. . . . . . . .Defining and Refining

Thanks to everyone who sent emails and gave suggestions to me after my last post. I appreciate the love and support I receive from all of you!

A conversation with a good friend yesterday prompted me to think back in time to when this "journey" began, last year on Easter weekend, when I received my initial diagnosis. At the time, and honestly since then, I have lived in a bubble, aware of only those things I needed to be aware of to survive.

What I have begun to find out, is that outside of my bubble, the outlook for my life was far more grim than I realized. Many friends, doctors, church members and neighbors knew of the location of my tumor and the very realistic potential outcomes, many of which were not good. I continue to find out about predictions that went something like this:

"She's toast."
"I'm afraid she probably won't make it."
"I am losing my friend."
"Don't mean to be frank, but she's a goner."
"She won't be around to raise her kids."

Now as I look back, I don't want to dwell on these things, but they are very good reminders that my life truly is a blessing. I actually did have miracles that saved me!

When people talked to me, they did not say these things upfront of course, and I honestly didn't let myself go "there", to the possibility of my death. I knew that I HAD to stay positive to make it and that was that.

Since I have been home from the hospital, I have heard things like:

"Do you know how lucky you are to be alive?"
"Someone must have been looking out for you."
"I didn't want to tell you or your family, but based on pure medical reasoning, I didn't think you had a chance."

These reminders are critical for me right now, as I am continually struggling with how to become normal again. I feel like I am in a "funk" and figuring out life is harder for me now than I could have imagined. I don't want to let the events of the last year define me, but rather refine me. So past predictions become fuel for my refiner's fire. Now I just have to figure out how to deal with the heat and challenges of my new life.

. . . . . . . . Humble & Help

Why is it that I lose my patience most with the ones I love?

My intentions are always to try and demonstrate love and the gospel of Jesus Christ in action, so why do I end up feeling so inadequate at being a good wife and mother?

How can I teach my children through example when my own example isn't good enough?

As I "feel better" and "return to normal", I realize I have been living in a bubble for a year. I haven't been the main caregiver, the responsibilities have been shared. Now I am feeling quite humbled and overwhelmed by the tasks that are again mine. A whole day of being Mom is often more than I can handle. I hope it will get better in time, but I am feeling discouraged by my daily "outputs" and "outcomes".

How can I become the kind of mother I want to be? How can I fit back into this critical role in my life without feeling like I constantly fall short?

I know we all fall short, I understand that is part of the gospel of Jesus Christ and the reason we all need the atonement of our Savior. So, what can I do to implement changes into my life that will have a positive impact on my family members? How do you stay patient, teach with love, demonstrate kindness and service and keep life in check? Please share your thoughts. My tears tell me I need all the help I can get.

. . . . . . . . Old and New

Old photos. Young people...

Oh, the nostalgia of looking through old pictures! Last night I looked through photos from 1996, when Tolan and I met at the BYU Jerusalem Center in Israel. What an adventure we had! We were young, falling in love, traversing Israel, Jordan and Egypt. We were learning, growing and understanding the gospel of Jesus Christ in new and exciting ways.

The people in those pictures were so young! I look back and wonder with fondness, "What happened to all those people?".

If they were to ask the same question of me, what would be my response? Who am I now? Am I the same as the young lady in those photos? Is that zest for life still in me? More importantly, have I become the woman I wanted to be?

I think I would respond, "I am definitely a work in progress, but at least I am still working on it." :)

. . . . . . . . .Sleepy Head

Since I've been out of the hospital, I've made getting sleep a priority. The doctors told me to sleep (or rest) 10-12 hours a day, which is I've decided is impossible. :) Still, my sleep has taken the number 1 place on my list of "needs" lately, so I attempt to get 8-9 hours of sleep a night. I know this sounds like a lot, but it is never enough. My body is working so hard at recovering, I can use every minute and then some.

