
It is such an experience to sit back (alright, I interject much of the time) and watch Walt parent girls.... while half the time it is really they who are teaching him so many things about loving and life.

Saturday, February 19, 2011


Liz, about a year ago, looking good and loving to eat!!

I took a week off of dealing with doctors, plans or schedules. In fact, I saw two of Liz's doctors in the hospital when I was there on Wednesday and I steered clear. Really. I just needed time away from it all. WE ALL needed time away from it all. Thankfully, Liz's body must have received the memo, because she had a good week and that only helped my little medical sabbatical. We even ate at Buca Di Beppo, which is a place that is usually like kryptonite for her. Pasta and bread is the worst thing she can eat in terms of causing her horrible pain and, often, retching. Thankfully, she did fine with it and we had a fun dinner out. She had four days of complaining of ear pain and my neighbor who is a nurse practitioner was willing to check her ears for me so that we could avoid a "normal" trip to the pediatrician. She is a mom to a now-strong and healthy 13 year old who had Leukemia as a toddler. She is aware of how tiring it is to constantly go to appointments and the hospital, and has been so kind with looking at Liz to help us avoid a trip to an office. She has sent us to the ER twice, so Liz wants to flee when she sees her coming over with her medical bag, but I grateful for her!
I did make a few phone calls, so will get a few phone calls back next week. Her records have been sent to the Hematology/Oncology Dept. at UCLA and Children's Hospital LA. The nurse practitioner at each office will review and then have her scheduled for consult. The doctors we have been seeing for her blood/bone marrow issues are well regarded, but it is time for second and third opinions. On Tuesday I will also get the ball rolling on meeting with the dietitian and scheduling her blood work for evaluating if she is absorbing enough nutrients (many of us, including a few of her doctors, feel she most likely is not and this is why she is so much smaller than Katie and has fallen off her curve on her growth chart). Lastly and with dread, I will hear from her surgeon as to how and when he thinks we should proceed with her stomach surgery. Blah!
I wish I could put my fingers in my ears, close my eyes and hum, like you see children do when they are showing defiance or are just scared or not wanting to hear what someone is saying. How much easier life would be!

We like-a Ikea!

I sent the kids with Walt to get a snack from the snack bar at Ikea. Only Liz would choose a caesar salad from a store snack bar! She was so silly chowing down on that salad while sitting in the shopping cart as we strolled the aisles.

Heeeellllloooo, ladies!
Jackson has always said he wants a red couch. Imagine his excitement when we turned the corner today and he laid eyes on this couch! In about 20 years, he'll have one in his bachelor pad, I'm sure of it.

Friday, February 18, 2011

These two

These two are special together. They are fire and ice.... and as much as they drive me crazy. they make me smile. How lucky Jackson is to have such a playmate in Kaitlin. Kate can actually be very short tempered and impatient by nature, yet she goes out of her way to show kindess to her brother (...she also seeks him out just to torment him, truth be told). I hope they are friends for always.

Monday, February 14, 2011


Valentine's Day may as well be Christmas in our house, as far as morning excitement goes. The kids love to wake and rush to the dining room which they know will be decorated and have treats waiting for them. This year I scattered rose petals from the girl's room to the table....they thought this was so fun!

My dad has a tradition of delivering gifts to our porch before dawn. How fun it is to open the door and find red and pink packages waiting for us! I think it is sweet that he does this. He puts so much thought into each gift and it shows! He gets more happiness out of this tradition than even we all do receiving his gifts. This year, one of Jackson's gifts from Papa was handmade (by Papa with the help of Kaitlin). It is a ball, bat and helmet holder. My dad made one for Travis (my brother) when he played baseball as a kid. Special!
The photo of the girls with sleepy morning eyes, reading their cards from Walter and me makes me laugh just looking at it! Their expressions are priceless as they read what their daddy included in his note to them. For Kate: "If Grant (her crush) asks you to be his Valentine, I will crush him." For Liz: "If Stephen gives you another rose (he gave her a rose on Friday!), I will cut his hair off." Stephen has the best hair and Liz always talks about it. The girls read the cards and giggled "Daddy!!"

