Deeply Lonely

I miss having friends. 

I miss good friends. The kind of friends that want to tag along when running everyday errands. The kind of friends who know more about me than just that I have a child in a wheelchair. I miss having friends who know something of my history. I miss having a history with friends. I miss conversations that go beyond a quick click or a few kind words. I miss having friends who come to really visit not just check me off a list. I miss hearing friends say my name. I miss feeling truly connected to other people. I miss feeling like it matters to others whether I show up or not, not just because they need me to do a job, but because they want my company. I miss feeling a part of the group. I miss my friends.

What do you do when you feel deeply lonely?

Thoughts on a Recent Experience

I recently attended an event where a guest speaker, a father of a young woman with Down’s Syndrome, spoke to the audience about loving someone with special needs.  I was excited to attend the event; as you know, it’s a subject that is close to my heart.  I am appreciative of the service and the sacrifices this man has made. He knowingly chose his path when he adopted this young girl.  I also appreciated his testimony of Christ.

To be honest though some of the rest of his comments were concerning to me.  Well, if I’m being completely honest, I had to fight tears and if I hadn't been sitting on the front row, I would have left.  I thought I would relate to a parent who has a child with disabilities, and I did in some limited ways, but in most ways, I felt a world apart from this parent. I don't consider myself to be thin skinned and I’m not easily offended about my child. I don’t mind talking with others about his conditions or the effects of them.  And, I love to talk about him.  Thus, I've had to spend a lot of time examining what my issues were with what he shared.  And, now, if you will, I’d love to share some thoughts with you.

What is a disability?  The dictionary defines it as a “limitation in the ability to pursue an occupation because of a physical or mental impairment.”  The legal definition is similar but defines a person as being disabled if they have a physical or mental impairment that substantially limits one or more major life activities. 

We all know that our treatment of those who are disabled has changed over the years.  At one time, they were shunned as social outcasts chaining them to a life of poverty.   In another time, they were grudgingly tolerated by their families and seen as an economic liability.  Perhaps in the worst times, they were treated as “useless” and gassed in euthanasia programs.   Today in most cultures, we have seen the effects of the efforts to eliminate prejudices and, while varying degrees of treatment are still seen, many disabled individuals enjoy a better life than those disabled individuals of the past.

In our culture, we can see the effects of the efforts in education programs, in facilities, and in communication styles.  We have been taught to replace words which have become derogatory with more “pc” terms, such as:  cognitive disabilities to replace retarded, brain injury to replace brain damaged, and short stature to replace midget.  Yet, we all know that pc terms can change and it’s hard to keep up with what’s in and what’s out.  (I recently read that the correct term is accessible parking, not handicapped parking.)  In response to the constant changes, many now often use the more collective term of “special needs.”

When my youngest son was about 4 months old, our doctor said, “He definitely has special needs, but he may never get an actual diagnosis.”  What does “special needs” mean? 

In our case, it meant my son, who is now 7, is cognitively aware yet we would have to learn to read his communications. He lifts his eyebrows to say yes, shakes his head if he really means no, sticks his lower lip out to pout, pretends to be asleep if he thinks it’s too hard, and laughs when he’s tickled. For my son, special needs means that we would need to spend hours teaching his brain how to see images, helping him learn to swallow, moving his arms and legs for him, and generally bringing the world to him to explore.

As one can imagine, it has been a growing experience for our family as we have ventured into a world with our sixth child that was previously unknown.  And, as I’ve thought about the guest speaker’s experiences and my feelings in response, there are three conclusions I have come to:  First, I believe all humans want to be understood.  Second, I believe we all want to be seen – really seen.  And… I believe we all have special needs.

Some when seeing my child, who often is in a wheelchair with unfixed gaze or head down, would be surprised to learn that he has preferences.  I’m often asked if my son has a favorite toy.  He does not seem to have a favorite toy. (Oh, how I wish I knew for sure!) But, he has a lot of favorite people.  He LOVES for people to talk to him, read to him, sing with him, and be with him.  He has preferences for books and music.  He declares his frustration if I’m not fast enough about turning on music when we get in the van. He doesn't always want to share his stuffed animals with his 9 year old sister.  Like so many other children, he can become discouraged or frustrated when we don’t understand. 

Isn't that what we all want?  Don’t we all want to be understood, to have our needs met and to be heard?  Don’t we all want to be able to communicate our feelings, thoughts, and desires to others?  Can you imagine if everyone just smiled at you, said your name and gave you a quick pat on your head, as if they couldn't really hear you?

My son has a condition called cortical vision impairment, which means that some days his brain can process the images from his eyes and some days they can’t.  This means that I don’t know how much he can see on any given day.  I know he can use his eyes to select things from a computer screen on a device called an eye gaze.  I know I have to wait for him to find the picture in the books I show him.  I also know that sometimes others avoid looking at him.   Yet, he wants to be seen.