So, when it comes to exercise, sleep is more important to me than the 20 minutes of exercise before the kids get up. Sadly, this has been the case with everything, from my morning scripture study to quiet meditation time, or even shower time. Now I wait and do everything til after the kids are up, I get up with them instead of before them.

Today I decided that this needs to change. Now. If I wake up the kids without having read the Book of Mormon, then I am simply not in the right frame of mind to deal with the stresses of the day. The scriptures, meditation time and prayer time are too important to wait.

This morning was the perfect example. I woke up and got the kids out of bed and got them started on breakfast. My children are picky eaters to say the least, and today no one wanted the breakfast on the menu. Instead of being calm, I was, once again, frustrated and upset, right from the start of my day.

Tomorrow I will get up earlier, even if it means I miss out on some precious "recovery" sleep because my scripture study and prayer time need to be a priority to set the tone for the day. Email me tomorrow and see if I did it...I need the pressure of knowing people will be checking on me! :)

. . . . . . . . Yelling Moms, Singing Angels

Tonight I was frustrated and totally worn out. I didn't get the amount of help I wanted in straightening up, and so I blew up at my kids and yelled.

Why do I do this? I have promised myself over and over again that I won't yell at my kids, and each time I mean it.

Tonight when nearly everyone was crying, Tolan said something like, "Everyone takes their cue from Mom." And, as much as I hate to admit it, it's true. I set the tone for the family, so when I am frustrated and in tears, so are they.

So, now the little ones are in bed, my eyes are dry from tears, I am "sane" again, I am promising myself, yet again, that I will do better tomorrow.

All of this because Mom was more focused on the house than the Home.

As I tucked Daven into bed, he said his sweet prayers and sounded like an angel, my little angel. This is why it is so worth it being a mom, even on the hard days.

Here is D, last night, singing the chorus of "I Am A Child of God". (Interpretation: Lead me, guide me, walk beside me, help me find the way. Teach me all that I must do, to live with Him someday. )

. . . . . . . . Visions of Paradise

I am now finally adjusting to being back in Utah, though it took some time "coming down" off Cloud Nine, having lived there for 25 days while we were in Hawaii. :) The cold air here is much harder on me and the doctor told me on Wednesday that Hawaii would be an ideal place for my recovery, while Utah is probably the hardest place in the continental U.S. to deal with my eye issues. But, alas, I already knew that!

Though I wanted to post all 500+ pictures from our trip, the process is too long here on blogger. So, I've posted a sneak preview here and a ton of pictures on another site, and I hope you'll take a minute to visit the link and check them out. Maybe you can find some peace in them, too. (You don't need to be signed up for Facebook to see the photos.)

http://www.facebook.com/album.php?aid=51560&id=1149898583&l=f14d45b33f

Still, I look at the photos and videos from Hawaii and I can't help but feel the warmth. I can feel the sand between my toes and hear the surf as it crashes on the beach. I can see my brothers laying and playing on the beach and realize again how lucky I am to have such amazing "boys" as my brothers. I can hear my mother as she asks my kids what they want for breakfast and see my sister as she lovingly helped my little ones make and frost cookies. I can picture my father walking around the Polynesian Cultural Center, hearing the stories he has to tell and admiring the beauty and peace that is the PCC. I can feel my husband's hand in mine as we walked along the lagoons in Ko'olina and realized just how blessed we are to still be together.

I can feel the hugs of my PCC family as they welcomed me and loved me at each visit. I can visualize the night show "Ha: The Breath of Life" and recall the moments of triumph and tragedy that so mirror real life that I couldn't help but cry. I can see the trees that look like giant pineapples, bordering the campus to BYHU and I remember the view from a top Temple hill, looking out at the ocean. I can hear the squeals of my children as the played Tarzan and swung from the vines on the Banyan trees. I can feel the heat of the pavement beneath my feet as we walked around the Swap Meet and smell the goodness of the malasadas we ate.