By the way, the race car driver gift bag on the table is for me and is classic! None of us care about race car driving, yet it is the bag the kids chose for my gift. Out of all the bags we have in our gift bag closet, why in the world would they choose this one?! Awesome. What was inside the bag was even more awesome and totally unexpected...a new, beautiful camera!!!

The photo of the kids is great, isn't it?! All my girls in pink and with beautiful smiles. We decided to let Jax in a shot even though he wasn't wearing pink : )

In our home Valentine's Day is about tradition and small acts that are special to us. It is only 11:00am and my heart is full and happy on this day of love. I hope your day is filled with love!

Saturday, February 12, 2011


Today is BEAUTIFUL! I almost feel guilty to be enjoying such a gorgeous day while Travis suffers in -40' weather. Not a typo by the way. He has had negative 40' weather!! How can a person even live in that environment?!

Jackson had his second baseball practice today and was cute as ever. The poor kid is sick yet again with a nasty cold and probably shouldn't have been allowed anywhere near a bat considering how medicated I made him so he didn't have to miss another practice.

We had an afternoon of chores once home from the Field. Jax is my window-guy. He loves that spray bottle and asks me a million times if he "got the spots" and did a good job. I love it!

The photo of the kids in the dirt was taken during their lizard funeral. As I was cleaning the patio today a lizard ran up the wall of the house. Liz wanted to catch it and so she knocked that poor thing off the wall and, well, I assume he had major head trauma. Katie begged me to save it's life but I explained that head trauma cannot be undone with CPR, and besides, I have never learned lizard CPR. The thing actually had life still in him, but my Liz, who must have been socializing during the part of Science where AIR IS NEEDED TO SUSTAIN LIFE (!) is discussed, put the lizard in a jar where he succumbed to his head trauma and suffocation. So, a funeral in honor of the poor little guy is taking place as I write this. I about lost it when I saw that they buried him in my garden, where I was planning on planting this week! Of all the places in the yard, they had to choose to bury him next to the tomatoes and basil.
It is important to note that in my daughters' opinion, a singing competition is required at the funeral of a lizard. Seriously. They are outside with their microphone belting out "Bubbly" right now, over his poor tiny grave. For goodness sake, they could at least be singing hymns!

So, this is our silly, sunny Saturday. I am basking in the warmth of their giggles, eulogies and "hey batter-batter"'s.

Friday, February 11, 2011

Watch and wait

Doesn't my Lulu (my name for her) look so pretty? I took this picture as a cell message for Holly, while at the doctor's office today, The girls wore their "Holly bracelets" (she made us the cutest bracelets) and I wanted to show her. Anyway, because it was taken at the office and because she looks good today, I thought I'd share with all of you. Also, I thought I'd share the song you hear playing with you that a friend (ok, it was Holly who shared that too. Holly, Holly, Holly : ) ) had me listen to. It gave me chills as I listened to the words yesterday and thought of my baby blue-eyed, curly-cued, contagious-smile, little girl who I will hold safe in my arms as we go through this "storm".

The following is what was discussed today at Elizabeth's appointment:
First, most of you already know that the marrow showed NO malignancy. I feel like we've been given a huge gift with this. I am relieved and thankful!! Please know how grateful I feel to not have to face a diagnosis of cancer. My goodness, words just cannot express how grateful I am for that.
After the wish we had for no malignancy, we wished for the report to show that her marrow had recovered in a way, that her marrow be more cellular (remember, her marrow was only 20% cellular at the time of last bone marrow aspiration). The latest report from last week's aspiration shows that her marrow has not "recovered" and in fact may be even less cellular now. Not what we were hoping for!
I could go into other things that were worth noting, but it is a mess of technical terms and would be complicated to try to explain.