Isn't that what we all want?   Don’t we all want to see someone’s eyes light up when they see us? To see a hint of recognition in their eyes?  To be acknowledged.  What if people looked past you when you entered a room, pretended you weren't there, or averted their gaze?  Would you look at others?  Would you continue to reach out to others?  Would you know how important you are?

   

Often there seems to be a fear or perhaps an insecurity of how to communicate with my son.  Some well-meaning people respond by just talking to me about him as if he’s not there.  Some well-meaning people respond by looking past both of us.  And, some bombard me with question after question about his diagnosis – the why’s.

Yet, we are all unique and differently-abled.  We all have special needs.  I do; and, you do.  Perhaps they do not fit the legal definition of disabilities.  Yet, each of us have special needs that when met we function at our full abilities, and when not met we may not function at all.  Some of those special needs may include being heard by others or being seen by others.  Yet, there are lots of others.  Some may need additional health care to thrive. Some may need others’ patience as they work through grief.  Some may need a mentor to age gracefully.  Some may need help reaching everything.  Some may need a pet to calm their anxiety.  Some may need an interpreter to communicate.  Some may need others to reach out to them in friendship.

For me, it’s hard to articulate my needs.  It may sound odd, but perhaps one of my special needs is to be needed – beyond my daily roles. 

What are your special needs? 

I believe as we strive to understand and see all the people who cross our paths that we live more rich lives.  And, I believe when we acknowledge that we all have special needs and help to meet whatever those needs are for the people in our sphere of influence that we give the greatest gift:  unconditional love.

I am thankful for the guest speaker who blessed my life and caused me to ponder these things.   I am especially thankful for my son and his special needs.  My heart swells and my eyes leak when I think about the couple of times when he has fixed his gaze on my face; he has seen me and understood me.  I pray I can always do the same for him.

See You On The Other Side

During my prayers when I was a little girl I would frequently ask Heavenly Father to pass on a message to my sister. Perhaps I should tell you that I cannot remember a time when I did not believe that we live eternal lives. I believe the veil between us and those who have not yet been born and those who have already lived and passed on is much thinner than we often think.  So, when I would pray and ask Heavenly Father to tell my sister something, I believed ... and still believe .. that my sister got that message.

One of the men I have loved and adored the most in my life is my Grandfather. Near the end of his life, sometimes he'd hug me before we'd part and cheerfully say, "If I don't see you again, I'll see you on the other side."  So, when I came across the song, "See You on The Other Side" by Shaun Canon, it just felt like he had put my feelings to words.

"I wanna say I'm sorry
I wanna say I love you
I wanna say Don't worry about me now
But you're not around for me to say it....
See you on the side
You're gonna be back in my life."
(Lyrics by Shaun Canon)

To some it might be a little unsettling if I were to always leave with the greeting, "If I don't see you again, I'll see you on the other side."  But, chances are that if you're reading this, you are one of the people who have impacted my life, someone I love, treasure and care about, and I want you to know how much I care about you.  And, even if I don't say it, I'm probably thinking it.  So, I want you to know, if I don't see you again here, I will be looking forward to our reunion there.  And, if you go before me, please know I'll miss you and I'll be working hard.

Seven Years

Seven years ago tonight I sat upstairs at a desk in our game room feeling nervous about the future, but really unsure of why.  The next day's events were not a new thing; I already had five other children and four of them by c-section. I felt confident in my doctor's and all of the baby's prenatal tests had come back normal.  Yet, I had a sense that life was going to change.  And, boy has it changed in 7 years!

Seven years ago tomorrow, the windows of Heaven opened and I have loved Ryan since the moment I first met him. With each child, birthdays feel like a special moment to reflect on not just the first time I got to hold them, but on the passing years.  With Ryan, each birthday feels a little extra special.  Perhaps not knowing what each day will bring has made me a little more grateful that we made it to yet another birthday.

Additionally, since I don't think Ryan marks time with a calendar and I want him to feel really special on his birthday, I have been thinking about and talking about and counting down to his birthday ... well, let's just say A LOT!  And, it's made me think ... a lot.

Recently, I have read and heard some people question whether God is real, whether prayer works, if God really knows or cares about any one person, and other such things about Him.  So, in honor of Ryan, I want to share with you some things that I have learned because of Ryan.

I know God has a better plan than I do because when Ryan took his "first steps," my friend was there to record the sweet hug Ryan gave me when he finally made it to me. I wouldn't have been able to focus a camera through my tears and I'm so blessed to have that one moment in time caught forever.  I didn't know he'd "walk" that day, but God did and so He made the plan work.

I know that God knows me by name because I have had a friend call to say, "Here's the name of a great Pediatric Orthopedic Surgeon and a great Hematologist Oncologist, and here are their numbers."  I had just found out that I needed that information, hadn't posted it on social media, or told anyone, but God knew.

I know that God knows my needs because I have been rushing out the door to the Emergency Room and accidentally picked up a call on my cell phone. It was my friend (and visiting teacher) calling to check on me. She was then able to help make the necessary emergency arrangements for the other children.