I hear the laughter of the guests delighted at the shows they saw at the PCC and I can see Kap, smiling at me while playing the ukelele and showing his beautiful artwork. I can see the poi balls spinning through the air and hear the sticks fall to the floor as laughter spills from the mouths of happy families. I can see the pile of boogie boards and surf boards next to the showers outside Mom and Dad's house and imagine the piles of sand still inside the house in the room where my children brought the beach home with them everyday.

I can feel the love of my family and a kind and caring Heavenly Father who allowed me to heal so much in such a wonderful place. Perhaps I need visions of paradise everyday, to remind me and help me continue to heal. I guess we can all use visions of paradise, be it the mountains, the beach or our own back yard. Where is your paradise? Perhaps you should "visit" it today and envision the peace...

. . . . . . . Tumor & Medical Update

Today I had an appointment with Dr. William Couldwell, my neurosurgeon extraordinare. This man is amazing in so many ways. I continue to feel blessed that I am under his care throughout my brain tumor challenges.

As I waited for my appointment, I read some literature about the Clinical Neurosciences Dept. It reads:

"William T. Couldweel, MD, PhD serves as Professor and Chair of the Dept of Neurosurgery at the University of Utah. He also serves as Director for the American Board of Neurological Surgery and Secretary for the American Association of Neurological Surgeons. Dr. Couldwell has over 230 peer-reviews publications..."

This man is literally one of the best in the WORLD at what he does. Yet, he is humble, kind, patient, warm and loving. I am truly grateful for him!

As he came in to talk to us, he had MRI scans from pre and post-surgery. He brought them up side by side on the computer and showed us the small tumor in my brain that caused so many problems, followed by the current scan without any sign of a tumor. The only thing he sees now are pools of blood, which are OK at this stage. That one small mass had smashed my nerves and was responsible for so many terrible, debilitating symptoms. Now it is gone.

My emotions were so strong as I heard him talk. My scans look "great" with no concerns at this time. He recommends yearly MRIs to keep things in check, as tumors can be "Chronic" and recur at later times.

Next he looked at the scans which showed the inside of my ear and noted that there is no fluid in the ear canal, which means my spinal fluid leak has stopped!!! Even a few months ago when I visited Dr. Shelton, he could still "hear" fluid, meaning it was still leaking inside my brain, but there was no way for the fluid to leak out, as it did through my nose and throat when I was in the hospital.

Again, my emotions nearly overpowered me. Why am I so blessed?

With the CSF leak "gone", I will continue to regain some hearing in my right ear. This will actually cause symptoms, such as tinnitus, or ringing in the ear. I have been experiencing this for months, and it will continue as there are still changes and improvements within my ear.

As for my facial paralysis, Dr. Couldwell says most of my facial "tone" has returned. Again, those who have seen me know this, because it is visible. I am not as "Crooked" as I once was. :) The mouth, eye, forehead nerves and such may still take quite some time to repair, but we are definitely going in the right direction.

As he left the room, Dr. Couldwell looked at me and shook my hand, then reassured me that I am doing "very well" and that he will continue to be "here" for me whenever a need arises.

I truly believe God blesses us with specific gifts and talents. I am so grateful that this man used the gifts he was given and has pushed himself to become a person who can truly help save lives.

I am still reeling with emotion. Thought I am not totally "healed", I know I am blessed. I will still need appointments, rest, down time and medication, but it is truly miraculous to be where I am today!

. . . . . . . . Parable of the Scones

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I made scones today and had a fabulous time with my boys. Casen and Daven love to help me bake and they each had their chair next to the counter. First we got out the hard wheat and they took turns pouring it in the grinder and listening as the wheat kernels magically became light, fluffy, wonderful flour. They like it so much, they eat the flour plain. :)

Next I gave them the measuring cups and spoons and they carefully dumped each one into the mixer. They watched as the mixer whirred around and mixed the ingredients into a sticky dough. Then I showed them a neat "surprise" that when more flour was added, the dough didn't stick to the edges of the mixer anymore, it was like glue and it stuck all the ingredients together! They were amazed.

