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

Monday, September 17, 2012


"I don't know how to do this." I must have said that to myself a dozen times today.
I just don't know how to manage everything. I am trying so hard to make things normal in this home, in our routine, and in our family, but this is not normal.
I am in tears tonight as I feel a huge weight in terms of Elizabeth. We are trying to keep her in school, but it isn't working very well. I feel a tug to pull her and do home and hospital teaching like we did last year, but I know how badly she wants to be in school. She thrives on the social aspect of school and she truly likes being in the class room. The fact that she has a twin sister going off to school each day adds a whole level of complexity.
Still, it is hard for Liz to keep up with everything when she misses a day. She was put in all accelerated classes, except for math, and so she has even more work than she would otherwise. She is starting to feel the stress of it all and that is not a good thing. Between the doctor's appointments, hospital stays and days she is home not feeling well it adds up to being just too much. I don't know how to do this.
My gut tells me to pull her and help her recover and get strong, but then I would be taking away the wonderful, positive effect school has on her mentally; and honestly, her mental health is as important to me as her physical health.
Such a difficult decision. I was hoping she would have more time until we would have to make the decision to pull her or not. Once flu season hits, it will be telling for Liz. Either her body will be able to fight all the infections and viruses, or it won't. Now though, she isn't recovering as well from the surgery for the GTube as we'd hoped, and she isn't doing well in other ways.

Her stoma (the opening where her Gtube button is) isn't healing as quickly as it should be and now she has developed pussing, bleeding and granulation. Gross.
Last night and today she had an elevated temp and we are hoping it isn't related to the stoma which would show signs of infection.
She had a bloody nose four times Saturday, and each one lasted at least 20 minutes. This makes us think her platelets are lower than her usual low counts. We are off to the doctor again tomorrow.

Today I have felt like I am not the one who should be caring for Liz; like I am not the right person to help her get well. I know that this is just my fatigue and frustration talking, but it has been such a feeling of weakness.
In perfect timing, I got a boost tonight. Elizabeth showed me part of an essay she wrote for an assignment. It touched me in a way only my child's pure and loving heart could and I took her written words as an answer to prayer.
"My mom is the person I admire the most because she is patient, caring, loving and hardworking. Every single day my mom never stops."
I don't know how to do all of  "this", but I do know that I have to keep going because little eyes are watching, and I have a lot to live up to.

Wednesday, September 12, 2012

If Only

I LOVE this song. Along with liking the song so much, the message goes along with much of what I have been feeling lately.
I will admit that I have been struggling with "what" I am; what my role is in this life. Before I go on, I will remind you that I consider it a privelege to be able to take care of my three children. I also consider the messy, difficult, taxing role of caring for Elizabeth a huge privilege!
Having said that, candidly I will also share that at times I feel "if only." If only I could be contributing more to the family or if only I could work, then we would be able to take vacations, buy luxury items, not stress so much about medical bills.
If only Liz wasn't sick. If only my husband didn't work so very hard and yet we are in a constant state of drowning in medical debt. If only life had gone according to my plans. If only I knew that things would turn out alright in the ways we want. So many if only's.
We all have them, don't we?

Last night, as Walter and I had some quiet time to talk (if you have a mental picture of us cuddled and talking in whispers or sharing a glass of wine and having deep conversation, throw that out. I was watering when he drove up from being at work and we stole a few minutes alone to talk as I threatened to hose-down any child that got in the way of our conversation : )  ), I told him
"This is what I am supposed to be doing. I am supposed to be taking care of Jackson and Kate. And, I am meant to take care of Elizabeth during this time - nurse her back to health, get her through this horrible time; help her get through school, help her to get strong- so that she can be the best person she can be when she is older. So that she can be the person she is meant to be."

Life can rock us to the core- all of us. It can try and strip away security, comfort, health, plans.....
but if we try hard, if I try hard, and stop focusing on the "if only's", it won't take away who I am meant to be. Which for now may be a struggling, tired mom. That is alright, because I am rich in so many other ways and I know that I am doing exactly what I should be right now; exactly what I am meant to be.