I know that God sends angels, both seen and unseen, because I have felt comforted to go to sleep at night knowing Ryan was being watched over.  I have seen countless angels perform countless blessings and miracles in our lives, including but not limited to a small army of angels that sacrificed to bless us with Ryan's van.

I know that God answers prayers because I have had moments when I have felt the courage and strength wash over me that comes from praying and having others pray for you.  The power of prayer has lifted the burdens, given me courage, and strengthened me to do all that is required.  On my own, I am not enough.

Over the years, there have been comments made to me about what a super mom I am or what an amazing job I do with Ryan.  I want to tell you that I am not a super mom and I don't have any super skills.  And, if you have ever thought for even a moment that you saw a glimpse of a super hero cape on me, it is His power -- the strengthening power that God gives.  I am just a short little girl who really, truly believes that God lives and that He will strengthen me to do His will.  I know with every tiny piece of my body that God loves Ryan and that God sent him to earth.  I don't know why Ryan came in the body that He did. I have some theories, but I don't know.  But I know God does.

And, tomorrow we will celebrate and give thanks to God for such an amazing SEVEN years with Ryan!

Taste of Summer

I found this recipe on Saturday at HEB.  It is SOOO delicious and tastes like a bite of summer.  If you can use tomatoes that are fresh from the garden that would probably be best, but if not, at least use some good vine ripened tomatoes.

1 long loaf ciabatta, sliced
1 pound tomatoes, diced
1/4 cup HEB Basting Oil (Olive oil with some herbs)
1/8 cup HEB Organic 3 Leaf Balsamic Vinegar
3 Basil leaves, sliced
Salt and Pepper to taste
Parmesan, optional

Toast your sliced ciabtta in the oven until slightly crispy. Dice your tomatoes, and toss with basting oil, balsamic vinegar, basil, salt and pepper.  Allow to sit at room temperature for at least 5 minutes. Top ciabatta toast with tomato mixture.  Top with shaved Parmesan, optional.

A couple of notes:  I added just a little extra balsamic vinegar, used sea salt instead of table salt, doubled the amount of basil, and I left out the pepper -- just personal preferences. My family enjoyed the Parmesan, but I thought it kind of dulled everything.  I like the Parmesan by itself.  ;)

Pinterest

Don't you just love Pinterest?  I do ... except when I don't.  I don't love that it can eat up a lot of my time unintentionally and that it doesn't always do what I want it to do.  Like right now.  I want to use it to mark this page on education and special needs so I can come back and reference it later; however, it won't since there are no pictures.  Thus, since I try to be a problem solver, you get this boring post.  Thanks, Pinterest.  ;)

Great Quote

Today 

is the 

PERFECT

day

for a

PERFECT

day

For my sister

My sister, Joyce, has been wanting to see pictures of my hair. I don't frequently take pictures of myself and it seems my kids typically take out of focus pictures. But, I think you can get a glimpse of the cute hair style that my friend Michelle did for me. It's been really fun having short hair again. It's funny: I feel more like me than I do with long hair. I imagine that sounds a little odd.

Anyway ... this is what it looked like when I first got it cut. I don't know if you can tell from the picture, but she also colored it. It's a reddish brown. Great color for me. One of my favorite.


And, this is about 6 or 7 weeks later...


Okay, so remember I said, we're not photographers, right? I wasn't kidding. Sorry about the glare of the light. I was actually on my way out to get my hair cut and I wanted you to see how cute the curls were. I'm not entirely sure that once Michelle cuts them off that they will ever be there again.


You know how Jason's hair curls up in the back, mine does too. That's what this picture is supposed to show, you but instead it seems to show you that our tree wasn't really perfectly straight either. (Oh, well.... The tree looked really beautiful!)


Well, none of these pictures really do justice to the curls, but better than nothing, right? Just after I took these pictures I went over and had my hair cut. It always takes me a few days to adjust to hair cuts. So maybe I'll try some more pictures in a few days.

What I know...

Tonight I taught interviewing skills at our weekly employment workshop. I love the workshops. I love the candidates and the other specialists! It really is a treat to be there each Thursday evening.

As I drove home tonight I was thinking of some of the concepts that we discussed. The 2 that really stuck out in my mind are:
1) It's all attitude.
2) Let your light shine.

Let's talk about attitude. In an interview, an arrogant attitude will land you no offer and a shy, bashful attitude will not help you either. However, a confident attitude goes a long way in making a good impression.

It's also true about life. I bet you've noticed that, too. What I can testify of today, that I might not have been able to do before, is that attitude also helps you in adversity. What I know, without any doubt at all, is that God will work every trial, every irritation, every adversity, every weakness to your good ... IF you will allow Him. AND ... IF you will, you will see his tender mercies all around you. I know without a doubt that you will. It's all about the attitude.

(Please know that I am not saying that the road will not be hard or long. I just KNOW that He will not leave you comfortless. I know it.)