After the dough was ready, they each got a piece which they patted and pounded, kneaded and stretched. They worked for over 45 minutes on their little sections of dough, adding a little flour here, kneading a little more there. I asked them if they wanted to make the dough into mini pizzas, but neither wanted to, they simply ate the raw dough instead!

Finally, after spending all morning preparing, it was time to fry the scones. The chairs were pulled up yet again, but this time, Mom did all the work, so the boys didn't get too close to the hot oil. For lunch, Casen had 3 hot scones and a glass of milk. He was delighted, then asked if we could share some with his friends. So, we took a bunch of scones to his best buddy, Boston, who is also the son of his preschool teacher, Michelle. She was excited about the scones for dinner.

It was a fabulous day of scone making and scone eating! So, where is the lesson in all of this? Well, I started out the day making bread. I had five wonderful fresh loaves of bread all ready to go, when after 45 minutes, I realized they hadn't raised hardly at all! I had old or bad yeast and my 1.5 hours of work (to that point) had been wasted because my dough was sitting in bread pans, as heavy and thick as bricks. After talking with my sister, Tami, and my friend Cathy (an expert baker and cook!) we decided there was no salvaging the bread.

One "loaf" of bread will make more than a dozen scones, so now I have lots of scones to share. :) So it is time to deliver more scones, this time to my good friend and neighbor, Annette, who had a birthday yesterday. It is not homemade bread and jam, like I had planned, but hopefully she will still like the late treat.

When life gives you lemons, make lemonade. I had really been in the mood for fresh homemade bread today, but boy, oh boy, did we have a blast making scones!

. . . . . . . Dry, Drool, Dysgeusia & Donate

The air is finally clean and I can breathe when I walk outside. It is crisp and bright (almost too bright for my ultra sensitive eyes), but is it so comforting to see the sun.

Though the air is clean, it is also dry again. For a few days we had quite a bit of moisture as snow storms came through the state, but at any other time, Utah is simpy a dry state. The dryness is challenging for my eye. With the facial paralysis, I still can't blink. I still have hope this will get better, but so far, I still have little to no functioning of my eye. The dry air irritates my eye in about 1.2 seconds, meaning the second I step outside, my eye is shot. I keep having people ask if I am in pain or not doing well. Neither is the case. I am doing great, all things considered. But, I often keep my eye covered or manually closed because of the over-dry air. So, if you see me holding my eye, no need for concern, I am fine, it is pretty normal for me in this weather.

Contrary to my eye, my mouth is making great improvements! I will be happy someday in the future to report it is back to normal, but I am not there yet. My smile muscles are coming back (which I am soooo grateful for! I miss smiling all the time!). My "chew" muscles are getting better and I am more easily able to chew food. I still have a harder time with liquids, but that is improving, too. I do find I still "drool" if I try to manage too much liquid in my mouth at once, but in small quantities (out of a straw) I can do just fine.

A bit of great news...my weight is back up to my pre-tumor surgery "norm"! I am not as toned as I could be, but as I regain my strength, I am slowing adding exercises to my routine. Many are as simple as calf raises while I cook, going up and down the stairs, etc, but it is a good start. So, why have I gained back my weight??? I can finally taste again, and food is SOOOO good! :) My dysgeusia, which has caused the metallic taste in my mouth for 8+ months has finally faded to the point where I can actually taste food about 85% of the time! Wow, exciting! Now when I eat, I want to keep eating because it tastes so good to me.

I am focusing on good foods, and my spinach & salad greens drinks and smoothies are my favorite. Add a little pineapple, lime or blueberry and these greens create a tasty, healthy snack. Love it!

I continue to pray for those whose lives are not so good right now. I am anxious to get updates from my sister-in-law so I can hear how our new Haitian niece is doing. Please pray for Valencia and all her countrymen, so many are still fighting for life. I know Valencia has a difficult transition ahead, but we are still so grateful she is here and out of the mess in Haiti. Pray and donate to the relief efforts if you can. My love to all.

