Back to the blogging world…

The blogging world is such a funny place. For me, its not so much about my blog being read as it is me putting words to my internal world. I’ve known for quite some time that I must write to stay emotionally healthy, otherwise too much stays bottled up inside. I think best when I am writing. I process emotion when I write. When I write I finally connect with all that is on the inside.

I can’t promise I will be great about blogging often, but I know I have a lot to say, a lot to think about and a lot to feel, so I will need to be here.

It feels good to be back!

Posted from Naomi’s phone!

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Happy Birthday Dad

Today my mom and I went to lunch and then to get flowers and balloons to put at my Dad’s grave.  His real headstone arrived on Friday, and its beautiful.  Finally, his grave doesn’t look like a “make-shift” grave.  My dad has a place to rest and a headstone that gives him significance and dignity.

While at his grave, and even thinking about having been there, I have flashes of movie scenes in my head of all the characters I’ve seen visiting loved ones’ graves.  I don’t know how I became one of those characters.  I remember at his funeral thinking, “How did we get to be in a lead car?  Why are we sitting in the green covered chairs?”  It felt so impossible to connect with at the time…like I was living someone else’s life. 

I’ve been on auto pilot for a long time, taking care of my girls, helping with all the details, supporting my mom…tuning out.  Now, as I think about his illness, our last year with him, our last week with him, I feel a little like the wind got knocked out of me.  One minute I was living a life of normalcy and predictability and the next I am sitting by a grave stone in a cemetary…

How did we get here?

Christmas/Harvest Sale

My mom is having a HUGE holiday sale with gorgeous Christmas and Harvest decor and furnishings. She’s the best holiday stop in town! 🙂 She’ll be open Thursday, Friday and Saturday (today-Sat), from 10-5. The address again is 1246 2nd Avenue SE, Cedar Rapids. Come and shop!

Wendy Jans Benefit…Amazing!

ah, sigh………………

This surgery recovery thing has its peaks and its valleys, that’s for sure. We had a very full day yesterday and evening, which I’ll talk about in a bit (and yes Ann, share pictures! :), but this was also Travis’ first day back to work since my surgery. I think he worked harder over these two weeks, with the kids, the house, extra tasks, than I’ve ever worked in any two week period of my life. He gets so excited about times when he gets the kids all to himself, because he normally gets so little time with them. 2nd shift means that he sees them before school and then not again until the next morning before school. So, he was pumped about his two weeks off with them! And he was fantastic! But I could also tell that he was ready for a changing of the guard. And I don’t blame him. The girls are a lot of work, especially when you’re not used to shouldering it all yourself.

So, Travis went back to work today and I resumed my normal schedule of running the show from 2pm till bedtime. Madeline gets dropped off at noon, Emma was home sick today, and Garmai is out just before 4pm. Even though I was exhausted from being on my feet so much yesterday, every day I feel considerably better. Earlier today I felt really good. However, when lights out came tonight, if I wasn’t so pooped, I think I’d done a jig outside their bedroom door. I just wanted to drop dead, and today they did amazing too! No major explosions, no fights, and my mom even brought over some leftovers from meals brought to them for the kids and I to eat. God has so perfectly timed the phone calls from my mom when I hear, “Hun, would your girls be able to eat…?” LOVE those words! So here I am, resting in bed with complete silence in the house! Ahhhhh………

My mom said that someone at the benefit concert last night commented on how well behaved our girls are, and she said there is hardly a time when others are around them that she doesn’t hear that at least once. And I have to say I was quite proud of them! That was a long evening for small kids. I wanted to use that comment to encourage the girls and so I told them how fantastic they did, to which my oldest daughter responded with, “Why are we so good at other places and so bad at home?” (I had to laugh, and then I got kind of sad.) I just said, “Honey, you guys aren’t ‘bad’ at home. Its always hardest to make good choices when we’re home with our families and we let our guards down. But you guys did great tonight, so enjoy that! Daddy and I are proud of you.” And we were! For those of you who got to meet our little social butterfly (at one point when I saw her talking to someone she’d never met before, and I commented, “And there’s our 5 year old Madeline, working the crowd!”), thank you for making whatever kind of conversation it was she was making! 🙂

Just a side note: Many of you have asked when I will be able to tell whether the surgery has helped my headaches. I’m guessing that I won’t have a good idea for a couple of months yet. I’ve just discontinued one med that I was on before the surgery and am waiting another few weeks before discontinuing the other med. Once I get a month or so past that I’ll be able to begin assessing the impact the surgery has had. Thank you for your prayers. The surgery went great and my recovery, although somewhat slower than I had hoped, hasn’t been bad at all.

So, on to an update on mom and dad, since that is the purpose of these emails! 🙂 Last time I updated we had just found out that his tumor was regrowing and he was prepared to begin his new chemo treatment. They’d decided against the steroid until there was more evidence of significant swelling, because of the agitation it causes. Well, he tolerated the chemo really well, without significant side effects, but by the time he went in to the office for that treatment he was experiencing such confusion, wasn’t understanding things they were asking him to do at the office, and had periods of being unresponsive to direct statements and questions. He just stared, as if in another world. So, they added the steroid to his chemo drip on the spot and by the next day we already saw improvement.

