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Friday, July 25, 2014

I’m sorry it’s been so long since I’ve updated. We went for our monthly exam in LA and our doctor found that Owen’s tumor is responding very well to chemo (YAY!). So well, in fact, that Owen might be done with chemo after this next cycle. We won’t know for sure until we return to LA in August, but it’s a possibility.

Owen is having another round of chemotherapy this week (Tuesday and Wednesday). I’ve been fortunate that up to this point, I’ve always had someone to go with me on chemo day(s). That won’t be the case this week, so I’d appreciate some extra juju that everything goes smoothly :)

I’ve been feeling really good the past few weeks. I wrote about it briefly, but I’ve had some times in the past month where I’ve been really down about the twins. It’s normal for grief to hit me harder at some times than others, but it’s exhausting when it does. I’ve been packing (we’re moving soon) and as I’ve gone through things, I’ve had some break-down moments when I unexpectedly found a card given to us after their death, scrapbooks I compiled, etc. I think allowing myself to break down has helped me overall though. After crying, I feel more refreshed and able to move on with my day unburdened. I’m going to work on allowing myself to feel what I’m feeling in the moment and not feeling guilty about it.

I’m also working on being less stressed in general. I have two mottos right now, “I have bigger things to worry about.” and “it is what it is.” I’m trying to have perspective as I go about my day. I’m also trying to be more positive about myself. I find that some days I think about myself as a “bad mother” or “bad wife” because I didn’t accomplish all I wanted to accomplish, because I didn’t wake up on time to make a hot breakfast, because Owen watched too much Sesame Street, etc. But I think giving myself those messages does more harm than good. The important thing is that I’m trying. Some extra Sesame Street on a day that I’m fried and trying to get housework done isn’t going to hurt Owen. Likewise, Jacob having toast or a bagel for breakfast one morning isn’t going to make him have a bad day. It’s all about balance and doing whatever we need to do to get us all to the end of the day happy, loved, and well cared for.

I’ve noticed as I feed myself these positive messages, I’m happier. I’m becoming more and more content with my life. I’m enjoying the time with my family more. And I’m worrying less about things that really don’t matter that much.

Thursday, July 10, 2014

I was cleaning out our closet. Trying to de-junk and add to the “yard sale” pile. I pulled down the box of Isaac and Porter’s things and for the first time since we moved last year, I opened it up. As I pulled out their blankets, the journal I’d written to them while I was pregnant, the molds of Isaac’s hands and feet, and the photographs I wanted to bawl. I wanted to curl up in a heap on the floor and sob or scream at the universe for taking away my babies. 

But I didn’t. I packed everything back up. More quickly than I’d intended to and put the box away. It’s just too hard to look at it. I have framed pictures of I&P. Pictures that were hanging on our wall in our last apartment. Pictures I planned to hang along side the pictures of our living children (at that time I planned on having more than one living child). Now? I’m not sure I can do it. When we move, I may just hang a picture of the three of us and call it good. I’m not sure I can emotionally handle seeing I&P’s pictures every day.

I never thought I would feel that way. That’d it’d be harder to see their pictures than to not.

Grief is such an interesting monster. It has taken on so many forms in the past 2 1/2 years. I’ve had times when I was happy and was surprised. And I’ve had times when I’ve struggled and that surprised me too. It’s an ever consuming roller coaster of emotions. 

Not long after I’d put the box back, Owen woke up from his nap. His sweet smile and insistence on bringing his blankie and pacifier downstairs cheered up my heart. He’s so good. Even when he’s not feeling well (chemo is hitting him), he makes me laugh.

Sunday, July 6, 2014

church.

My mom watched Owen this morning so that Jacob and I could go to Sacrament Meeting. We haven’t been in a few weeks and I didn’t realize how much I missed it until I was sitting in the meeting. Today is the first Sunday of the month, so it’s fast and testimony meeting. Members get up and bear their testimonies of Christ, of the gospel, etc. It was a spirit filled meeting and I desperately needed it today.

It made me think about ways that I can bring the spirit into our home more. Ways I can build my testimony. Ways I can draw closer to my Savior and my Heavenly Father.

Attend the temple. My recommend is expired and I’ve been lazy in getting it renewed. I’m making it a goal to set up the appointments and get that taken care of this week. I’m also making it a goal to attend the temple. Even if we have to take turns so one of us can stay with Owen.

More church audio. I like to have noise during the day. Owen and I often listen to music or audio books. I am going to put on church music more often- hymns and songs from the Children’s Song Book, and the book of mormon as audio. Church music especially has the power to bring the spirit into our home and it tends to make me happier and more at peace.

Read my scriptures more. This is something I simply need to do. Reading the scriptures on a regular basis helps me to be guided and more at peace with my circumstances. I need to sit and read more and turn off all of the distractions when I do.

Those are my three goals. I think following them will help me and our family have the spirit more. I’m so grateful for our families. Without their help, we would not be able to come through things unscathed. We are so very blessed.

Friday, July 4, 2014

triggers.