I can tell you what the "plan" is.... WAITING. Grrr. I am tired of waiting. Watch and wait, watch and wait. For a freaking year we have watched her and waited. What are we waiting for?! I actually asked the doctor this, in a tone of mommy-exasperation. I told him that of course I care about reports and numbers, but what I care more about and worry about is watching my child change physically. I really did tell him this! I told him that I don't need him or the hospital to tell me that my kid is tired and pale and getting fevers and petechiae. I KNOW, Lord do I know, that there are so many sick, sick children being cared for in that office, but I want a freaking answer about MY baby. I want a plan; I need a plan. On the flip side, I understand that they have tested and tested her for so many things to explain her low white counts, platelets and ANC. I also understand that if they rush and try to treat the marrow (increase it's cellularity) it could do more harm and it carries it's own risks. I asked the doctor to sum it up in a sentence I could use for Liz and he said this- her cells and marrow are functioning. They are just not functioning as well as they should be. He says he has had a few kids like this during his career.
There has been talk that she has something "brewing"...for that we'll just have to wait and see. Still, waiting and watching is getting old. This whole damn process is old and I want out!!!

Elizabeth will go back for counts in 3 weeks. Her platelets had dropped even lower today than they were last week. It concerns me that she is starting the cycle she's been on for the past year.... counts (by counts I mean her white cells, neutrophils and platelets. White cells and neutrophils fight infection and platelets are what helps our blood clot)are low, lower, then they rise and stay normal for a while, then fall back down again. Over the past month she has started the cycle of falling again.

So, she'll go back for counts in 3 weeks. She will have additional bone marrow aspirations done, probably in a few months and then months after that. We'll track her fevers, blah, blah, blah.
The doctor was worried about her weight. He asked is she is retaining, good freaking question. I felt like saying "does she look like she is?!" This issue was already talked about with her gastroenterologist last week after the procedure he did that showed her para-esophageal hernia. She will have some labs done to see if her body is taking in what it should. We'll meet with the dietitian Liz has seen before to work on helping her gain weight. 10 months ago the dietitian gave her a goal of weighing 60 lbs within a certain time frame. That SO did not happen!
As for surgery, I will talk with the surgeon next week. I will not have the surgery done any time soon unless her stomach is at risk of being strangulated. It sounds awful to say, but I won't allow the surgery until the risk and recovery of it outweigh the pain and discomfort she has now. Plus, I want her platelets better before surgery.

Blah! This all seems overwhelming when I write it out. It is, actually.

Thank you, thank you for all of the support you sent our way this week. I am touched by all of you who care so much about my Elizabeth; about our family. I wish I had perfect news to share about the marrow results, but I am rejoicing in the fact that no increased blasts/no malignancy was found in her marrow. For now I will cling to that positivity and we will watch and wait.

Thursday, February 10, 2011


I am worried. I am not worried. I am scared. I am not scared at all. I wish I could decide what the report will show. It is what it is.

My emotions about tomorrow are nothing less than bipolar. Worrying will not change anything. In fact, I think the news is going to be positive. Maybe not perfect, as we know there is something going on with her blood, but I think the report will show nothing horrible. I just truly think it will only be positive news!
And yet.... my heart is heavy and my mind is half racing/half numb.

Mama (Lori) said knock you out!

Elizabeth has been having a huge problem with controlling her aggression. She has been hitting her brother and sister and even hitting and biting me! This is NOT my Liz. She is angry and frustrated about feeling sick, having to be poked and prodded and just feeling different than her peers and us. I can understand her anger. She has been seeing a therapist for about two years now. We first started taking her so that she would have someone to talk to about her feelings in regards to her health. Her anger was never this bad, but it maeks sense because she has never felt this sick.
We are working hard to help her manage her feelings and control her lashing out.