Agitation is a definite issue (from the med), appearing similar to anger that an early Alzheimer’s patient might experience. His confusion might cause him to butter his meat instead of his bread, or like today, try to microwave his fruit salad. For those that are concerned, my mom was there, as she always is, able to give him freedom to do as much as he can while still playing interference when he makes mistakes or gets confused. And, he quickly tires when there is too much going on around him…which is why we were all amazed that he stayed for the whole concert last night. I think what kept him there was all of you that came. My mom said, “It was obvious that he was really touched by the entire evening. He was exhausted by the end but did not want to leave early.” So, we were very glad for him that it was meaningful, more than overwhelming. My mom said she thought God gave him “added grace” for the evening. His growing confusion always increases his inability to be verbal. I think it would be fairly accurate to say that he might get out 10-20 short sentences in any given day, with some yes’ and no’s thrown in. He can’t finish every sentence he begins, but sometimes just needs extra time to find the words.

From here on out, he will receive the chemo treatments every other week, and he will take the steroid in as low a dose as is effective in controlling any swelling caused by the tumor.

My mom is getting through her days, sometimes up against some pretty intense feelings of depression and grief, and other days her busyness serves as distraction from the nearing inevitable and growing chasm she feels inside. She’s exhausted most of the time, and yet every day doing as much as she is able for the business, their personal life, for him, and around the house. I think for her as well, it is truly only by the grace of God and your all’s prayers and assistance, that she has not totally collapsed by this point. This has been one of those times in her life, where I know she is feeling (daily), “Lord, this is too much. I can’t keep doing this.” and yet she does, each day.

We’re going ahead with plans to visit the North Shore again over Thanksgiving, barring any changes in my dad’s stability. I don’t quite know how to feel about that trip. We know our time with my dad is getting short, so these “lasts” feel like on one hand I don’t want anything to do with them, on the other hand, I am thankful for each experience we get. You know the end is coming, but sometimes it makes me physically sick to connect with the reality. I think about walking in the door at my parent’s house and seeing just my mom…I can’t even picture how my family fits together or what we will be like without my dad. Mark and Rebekah’s kids won’t know him or have any memory of him. My kids have had some, but not enough. I always pictured my girls getting to their teens, and when they were really mad at us or even ran away from home, knowing they could go to grandpa (and of course, grandma), and be able to rest and talk, about things they might not want to talk to us about. I’ve just always known he would be great in that stage of their lives. Even a couple of months ago, not able to really say much, if Emma was having a hard time at their house (or if we’d had to discipline her), I would see him walk over to her and hold out his hand, and have her just sit on his lap…just to say, “Grandpa loves you, honey.” Their hearts needed so much more of him. And yet I know from my own life that none of us have received everything we have needed from those that could give it. And I know how amazing God is at using those empty places as places where we find Him and His love for us.  That is the only thing I rest in.

The benefit concert was just, beyond words, a blessing for all of us. I had no comprehension the number of people that would come. Java Creek was packed! My mom said afterwards, “I just don’t know how to even take in everyone coming and Wendy doing this for us. People’s love and generosity has just been unending.” We want you all to know how much we love you! And like my brother said, “Without you our family would be in such a different place right now.” So, thank you to Wendy and Eric Jans, for coming all this way to do this. Joshua’s friend Miguel played as well, and we heard over and over how amazing they both were and how thankful people were for an event like this! We would never have been able to offer my mom and dad something like this. So thank you!

Football Saturday

Go Notre Dame!

Go Notre Dame!

Go Notre Dame!

A BAD IDEA!!!  I twisted my upper body very slightly to try and crack my lower back and now I’m in just a wee bit of pain.  Don’t think my lower abdomen was quite ready that.

Travis and I came over to my parents house with the kids to watch some football, which so far has involved happy screams and shouts!  A good day for Iowa and we’re hoping Notre Dame will follow suit.  Josh was decked out in Iowa gear, as was my dad, but when the Notre Dame coverage began Josh went down to his room and brought up t-shirts, sweatshirts, jerseys and hats for all of us to wear.  Madeline didn’t get the t-shirt she wanted, so we couldn’t get her in the picture I’ll attach here, but she eventually came around.

I’m recovering from surgery pretty well.  As long as I stay on top of my pain pills I can move around and shower without much help.  Without the pain pills I’m hurtin’ pretty bad.  The hardest thing for me to do right now is sit up from a laying position in bed.  You use total abdominal muscles to sit up from a flat position.  But so far I’ve had no problems in my recovery at all.  Travis has been super hubby/daddy!  He has taken on all the responsibility at home without any complaint and we’re both very hopeful that we’ll see the results we were hoping for from this surgery.