And, #2 ... Let your light shine!!!

I frequently see candidates who really don't know how to speak of their talents and/or accomplishments. Often they want to tell the mock interviewer all the reasons they aren't the perfect candidate for the job. This always brings to mind the following scripture:

"Therefore, let your light so shine before men
that they may see your good works
and
glorify your Father which is in Heaven."
~Matthew 5:16

You probably remember this chapter. The Savior is speaking to his Disciples. He preaches what is usually referred to now as the "Sermon on the Mount." Remember, "Blessed are the ___; for they shall ____." It's a great chapter. I love the part about the salt. In our day it seems a little odd to say, "Ye are the salt of the earth." But, when you think about salt and it's significance, it really brings a whole new meaning to this chapter. (I'm off on a tangent. I will bring it back, I promise. But, you should check out this article on the significance of that statement. What is salt really? Great article.)

Anyway... back to Let your light shine!

Can you bring people to Christ if you won't communicate with them? No. Can you bring people to Christ if you have no confidence? No. Where did your talents come from? (And, yes, YOU DO have them!) from HIM! Let your light shine! The interview is the place to communicate your strengths. You don't need to be boastful or prideful. Just share them.

Come to think of it... an interview isn't the only place to do it. Sometimes I'm amazed at the talents my friends have. Friends that I've known for years. Why haven't you shared your talent before? Do not hide that which God so lovingly gave you.

That's what I know.

PS... I haven't met anyone yet who doesn't have talents. And, yes, I meant to say talentS.

I love my job! Today.

I was just watching last night's American Idol episode and doing laundry. You know the routine ... hanging clothes and folding towels, sheets and pillowcases. Such a mundane task. Then during the first commercial break, I went into our bathroom to put away the folded towels and replace the used towels with fresh towels.

That's when it occurred to me. As I was taking down my husband's towel that was still slightly damp from his morning shower, I felt such joy! I love my job! I'm not sure if he even realizes that I give him a fresh towel every time I do laundry. But, I love that I can serve him. In such a simple way, I can do something nice for him.

I haven't always loved this aspect of my job. So, why do I now?

Perhaps, it's because of a conversation I had with a friend last night. She commented on how sweet she thought it was that when Dwight spoke in church last week about maintaining faith while enduring trials, the only thing he talked about as a trial was my health issues. It was just me that was at the top of his radar. She thought it was sweet. I hadn't really thought about it.

It was sweet.

She also shared with me a conversation she had with a friend. This friend had attended one of the conventions they have about families. I've heard of it. You probably have too. It's a worldwide conference to discuss ways that we can strengthen the family in these days when the idea of family is really being attacked. One of the comments that was made by a woman from another country was directed to the women of the western culture. In her country, women have been forced to start their children in government run schools by the age of 2 (or was it 3?) and they are required to go to work. She spoke of her confusion as to why women of the western culture would willingly choose to do those things.

I recognize that not all women willingly choose to put their kids in school early and I am truly aware of how many women are returning to the workplace when their heart's greatest desire is to be a full-time homemaker. However, with that said, and understanding that I am not placing judgment on anyone's situation, I think she has a very valid point.

And, today, I am very thankful for the mundane tasks like laundry, cleaning bottles, changing diapers, vacuuming, etc. I am thankful for the opportunity I have to serve my family, to have my children with me, and to (do my best to) make my home a little piece of heaven.

I hope you love your job today, too. Whatever that job may be.

Good Bye 2009

Can you believe 2009 is almost over? It's been quite the year, hasn't it?

I have lots to tell you about. Christmas, job loss, anonymous gifts, treasures, blessings, updates, etc. But, tonight won't be the night. I have an awful headache tonight. Dwight and I went to the store in hopes of finding a "cure" for the headache that won't just knock me out cold for the night. After some research, I'm sniffing Peppermint oil. It helps a little, but I must admit that I'm contemplating taking the real drugs soon.

Hopefully, tomorrow will be a better day ... better in terms of how I'm feeling ... today was actually a gorgeous day ... 75 degrees with just a slight breeze. Anyway ... assuming I feel better tomorrow, I'll be sure to post an update on all the above stuff. So much to share with you all. But, the most important message for tonight is:

Happy New Year! I hope this new year will bring much happiness, good health, wealth, and pure joy to each of you and yours. Talk to you next year!

Today's Uterine Ablation

This post is being shared in an effort to share this journey with honesty. I hope you are reading this because you are my friend and not because you are searching blogs for some ray of hope about Lymphoma. If the latter is true of you, please be sure to read more than just this single blog entry.

Last night as I was preparing stuff for today's outpatient procedure, I realized that I had failed to get the ordered blood work done last week. I was supposed to do it 1-2 days before today's uterine ablation and somehow I forgot.

I'd like to use the excuse that I was so busy or stressed, but really. I was sitting in a hospital room with nothing to do but read, knit, and hang out with Ryan. I could have taken 10 minutes to walk down to the 1st floor to do the blood work. Really. I hate it when I don't stay on top of stuff. I'm normally very, very good at details and it seems lately I don't do details well at all. This frustrates me.