I have a sweet, sweet friend, Lori, who suggested a while ago that we get Liz a punching bag. A great idea....that I never followed up on. This morning when I saw Lori and we were talking about Elizabeth (and Kaitlin too. Lori has twins and it is natural for her to worry about the feelings of Lizzie's sister) and she again offered to drop off her punching bag. Lori is H-O-T hot and I felt bad taking away any part of her fitness routine, as she didn't get that bod by just sitting around : )

Flash forward to 3 hours later and I received a call from the school saying that Liz was sick. I rushed to the school and within 30seconds of seeing her, knew Liz was terribly upset and not actually sick. She had worked herself up so much with tears and worry over an incident with some little meanie. Yesterday she had been upset because she said a boy hit her in the stomach because he was angry that she walked through his ball game at recess. I asked why she hadn't told the playground aide and she said she didn't want to tattle. I guess today, in a large group game, the boy was rushing to "be first" and another boy pushed him out of the way. Liz took the opportunity to follow suit and also push the kid. NOT alright, but I know where she was coming from. The mean kid took off to the nurse to have his wounds (a freaking red mark only) cared for and to tell on Liz. It is not at all okay that she used her hands. I know she was so angry and disgusted at the kid that when she saw an opportunity to use a game as a way to lash out at him she took it, but she cannot touch others and I was shocked that she actually did.
Anyway, Lori, already prompted by our earlier conversations about Liz, heard news of this and dropped by with the punching bag! She was so great as she called the kids to the car and in a pow-wow, talked to them on their level. "I know you all are going through a lot lately and I know it can make you feel angry and just want to hit something. So, I am leaving this punching bag with you and when you feel like hitting something or someone you just come outside and KNOCK THE HECK OUT OF THIS!!!"
Isn't that great? You should have seen the look on the girls' faces!
Friends have brought us meals, have sent notes, listened to me as I have vented... and given us something to beat the crap out of.
Thank you, Lori!

Monday, February 7, 2011


"I've got the joy, joy, joy, joy down in my heart!"
Remember this song? Taylor Grace lives this song! My children are charismatic, fun, animated and joyful.... but Taylor takes it to another level. She lives her life in song and dance and is just amazing. You can't teach this stuff, it is just part of her very being. What a blessing she is to our family, to all who know her!
I woke feeling content and joyful myself today. After dropping the kids at school, I came home to chores and paperwork.... and I could have easily gotten lost in thought and the tedious tasks, but after having Taylor and Makenzie dropped here (I watch them while my sister works on Mondays), my mood only got better. Grateful for a morning and afternoon spent feeling joyful with such joyful little girls!

Friday, February 4, 2011

De'ja' vu

One week. One week today until we hear the results of Elizabeth's second bone marrow aspiration. A week is not long at all. A week is a lifetime to wait. A whole week.

In the past few weeks, I have had so many occurances of deja vu. So many in fact that it feels odd and I have tried to piece them together. Do they even go together?
And, if you don't already think I am losing my mind after my last candid post about my sadness, this will really make you think I'm nuts..... today, after my last deja vu moment, I tried so hard to remember whatever it is that jogs your mind, your memory, in moments of deja vu. I tried to remember, so to speak, if I'd "seen" this before...if I know what is going to happen to Liz. I'm a planner, and I just need to now. Sooner rather than later would be helpful. Does that make sense or just sound insane?
It sounds insane writing it, reading it. I will quit while I am ahead.

I feel less sad today than I did the last two days over news of Elizabeth's gi condition and the surgery that will be neccessary. Just as there are stages of grief for those who go through loss, for me there are stages of worry. Sadness, frustration, anger, disbelief, mourning....gosh, it sounds the same as grief now that I write it down. In any case, I am back in what my sister calls my "game mode." That describes it perfectly, actually. Not sure how you therapists would feel about that phrase being used to describe feelings, but it sums it up. I am back in game mode, that is to say that I am in the "bring it on, let's do this, it is what it is, stage. It could change tomorrow, it could change tonight, but for now I am not so sad. Plus, I think her bone marrow results will show it has recovered at least a bit.