In my last update on dad, they were going to hold off on the steroid, because it makes him so agitated, until the regrowth became more severe.  That however changed the very next day when they began his new chemotherapy.  In the doctor’s office he became extremely confused and unresponsive, so they added Decadron to his IV and got him started instantly.  If the swelling and regrowth increased as fast this time as it did last time, without the Decadron I think we could have lost him this week or next.  But within 24-48 hours of receiving the steroid, he had improved drastically, so we don’t expect anything big in next few weeks. 

This kind of tumor, as it grows, needs blood in order to grow, so as it grows it creates just a mass of blood vessels designed to keep feeding the tumor, and consequently the vessels get more unstable.  When they took his first tumor out they described it as a mangled mess of irregular blood vessels.  The chemo that he is on now is designed to slow down blood flow to the tumor which will keep it from growing as fast as it would otherwise.  But no one can give us a true picture of how much longer it will give my dad.  On average it extends life 4 months.  We’re going to attempt another trip to the North Shore over Thanksgiving, as long as my dad is stable enough to travel.  He is looking forward to that trip, as are the rest of us.

Not a lot more to report.  I’ll update when I have more info.

Just a little surgery

Well, in less than a week I will officially join the “uterus-free” club!  I get a few butterflies in my stomach thinking about it, but on Tuesday I will have a total hysterectomy!  Its been a decision that’s been in the wings for the past year.  I’ve consulted several doctors, and all have agreed!  The concensus is:  Doing a hysterectomy on a woman 33 years old is radical.  But, with a 15 year history of severe hormonal headaches, a ridiculously long list of tried and failed interventions and therapies, and actual improvement happening over the past year as they medicinally induced a state of menopause…if there’s one person they think it makes sense for, it is me! 

I actually feel little to no attachment to my child-bearing parts, which is, I believe, total grace!  I know so many women who feel so differently, and I’m glad it is not the case for me!  We have three gorgeous girls!  I have been pregnant once and felt quite horrendous!  After 15 years of migraines, the thought of going through another pregnancy, potential breast feeding, (having few if any options of treating the headaches that would inevitably come with that from all the hormonal changes)…it is just not appealing in any way, shape or form!  I had a dream one night that I found out I was pregnant and I was bawling hysterically in my dream.  I’m sure part of that is being totally overwhelmed with the girls I have, trying most of the time just to keep my head above water…which I know is not what I will feel like forever!  And part of it is the level of pain I have been in as a result of my hormones!  I am so ready for the first month I go through that I actually have stable hormones!!! 

Another reason we are okay with it all is that if we were to ever add to our family, we would want a guarantee that our new addition would be a boy!  Our house has all the estrogen, drama and emotion that one household could possibly need.  And with Travis having one of the best adoption assistance programs nationwide at his work, we are in a great place to adopt a little boy, down the road, if we ever decide to. 

Ya know, its just never been all that important to me that we have a biological child.  When we were newly married, we tried to get pregnant and significantly grieved the child we lost, but I am a mom, which is what I’ve always wanted to be.  My headaches have such a profound impact on my life and my ability to parent well, and I want to parent the girls I have as best I can.  Its not important enough to go through all that pain, the mood swings, the missed time, just so I can deliver a child of my own.  Nope, I just want to be a mom!  And as good a mom as I can be to the kids God has already entrusted to me!  So, Tuesday is the big day!!

We are praying that Travis’ family medical leave gets approved, as I am going to be significantly out of commission for a good two weeks, and still recovering for several weeks after that.  Travis will hopefully start two full weeks off of work on Tuesday!  Most dad’s get nervous and a little overwhelmed about being left with the kids all by themselves…but my husband gets excited and looks forward to it.  Sometimes I wonder whether he’s a little too excited to see me go!  Right now he is working 2nd shift, a new switch from 3rd shift just a few weeks ago, so the only time he even sees the kids is when he gets them up and ready for school.  He does the morning school run and then he doesn’t see them again until the next morning.  It really stinks!  So, he’ll get some much needed time with them, while also getting the joy of all the household duties, and a little free time to tinker with his tv and antenna he’s been messing with. 

I’m trying to prep the girls for being “gentle” with mommy…a word that sometimes I think escapes the girls’ understanding.  They are very physical girls!  I call them my “WWF ballerinas”!  Madeline, age 5, weighing 52 pounds, still likes to be carried on occasion!  So, I’m actually looking forward to a couple of weeks not lifting anyone, not having a child throw themselves on me, and being able to redirect all whining to daddy!!!  Just a little of the upside of major abdominal surgery!

Well, I have to go back downstairs to do hair!  I’m trying to get all three heads braided before my surgery so Travis doesn’t attempt to do their hair!  I told Madeline tonight that she better lay down and let me braid or she might end up with a pony tail sticking straight off her forehead!  🙂  Travis actually has a little more skill than that, but there are not many guys who care all that much about hair!  So, off to braid!