If you know me well, you know I tend to be just a little uptight and a little bit of a perfectionist. I try really, really hard to pretend that I'm not. My children think I have a touch of OCD ... you know, "Obsessive Compulsive Disorder." I really don't. I just have a lot of high expectations. Not so much of you, but of me. So, when I forget things or fail to do things that I'm supposed to do, I feel very frustrated by it.

This morning, the frustration of my failure, and I suppose the anxiety of another crazy busy week of dr's appointments and the unknown really got to me. I called my ob/gyn's office to see if we could still do the procedure today. Part of me was hoping that they'd say we needed to reschedule, the other part of me was nervous about trying to fit in an appointment on any other given day. After the sweetest nurse was so understanding and said it would be no problem to go ahead and do it today, I hung up the phone feeling mixed emotions. Then I sat and cried as my children asked me about juice. (Really? Two refrigerators, a pantry, and a food storage with plenty of juice. Pick a juice and have some.)

I cried because I don't want to be poked any more. I cried because this really is only the beginning of more pokes and I don't see an end in sight. I cried because "this gift" has never really felt like a gift. Why is our body a gift to us? I've never understood that idea? Don't get me wrong. I'm thankful for all the things that my body allows me to do. But, I also feel frustrated by all of it's shortcomings (pun intended.)

After a couple of minutes, I realized that I had too much to do and am too blessed to feel sorry for myself. So, I picked myself up and got busy. I did fairly well until I realized that the boys' bathroom was not only full of dirty clothes (even though I had asked them to put their dirty clothes in the laundry at least 3 times), and that there was dried vomit on the toilet still from last week's fight with the flu. REALLY? Dried puke. That's disgusting. Why hasn't anyone done their chores? I called the boys in to remind them that they had been asked 3 times and shouldn't have to be asked ever to do their daily chores. But, what would normally be a calm tone with me stating the expectations and declaring a fair consequence became me raising my voice at the boys and threatening to throw away everything they own. And, then crying.

I immediately went to my room recognizing that I was not handling things well. I said a prayer and pleaded for peace ... and forgiveness. The boys hadn't done what they were expected to do, but they too deserve mercy and justice, not an irrational mom. Before the end of my prayer, my friend showed up to take Ryan for the morning and to drop me off at the hospital.

I asked my friend, "Why is it that I can handle big challenges like Cancer and a Special Needs Child, but really not-so-important* stuff can set me off?" My friend in her wisdom explained that it's probably because I'm reaching to control something. So much of my life is not in my control and how the house looks and how the boys do their daily chores is something that I might be able to control. Her answer felt right.

I've thought about that all day today...

My little guy, Ryan, truly feels like a gift from God. I've loved every baby and feel the heavens near with every little baby that I've ever held. But, with Ryan ... 16 months after his birth I still feel that I am in the presence of a great little spirit and I frequently still feel the heavens near. I'm honored to be his Mother.

The Cancer is a much harder task, but only because the medical stuff scares me a bit. I do think it's an opportunity to become a better person. To be refined. Purified.

The every day routines, the every day challenges of teaching and raising 6 amazing children ... maybe I need to see those as the gifts they really are also.

Thankfully, tomorrow promises to provide lots of opportunities.

Tomorrow also brings another appointment with the Oncologist and hopefully a treatment plan.

Someday I promise this blog will not be all about me.

*Not-so-important stuff: While I don't think the house being spotless is the most important thing, I do believe in teaching children to work and to obey. I think chores are a great way to do it. I believe that if we teach children to work and to obey then they will grow up to be better citizens and better disciples of Christ. And, I believe it will bless their lives.

A Great Quote

Today I was actually able to spend most of my day at home. Ryan's EEG was at 8 am and so we were home shortly after 9.30. It's dark and I haven't left my house all day. Yippee!!

Obviously, there's lots to do at home. I needed to pack for this week's hospital stay and I also wanted to start packing for the move.

I was able to pack all the non-essential items in my little corner of the master bedroom. And, tonight I started the scary process of cleaning under my beds. What did I find there? A lot of dust, lots of feathers, scripture readers, a board game, lots of unread magazines, several well-loved knitting magazines, and a partially eaten bag of fiery hot cheetos. (I hate cheetos, except when I have a cold.)

Oh, and I found this quote:

"With so little time and so few opportunities,
what words of doctrine from me will fortify them
against the attacks on their faith
which are sure to come?"

I think Henry B. Eyring must have said it. It sounds like him, doesn't it?

Today has been a very nice day. No appointments. No needles. No stress.

Dwight took 4 of the kids out for the day. They seemed to have had a good time together. I think they all really enjoyed being out of the house.