. . . . . . . . .Friends and Freedoms

The house is straightened (mostly), the kids are excited and everyone is counting down the minutes. We anxiously wait and peer out the window until at last we can see it! Their car is here, our friends have arrived! The last 2 days I have had wonderful visits from dear friends of mine. We have caught up on life, let the children run around and play, but mostly we have just visited and strengthened friendships that are already strong enough to stand the test of time.

Visits from Emily S. and Brittany H. have just made my week. :) Life is even better when you share it with people you love! Friends like these made me get through the hard times with my tumor and I love them even more now!

Something very exciting is also happening for our family this week. Last night, the newest member of the extended Brown family arrived, literally arrived, by airplane. Tolan's sister and brother-in-law, Teresa and Jared, finally have their adopted daughter, Valencia, from Haiti. They have been in the process of adopting her for 2+ years, and as a result of the earthquake, the process was actually sped up and she arrived in Miami last night.

When little 5-year-old Valencia arrived last night, she had nothing but the clothes she was wearing. Many orphans from her orphanage were flown by helicopter to the airport in Port Au Prince, then flown by plane to Miami, where all the families were gathered to meet them.

Even amidst disasters, miracles still happen! The transition will be hard, I am sure. Valencia doesn't speak English, but she is here, in the United States. She will have food, friends and most of all FREEDOMS she would never have in Haiti. We are tearful and grateful she is finally here!

. . . . . . . .Time Warp

I woke up in the morning, ready to go play with the kids and enjoy a beautiful summer day. Perhaps we would have a picnic or maybe go to the pool. We could take a walk to the river and skip stones...it all seemed so wonderful in my mind.

Then I woke up and realized that it is January, 2010, not June, 2009. It is not summer. I missed summer. Sometimes, I honestly feel as though I am in a time warp. Spring and summer 2009 disappeared from my life. I missed them and sometimes I forget that they have passed. While the rest of the world experienced spring and summer one day at a time, the minutes seemed like hours, but the days and weeks flew by for me. I honestly don't know where that time went. I do have memories, but some are cloudy, others unpleasant, and others are wonderful, but they seem almost like a dream from another time.

So today I am not spraying the plants (or the kids) with the hose, I am looking at the snow-covered mountains out the window and wishing I could get the time back that I lost. As we all know, we can't get time back, which is why it is so important to use it well.

Though I may not remember it, I know it happened, and the results are the reason I am writing this blog today, so it couldn't have been all that bad. :) Perhaps in my dreams I will get my spring and summer back, and in the meantime, I will be counting down the days until my tulips start to peak out and say hello.

. . . . . . . . Believing in Angels

On this day, one year ago, in the early morning hours when most of the world was asleep, my dear, sweet Grandma Vearis Anderson Orgill Lisenbee, left this life and joined her loved ones on the other side. She went from being my mortal example to my heavenly angel.

I could never have known when she left, just how much I would need her to be my angel during the last year. It was 3 months to the day from her passing, that I was hospitalized for the first time for my tumor. Only then did I begin to know (quite selfishly) that I truly needed her to be my angel, and I was grateful she was there for me, on the other side of the veil.

Since that time, I have realized that there really are angels among us. Every single day, I am touched by their efforts. Some are heavenly angels, like my sweeet Grandma. Others are our neighbors, friends, and family. In my case, I know that my parents, siblings and husband are definitely angels. :)

I have seen more miracles and more angelic acts in the last year than ever before in my life. Many of you have been the angels that answered my prayers and pleas.

When my Grandma passed away, I was saddened that I didn't "feel her" presence with me all of the time. I wanted so desperately to know that she was still here, with me. Then as the challenges of life surrmounted, I knew more than ever before, that she is still here, guiding, directly, loving and supporting me through all my trials. She is my "Ha" or "Breath of Life" as the Polynesians so wisely understand. I still miss here dearly, but I also understand now that she is even more needed where she is today, as an angel and missionary to the world.

Love and miss you, Grandma B., every single day.