So, we'll wait this long week out. We'll pray and wait. And, hopefully, any new deja vu moments will bring visions of handsome cowboys...or something close to that! : )

Starbucks for my Lulu

Today Liz looks much better than she did yesterday! She has bags and dark circles under her eyes and looks pale, but she definitely looks better. Still, for the first time in years, she offered on her own to stay home from school. She said she was too tired and felt "funny." I took her to Starbucks as a morning treat (Walter and I don't drink coffee -I know some of you must be gasping- and so Starbucks is not a common stop for our family) and let her choose a pricey drink that I knew she would not like at all. I was right, but of course she didn't admit it.

Thursday, February 3, 2011

I will choose to say...

{Liz waiting in pre-op, playing a mean game of Wii. Second photo is as she was sleeping off the anesthesia. Isn't she just beautiful?}

I do not even want to write this post. For the purpose of this journal, I will.
Yesterday, what should have been a simple procedure for Elizabeth ended up bringing a devastating finding. That sounds dramatic, even to me. But it is the only word I can use to describe it, because, well, we are devastated. Many other things in life could have happened yesterday that may seem "devastating",for goodness sake, the results of the bone marrow aspiration could be devastating. But yesterday and today, the word devastating is all I have for this.
As the doctor sat with us and, showing us pictures of inside Liz's esophagus and stomach, he said "I am so, so sorry to tell you the para-esophageal hernia (part of her stomach slips into her chest cavity, alongside the esophagus, through a hernia (a hole)) is back. I am so sorry I could not fix her today." And he was. He was sad and sorry.
This type of hernia is uncomfortable and painful and difficult. But, on another person, it would be a relatively simple fix. A painful fix, due to the surgery that is needed to repair it, but pretty simple.
This is not the case with our Liz. SO not the case.
This hernia has already been fixed 3 times before. 3 freaking times! The surgeon has used Teflon and every technique known to fix it. Still, it returns.
Liz has had so many surgeries to her stomach and esophagus that she has so much scar tissue that surgery is more than difficult. In fact, during a previous surgery, her vagus nerves were accidentally cut- this was always a possibility from about the 3rd surgery on, as she has so much scar tissue, even the best of surgeons ran the risk of cutting the nerves rather than through scar tissue. Walter and I knew this was a possibility each time. When the vagus nerves are cut, the surgeon must then perform a pyloraplasty, which has led to her having dumping syndrome. The scar tissue also makes it impossible for her to have a laparoscopy (surgery done through tiny holes, where cameras and instruments are placed to perform surgery). Surgery #5 was done "open" meaning she was cut from sternum to belly so that the surgeons had more of a clear view/field to work in. Any future surgery must also be done open. The last surgery was only to last about 2-3 hours. It ended up running 6 1/2 hours. The recovery is awful. Anyway, you can get a sense of how much scar tissue she has and why, on top of all other risks, that makes her a complicated case.
You can see why the findings yesterday are, to us, devastating.
I can recall a handful of times when I have looked into my husbands eyes and seen pain, total pain, and total defeat. Yesterday was one of those times.
So, the gastroenterologist has spoken to the surgeon. I will speak with them next week. For now, she'll go on more of a soft diet and will have to eat much smaller amounts.

The second thing done on the OR yesterday was another bone marrow aspiration. The results of this will hopefully give us more of a picture of what is going on with her blood. We will have to wait a long, long week for those results.
She has had much more pain after this BMA than the last one she had. I feel sorry for her. She had blood drawn yesterday and the nurse called me late yesterday to tell me that her white count, platelets and ANC (neutrophil count) were the lowest they've been in months. Her platelets are low enough that she cannot have Motrin, which would help her hip pain, from the aspiration, the most. Bummer.

Devastation, ever-hopefulness, frustration and sadness. That's what yesterday brought us. BUT....
One of my favorite books on the Bible is Job. (Do you know Job? I will write about why I love this book so much another time). One of my favorite songs is based on a verse in Job (Job 1: 21)and I will never stop believing the words:

{Blessed be Your name
When the sun's shining down on me
When the world's all as 'it should be'
Blessed be Your name
Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name
Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be Your name....
You give and take away,
You give and take away
My heart will choose to say
Blessed be Your name}

NO MATTER WHAT, this is what I will choose to say.