Jessica, Ryan and I went shopping for a light jacket for Jessica. I would have never imagined that my daughter would hate to shop. She doesn't like the feeling of the material. or the color. or the look. "Everyone has one of those." "It's too formal." "Can I paint something really awesome on it?" "Can I modify it?" I can tolerate it for about 45 minutes and then I'm ready to go home. Seriously. So, no, we did not find her a jacket. I think it's Dwight's turn to take her shopping next. But, instead of going home, we bought pretzels and lemonades, and just walked and talked. It was nice. I miss Jessica.

Later this evening, Jessica, Deborah, and Ryan went with me to the new house. We measured all the rooms and the windows. We need to clean the place, paint a few rooms, and put up some blinds and curtains. I'm anxious to get moved in. Actually, I'm anxious to mark the move off the list.

Can you believe this next week is Thanksgiving? I need to come up with something nice that our family can do for the nurses who will be working while we're at the hospital. If you have any thoughts, please let me know.

Enjoy your Sabbath tomorrow!

Dreading Tomorrow

Well, I guess it's actually today that I'm dreading since it's now 12.03 am. The bone marrow test is tomorrow. Did I mention that they're doing conscious sedation? Really? Conscious? I really want to be UNconscious for it.

Ugh. This is going to hurt.

The Full Scoop

Well, the word has started to spread so I think I'll just come clean and tell you all the full scoop. No, I'm not pregnant again. Whew! Right?

Earlier this year, I scheduled an appointment to see my dermatologist. I wanted to get some prescription strength lotion to get rid of the eczema I had on the back of my neck. The night before my appointment, I mentioned to Dwight that I was going in the morning and he said, "You should have him look at that spot on your face." I didn't even know what spot he was talking about. So, he pointed out that I have a little rough spot right about where my glasses sit on the nose bridge. "Sure, Sweetheart, I'll have him check it out." So I did.

As some of you may know, the dermatologist determined that it was a spot of Actinic Keratoses (AK) on my face. (AK is considered the earliest stage in the development of skin cancer.) So, they gave me some medication to put on it twice a week and scheduled an appointment at the end of summer to follow up.

On October 8th, I went back in for the follow up visit. The nurse handed me a gown. I politely explained that the spot was on my face and I didn't think I needed to put on the gown. She said that it was just standard practice during follow up visits for the dermatologist to look over all the skin. Okay. Fine. Whatever.

While he was looking at my back he noticed, again, the half a dozen plus lumps I have on my back. He confirmed with his notes that we had biopsied one before and that it was just related to my lupus. That one had come back as "inflammatory cells." But, then he decided to biopsy another one. Okay. He did and then instructed me to come back in two weeks to have the stitches removed.

He also noticed some of the other weird skin things I have going on at times, and asked if I had any muscle weakness. Well, sure I have Lupus ... I have good days and bad days. I have days when workouts seem much too easy, and other days when I can barely get through the workout with my own body weight. He then suggested I see my Rheumatologist and talk to him about determining if I have dermatomyositis.

On October 20th, I wrote in my journal: "While I was conversing with the ladies at co-op today, I received a call from the nurse at the dermatologists office. The biopsy results showed "inflammatory cells with atypical appearance." They are sending it to another lab for further review. They don't know how long it will be before the results are back. I felt like someone had just pulled the rug out from under me. I was expecting it to be a lupus lump or some symptom of the newly suspected diagnosis, dermatomyositis. I wasn't expecting anything different."

Then on Thursday, October 22nd, at 2.30 pm the dermatologist office called to confirm my appointment. I hung up with them and decided to take a nap. At around 4 pm, the dermatologist office called back and his nurse asked me to hold to speak to the Dermatologist.

I recorded in my journal: "The nurse from the dermatologist office called. She asked if I could hold to speak with Dr. Dotson. Hmmm... it's never a good sign when the dr wants to speak directly to you. He started with some nicities. Then said, we need to do additional immuno something studies. He thinks this is a lymphoma. This lump is denser of the lymphocytes than the previous biopsy. There is definitely atypical infiltrate, and they think I have marginal cell lymphoma. He will be contacting a hemotologist oncologist for blood work. He will also contact Dr. Kempf to see if he can get me in early than 2 weeks from now. I don't even know what to think. I don't want to tell Dwight. He already has a pretty full plate."

The next morning I went in to meet with the Dermatologist and to have my stitches removed. Later that afternoon I recorded in my journal, "I went to see my dermatologist this morning. It's not good when a doctor walks in the room looking compassionate, and offering apologies and compassion. Hmmm... I immediately sensed that this wasn't just a "we think this is cancer and we need to get further tests." I was right. The official diagnosis, with 4 doctors concurring is that I have lymphoma. Okay. I can do this. Just another marathon. We talked about the lumps. He feels bad that we didn't catch this 6 years ago. We had biopsied one of the lumps. It didn't seem necessary to biopsy each of the lumps. Plus, lupus seemed to explain all of the symptoms and the steroids gave me some relief. Dr. Dotson told me about the doctors that did the pathology reports, the doctor who is doing the immunophenotyping and characterization, and the hematologist oncologist that he wants me to see. Am I really being referred to an oncologist? This just seems unreal."