It was a review on Amazon. I was looking at different dolls. Someday I want to get Owen a doll that is anatomically correct and a boy (he already has a girl doll). I always read the reviews. It’s the fastest way to find out if it’s a product I’m interested in or not. Usually they’re super helpful. Sometimes people are dumb (especially about toys that anatomically correct). Today I read a review that talked about the size of the doll (14 inches) and said that a premie that size wouldn’t look “real” because they’d be too young.

A 14 inch baby wouldn’t look real?

Isaac was 14 inches.

Isaac was a gorgeous, 14 inch, 1 lb 14 oz. baby.

My perfect, beautiful, baby.

He was real.

After reading the review. I went to my iPhoto and flipped through the pictures of that day…

The worst day of my life.

I wish it was different. I’ve faced some hard things. I’m facing some hard things. But if I could change one, Isaac and Porter would be here. I miss them desperately. Most of the time I push those feelings aside, to the back of my mind. I don’t face them on a regular basis because they hurt too much. When I actually sit down and think about the fact that two of my children are dead, I want to die too. Those feelings are exhausting and sad. They hurt. The fact that they are dead, really really hurts. I miss them.

It’s a stupid little thing, but the fact that the commenter said a premie that size wouldn’t look real pissed me off.

I miss my boys.

Thursday, July 3, 2014

Today we had a “quick” appointment. Just a set of vitals and a shot for Owen. The pharmacy was being really slow today though so we ended up waiting in clinic for two hours before his shot was sent upstairs.

After the shot, we hit the cafeteria to get some lunch. It wasn’t until we were half way home, exhausted, that I realized I’d forgotten Jacob had a list of places he wanted to visit in SLC. I honestly think he was too tired to even think of it, but I felt bad that I’d forgotten. We had also planned to go out to dinner to celebrate him getting a new job, but we put it off. Jacob and Owen fell asleep and for most of the drive I thought about cancer and how it can so easily consume our life. We were at the hospital every day this week for one thing or another. I ate more meals there than I did in my own home.

We’ve been very blessed through this journey. Honestly Owen has done remarkably well so far. But it’s still hard. It’s exhausting, both mentally and physically. If you email, call, text, or contact me and I don’t get back to you within a reasonable time frame, cut me some slack. I’m a little overwhelmed right now.

I’m trying really hard to not be. I just have to get my feet under me a little bit. Switching to chemo mode has been tougher this time around.

chemo and such.

Tuesday and Wednesday were spent at the hospital. Owen is getting three different chemo meds, the first day he gets all three and the second day he gets two. He did very well with everything. It’s a challenge to have a busy toddler hooked up to an IV pole. The first day, he ran around and played. The second day he didn’t feel as good and wanted to be held and cuddled more, so we used the iPad and watched some movies. The hardest part about the second day was that the IV was bugging him. His skin around it was irritated and if he’d notice it he’d try to yank it out (ouch!). So I spent a lot of time distracting him from the tubes coming out of his arm.

Yesterday (day #2) was tough for me. Owen cried every time they had to access his IV (which was a lot because it kept kinking) and he didn’t want me to set him down or step away from him. I cuddled him as much as possible, but when I had to leave to use the bathroom or get him food it was upsetting for him and made me feel really bad. Our nurse also wasn’t as good as the nurse on day #1 and that was hard. I felt like she was inexperienced or timid and that made my stress levels a lot higher.

Today he has to get a shot to boost his white blood cells, but other than that we’re free for the weekend. We’re hoping that he continues to feel okay. We’re keeping up on his nausea meds and watching him pretty closely.

Sorry this is short. I didn’t have a free moment to blog while at the hospital and by the time we got home the past two days, I was too tired to do anything. I’ll write more later and post some pictures.

Friday, June 27, 2014

marching on.

I’m feeling better this afternoon. I finally gave up on getting the house spotless today and took a nap. After I woke up, my in-laws stopped by and took us to get some dinner. Food and conversation that had nothing to do with cancer was very much needed. Once again, I am grateful for our wonderful families and all that they do for us.

Being sad is exhausting. It takes more energy than accepting things and moving forward. So I’m not sad anymore today. I will get everything done and I’ll be ready for the week when it hits.

We have tickets to LA for next month, so that’s taken care of. We’ll probably end up doing a mix of flying and driving depending on the month and who is able to come with me. Next month we’ll be on our own, but we’ve done that before and it’ll be fine. Because of the flight times, we’ll end up having most of the day Friday before we fly out. I’ve been wanting to go to the Braille Institute which is down the street from the hospital. I think we’ll check it out in July since we’ll have that day. I’ll probably do some research and see if there is somewhere else that would be fun to visit too.

It’s been a few months since we did chemo, so I have a lot of questions for the doctors. I’m glad that we’re sitting down with them Monday to discuss everything before we start the process on Tuesday.

Owen is the cutest little boy. He’s had a rough few days, so he’s less patient than normal but he’s making me laugh tonight. Jacob handed him a cookie and instead of taking it, Owen just opened up his mouth and bit down before turning away. Easier than hands I suppose. He’s silly and we’re so lucky to have him.