{Some people are so poor all they have is money.
Diamonds, some people waste their life counting their thousands.
They can't afford what we've got, not even the kings.
I found the world in you.
Your arms around me are worth more than a kingdom.
The trust that we feel, the kings never felt that. They can't afford this; this is priceless.
They can't afford what we've got, not even the kings

Wednesday, September 5, 2012

Don't Say First Day

Elizabeth was discharged from the hospital late Monday afternoon. Yay! We are always so happy to come home to our loves and to be away from the hospital. She'll follow up with all of her specialists in the next two weeks and she'll get blood counts again soon to make sure her counts have come up some.
Liz is doing pretty well. She is having some bleeding from her stoma, so we will go to the doctor tomorrow to get it looked at. Last night she woke up in pain, but she never lets her pain get in the way of what she wants to do........
which today means attempting her first day of middle school! She is half crazy, half stubbornly resilient, and she insisted on going to school just like everyone else. I knew I needed to let her attempt the day because we have no idea what this year will bring. If she is not able to fight infections or if she is too sick, she'll be forced to stay home again this year like she did all of last year.
I have been crying for the last two hours since I dropped off the kids at school because I am so worried about Liz. We have been together, literally, all of the time for over a year. My gut says she is not ready for school today as she is still recovering, her counts aren't great, and her stamina isn't there, but for her emotional and mental well being we had to let her try.
Jackson and Kaitlin were happy to walk into school this morning. How in the world can I have children of my own who are old enough for middle school?! It just seems impossible. I pray the girls have a great experience and make lifelong friends in these middle school years, just as I did.
Jackson started Kindergarten! How sad that for the first time in seven years, I will have an empty home during the day now that all three are in school.

Here's to a wonderful, happy year of learning and firsts. As Travis said when he was little, and we continue to say now, "Don't say first day!"

First day of Kindergarten and first day of 6th grade.
Jackson- 6  Liz and Kate-11

Look how they've grown. This was last year.

My beautiful, hard working, pleasing, kind Kate.

Jackson's teacher is amazing (!!!) and happens to be our neighbor,
He is hilarious and told us "I don't think having my neighbor for my teacher is such a good idea".
He is totally prepared for Kinder and is going to have a great year!

My shadow for the last year is attempting to leave me and have the normalcy of
school that she deserves. She is an example to us all of never making excuses, practicing mind-over-matter,
 and believing that strength comes from within.

The girls have always been in class together. This year they will separate for the first time.

Jackson and Taylor are at  the same school and in the same class!
I just kept telling him "Do not hit your cousin at school!!!"

Sunday, September 2, 2012


Lizzie is doing well! She has had some bumps over the last two days, so she is still in the hospital, but overall we think she is doing well.
I could go over all the medical talk and things that have hindered her going home, but I will keep this post light and blog with photos of the positives.....

Thursday night Liz started with a distended belly. Surgery was called in around 10:00pm, and it made for another long night
She finally was able to get some rest and looked peaceful.

Liz has a history of post-op pneumonia, so she worked hard this time to expand her lungs.

Walking helps keep her lungs healthy, too.

Liz has wanted privacy this hospital stay, and I have to respect that and restrict visitors. We did
enjoy having Alyssa, Juliette and Makayla here yesterday morning, though. Many of you know of Alyssa and how she was
beyond very sick for a long time. Now look at her- she is amazing!! She's also sassy, hilarious, and a great cuddler.

Liz graduated to jello this morning! Finally! The poor thing has to gain back the weight she's lost this week( she lost a pound overnight, alone), on top of what she needs to gain overall. Thankfully, the g-tube will help her do that!

Lizzie's friend Maryam is inpatient right now, too. She is in the room next door and those cuties knock in code on the wall that is behind each of their beds. This knock was to ask Maryam to escape the Unit and walk outside....

........look at them peering and planning their escape girls, run!! Karen (Maryam's mom) and I couldn't stop laughing at our girls and their "old lady" strolls as they
pushed their poles and made a break for freedom.

Ahhhh, fresh air for the first time in a week and a visit to the koi pond.

Liz is doing a great job in here. It was disappointing to have setbacks an to still be inpatient, but I am greatful to know that we are over the most difficult parts of this stay and headed home soon.
Ooooo.... one more positive- I have quit soda while in here!! It was seriously a detox, and my head hates me for it, but I figured if Liz can endure her suffering, surely I can motivate myself to give up Coke. I did it, and I am not going back. Yay!