During the appointment, the dermatologist explained that he had reviewed the case with 2 other doctors who concurred that this is a Lymphoma, probably a cutaneous B-cell marginal zone lymphoma. So... next stop the oncologist.

I realized Friday night that I really process a lot by writing about it ... more specifically by blogging about it. I also felt impressed that I should be open and willing to openly share this new challenge. So, from here you'll read the blogs that I wrote but didn't publish before now. I hope you'll understand that I'm not going to filter my writing for a while. I want to be honest about what I feel ... right or wrong. This is a little hard for me as I don't really like to show my weaknesses. I imagine none of us do, but I will share this journey with you honestly and openly in hopes that you as a reader might find something that will bless your life. (I hope your challenges never seem too hard to bare, but I suspect that's not the Lord's plan.)

Speaking of challenges being too hard to bear ... just before I found out this whole thing, someone said to me, "The Lord never gives us more than we can bear." (or, would that be bare?) I've heard that lots of times. I bet you have too. Do you believe it? I don't. When I first started to realize that I don't believe that statement, I felt a little like I was being rebellious or denying the faith. I have sense come to realize what I do believe about that statement.

I believe that we ARE at times given more than we can bare. I believe that the Lord blesses us with more so that we will get down on our knees, so that he can sanctify us, purify us and qualify us for the His glory. I also believe that in doing so He will never leave us comfortless. He will always help to carry whatever "cross" he gives us, if we will just simply ask.

So back to the scoop ... Saturday night I didn't sleep much. At 3'ish a.m. I wrote, "I've been awake for about an hour now. I'm scared. It seems I'll probably have to get a bone marrow aspiration and biopsy done. I hope not though. It sounds just awful. I know how much it hurts to have a bone cut into. This is gonna be hard."

Sunday was an amazing day. We attended the Sunday session of Stake Conference and it was as if almost every message was prepared just for me. One talk in particular, Bro. Brooke's was inspired for me. It was as if Bro. Brooke's words were His words for me. Have you ever experienced that? I hope so.

After church, I received a Priesthood blessing. It was such a comfort. It was also so comforting to be able to openly share this challenge with our close friends the Miller's and to know that we were/are not alone. I appreciate our friendship with them so much!

Sunday afternoon I wrote a little more in my journal: "I've been handling all of this pretty cheerfully. It obviously has felt heavy, but today the sense of urgency to handle it and the sense of enormity of this event has become more real. Yet, it still feels too unreal to believe."

(The rest of this post are a combination of my current thoughts and writings from my journal.)

I do not nor have I thought that I might die from this. This type of Lymphoma is very treatable. It just sounds like it might not be very fun. I'm starting to think the treatments might not be as bad as the tests.

But hearing the word "cancer" makes one think about just how fragile mortality is. Oddly enough I had this experience about a month ago too while driving home. I was just driving when it really hit me just how fragile mortality is. No, I didn't think "I'm going to die soon." I just realized that any of us could be called home at any minute.

What if I did die ... from a car wreck, or choking, or some health issue. Am I prepared for that? Have I prepared my children enough? And, I know there is an eternity. I know life continues in the spiritual realm, but what does that really mean? What will I do there? Will I still be able to watch over my children? I know dying people tell their children that they will, but will I really be able to watch over them if I die. Geez, I hope I don't die soon for any reason. I have a HUGE to do list. Does God know that I have a lot to do still? I hope so.

In addition to my to-do list, I'm sure I'm not prepared well. There's so much that I need to be better at. I'm not as close to the Savior as I could be. I don't pray often enough. I don't study my scriptures daily. I try, but do I try hard enough?

I worry about how the children are going to deal with this. I'm especially worried for Dwight. I hope this will be his opportunity to really understand how much the Lord loves him.

Really -- what will it be like on the other side? Will there be beautiful beaches? Will there be cool fish to look at? Will I have time to dive? Wouldn't that be cool if I could dive and not have to worry about being attacked by a shark or about losing my oxygen. LOL! Okay ... obviously, a subject I should study more. Because I know there is more doctrinal knowledge of it than I have.

And, again ... I'm really don't think I'm going to die any time soon ... but hearing the word Cancer used as a diagnosis does really make one think about the fragile state of our mortality. And, it obviously made me very nervous cause here's what I wrote before going to the Oncologist on Tuesday:

"I feel like I can't breathe today. My heart is racing and I feel so short of breath. Perhaps this is what an anxiety attack feels like? I'm so nervous about today. I told Sis Hilton, my visiting teacher. I couldn't even hold back the tears. I can't say the words Lymphoma or Cancer without crying. HOw am I going to convince everyone that I'm going to be okay if I can't even say the words? I am going to be okay. There are just too many questions and not enough answers. I hope I get some answers today.