Not. At. All

I am not Supermom. Not. At. All. Not even close.
What I am, is barely hanging on.
That is my truth.

What you don't know (well, a few of you sadly do) is that when you have a "sick kid," you have no time to do anything other than go through the motions, check off things on your to-do list and hang on for dear life. You would all do exactly as I am doing.

If you could see me in my weak moments (especially the car or shower); if my thoughts were visible, you would not call me brave or super. Not at all.

Last night I told Walter "I am going to crack. I don't know when, but I am just telling you that I am." What was he supposed to say to that?! Anything he could have said would have been wrong in my eyes. Just to clarify, and so none of you stage an intervention or check me into the hospital, when I say "crack" I mean I am going to cry. I have yet to cry over what we heard yesterday. I can feel the tears, I have even stopped them a few times..... like when Liz had the window down in the car and had her head placed against the wind as I drove, begging me to drive faster and squealing that it was the best feeling ever. She looked so happy and care free. Or when she woke from surgery yesterday and asked if she was "fixed now." I couldn't even answer her.

I can't cry though. Not yet, I won't let myself. I am afraid if I start, I won't be able to stop.

I can lean on my faith and scripture and I can feel the support of friends. I will appear to be brave for Elizabeth and we will get through this.
But I am not Supermom. Not. At. All.

Tuesday, February 1, 2011

I should be used to this

{ This photo was taken in November of 2009, at Cedars Sinai. Liz wore her "Hope" shirt (of course bedazzled with a crown) to show how brave she was. I remember this day so vividly, as we were at a hospital that was new to us and meeting with new doctors. On this day, Liz was meeting with an anesthesiologist who specializes in pain management. We were hoping that injections would help alleviate some abdominal pain she was having, but that was not the case and she ended up having surgery #6 two months later}

I should be used to this by now. Elizabeth has had more procedures than I can count that required anesthesia and the six operations. I should be used to the nerves, the feelings of loss of control, the worry. I should be used to the fact that come surgery time, my faith and reasoning will kick in and I will have a wave of strength and calm take over me. Nine years into this, I should be used to this.
But I am not.

I know that in the morning, I will wake my sleeping beauty and carry her to the car as she groans "is it time?" I will hush her back to sleep as we make the drive to the hospital. I will listen to Liz object to having to wear "such an ugly thing!" as she puts on the hospital gown. I will carry her into pre-op and sing her songs in a whisper as nurses hover, prepping her for the operating room. I will meet with her doctor, who for the millionth time (not quite, but close. At least it feels close) will put his arm around me (God bless him) and say he's sorry we're at this point again, and promise to take care of her. And I will know he means it with every ounce of his being. I will carry her into the cold operating room and know that as a dozen people talk in unison to her, she hears nothing except the words of her mommy, promising all will be well. I will watch the anesthesia mask go over her face and her eyes will start to tear and she will cry out for me to not leave her, to make "them" stop. She will ask me if this is the last time she has to do this, and I will be able to only answer "I pray so." And then she will fade to sleep and I will follow a young tech. out of the OR and make the long walk to the waiting room... digging deeper within than I can ever describe, so as not to run back into the OR just to hold her hand. Just to make sure that the doctor keeps his promise.

I will sit for the next 2 to 3 hours visualizing each step the doctors are taking, praying for their hands and skill. Praying, praying, praying.
Praying for Elizabeth to be kept safe and for wisdom for the doctors. Praying for comfort for my baby and peace for us. I will pray that her first procedure went well and she will be able to eat again without pain.
And this time, different than all of the other times we've been through this, I will pray that her bone marrow will have recovered and that this will all just be over.

When Liz wakes, she will smile and ask if it is over, and again ask if she ever has to do this again. I will smile and say, again, I pray it is all over.

I should be used to this by now, but I am not.