You know the one activity that has helped me to feel peace today is focusing on other people's needs. I worked on a couple of employment needs, and I felt at peace then. Good lesson for the future -- serve others to feel peace."

So, back to the scoop instead of my ramblings... the Oncologist, Dr. Ulmer said we need to get the tissue back from the lady who is currently looking at it. Dr. Ulmer doesn't feel entirely confident of her abilities and so once he gets the tissue back, he will probably send it off to the National Institute of Health (NIH) in Maryland.

He also said we need to find out how much is there and where it is. Then we will need to decide how to treat it. So on Tuesday they took a bunch of blood, then on Thursday I had a CT scan of my abdomen, pelvis, and chest with and without contrast. (I got to drink LOTS of barium. Yum.) Then on Monday I get to go for a Bone Marrow test. Luckily they are going to sedate me for it. Ewww.... that's the one that makes me most nervous.

The best case scenario is that the Lymphoma is just in the one lump. We can remove the lump and treat with radiation or possibly even just a topical treatment. The worst case scenario is that the Lymphoma has spread to my lymph nodes and/or bone marrow. In that case it could require chemotherapy. And, the worst part of that is actually the side effects of the chemo. So, hopefully, it'll just be contained to the one lump.

About an hour after I got home from the Oncologist's office, they called me back and said they need more blood to check my platelets.

Hopefully, all these results will be back within 2 weeks and we'll be able to make the necessary decisions.

On Wednesday, I went to see my Rheumatologist. He's a great guy. Dr. Dotson had already talked with him. So, we talked for a while and then he ordered MORE bloodwork to check my muscle enzymes. Apparently, there are times when Lupus morphs into dermatomyositis or polymyositis. It is also common to see dermatomyositis with Lymphoma. So, we'll see what my muscle enzymes show. If they are high, then I'll need to have a muscle biopsy and a nerve conduction test. Neither of those sound like fun. Hopefully, everyone is just over-reacting and I'm really just a big whimp. :)

I had my CT scan yesterday. It was fast. The contrast is sure a weird feeling. I could feel it spreading throughout my body. Crazy, weird.

I received a call today about my bone marrow biopsy on Monday. They are going to do "conscious sedation." Are you kidding? Would you want to be conscious???? What is wrong with these people? They ought to put me asleep! I mean really asleep. I don't want to hear or remember any of this.

So... that's my update. I'll keep you all posted!

A beautiful Sabbath

Today was a beautiful Sabbath, wasn't it?

Have you ever attended a meeting where you felt like everyone knew your heart and mind, and spoke directly to you? I had that feeling today. With one talk specifically, I felt very impressed that his words were specifically for me. It didn't surprise me then when after the meeting he said, "I had you in mind when I prepared my talk." Some time in the near future, I'll share some of my notes from his talk. I'm sure they apply to all of us.

Here's my new favorite scripture:
"I will not leave you comfortless; I will come to you." ~ John 14.18

And from a hymn:
"In every condition, in sickness and in health ... As thy days may demand so thy succor shall be."
~ How Firm a Foundation

Great, aren't they?

So Dwight and I were on our way out for a date. Kids started asking the normal questions ... where are you going? when will you be home? I said, "We're going on a date so we can make out." End of questions. A couple of seconds later, my 7 yr old, Johnathon, said, "When I'm older I'm going to go on dates and make out." Oh, wrong message. So, Dwight replied, "You can do that when you get married." Deborah started happily chanting: "I'm gonna get married and make out."

Crockpot Heaven

For a while now, I have been trying to use my crockpot/slow cooker more frequently. A good friend even gave me her recipe booklet and we've learned lots of new tricks from it.

Tonight my friend, Kelli, showed me a great website that I just had to share:

http://crockpot365.blogspot.com/

And, from there, you may also want to check out Slow Cooking Thursday:

http://familycorner.blogspot.com/2008/02/slow-cooking-thursday.html

If you make any of the recipes, let me know what you think of them. Maybe I'll try it ... or avoid it ... based on your recommendation.

2 Ear Infections

We went to see Dr. Rhame today. (Have I mentioned that he's really the very best pediatrician ever?) Ryan has no fever today, but is still draining fluid from his right ear. A lot of fluid. The verdict: both ears are infected and the right ear drum is ruptured (again).

Rx: 10 days of Amoxicillin. If he's starts running a fever again, or if his ear is still draining on Monday, then we'll go back in to see Dr. Rhame again.

He slept in 15 minute increments last night. So, needless-to-say, I am very tired tonight. I'm hoping to get a good night's sleep.

Dwight was a sweetheart tonight and took care of all the kids plus Kelli's little girl, Rebecca, while Kelli and I went to a Fab Friday. Fab Friday was basically a ladies night out for making crafts. I made a great magnetic board, and Kelli made 4 magnets for me. Plus, I etched a family name on to two glass Pyrex pans to use as a wedding gift next month. I'll have to take pictures tomorrow of both projects.

I'm super tired so I'll post more tomorrow.