Natezilla

Here is one of our family's "home videos".  We did this 3 years ago in Erie, PA. Instead of scrapbooking, Dan made a movie for each baby we had before they turned one. Here's "Natezilla"

"Is She Still Sick?"

There is so much power in the words we say. When I had my little baby Luke, it was very important to me that I always said I had a baby that passed away instead of I lost my baby. I knew that I had gained a precious son that day in the hospital. My family grew and enlarged as I could feel his sweet spirit. I didn't lose him. I knew right where he was and he was with me.

I think that often other people forget the power in the words they choose to say to others. Even when they are well intentioned. It has definitely affected Dan during this time. Since he is usually at church with our three boys without me, almost the only thing anyone ever says to him is "Is she still sick?" "Is Emily sick again?" "Oh dear, is she not feeling well today?" Every single Sunday, every single time, the only thing anyone talks to him is about how sorry they are for how hard his life must be.

On New Year's Eve Dan took the children to the Stake Party at the church. He left the house excited to play some games, eat good food, and have fun with his boys. When he came home later, he walked in the door completely deflated. "What's wrong?" I said. He looked at me with this tired expression on his face as he sat down on the couch, "Well, let me tell you how my evening went. The entire night, here I'm at a party and the only thing I hear is how sorry someome is for me. How terrible things must be. How hard my load must be." He said "Emily, I don't even know what to say to people anymore. I want to interrupt them and say - no, I'm happy. I came to have fun tonight! It's okay. But the more people talk to me the worse I feel."

I think it's the equivalent to a single 35 year old woman being asked every Sunday at church "Are you still single?" "What, you're not married yet?" "Don't you want to get married?" Trust me, everyone, she's more than aware she is single! But life moves on, and you have to find ways to still have joy in your life even if you have not yet received the deep desire of your heart.

I asked Dan if I could write about this and at first he said no because he didn't want to offend any of our friends. Trust me, this doesn't apply to any of you who are reading this. I cannot tell you how much of a help your prayers, condolences, and helpful thoughts have been to us. This happens mainly to Dan with people at church who ask him these same repetitive questions until he feels like he's going to scream! Any thoughts on a good reply? He needs to be able to be honest, but we wish there's a nice response he could say that could change this cycle without hurting someone's feelings. I really do believe people are asking with kind intentions. They just don't realize how it wears him down. Any good thoughts, anyone??

Lunch Date with Dan

One day Dan comes home for lunch. As we're eating he casually says,

"Hey, while I'm here with the kids, why don't you go take a nice relaxing bath?"

"Oh, thanks, but no, I'm fine. Let's just eat!"

"Are you sure? I wouldn't mind."

I smile as I nod no, thinking it's so nice he wants to give me some quiet time to myself.

20 minutes later as he hugs me goodbye, he whispers quietly in my ear,
"Honey, when's the last time you had a bath? You're really starting to stink."

What?!! Lucky for him, I was laughing so hard, I couldn't even wack his arm! And, I had to admit, it had been a while!! He had tried so hard to tell me without making me feel bad, but I was completely oblivious. I guess true love means being brave enough to tell your spouse when it's time to wash!

Sharing Your Water

I think we all have a well of strength and peace inside of us that comes from trying our best to follow Christ. Each day we either add to it or draw from it. On some days, we have extra strength to store up in our reservoir.  On others, we have to pull more from it.

When my illness began, I started out with this great big well filled to the top! Life was so good, we had finally made it to the goal we had worked so hard for - Dan was actually practicing medicine and we had moved home to the West! So as each day my health got worse and worse, it was still okay. I could just pull from my well each day and use what I needed. I had plenty. I knew this would pass soon and everything would get back to normal and we could start planning our next party! (Oh, how I do miss throwing a good party!!)

Well, after 400+ days of pulling out more than I can replace, and especially on days when my body is worse, it feels like when I try to draw from my well it has run dry. And then it hurts and I wonder how much longer I must endure. I am sure there must be so many others who feel this way. Perhaps its not physical, but maybe it is a spouse who isn't as kind as he could be, or a child who has a hurt that you as a mom can't fix. I know some who don't receive the love they deserve to receive and others who feel alone in a crowd. I know there are many invisible trials that people carry in their hearts that only the Lord knows.

I felt this way Tuesday morning. My symptoms had increased and my well was dry. But I had just started my blog and finally decided it was okay to invite my friends to read it. Now, my hope is that by sharing my experiences, maybe it can help someone else in some way. What I wasn't expecting was for my dear friends to help me! Thank you for sharing the water in your wells with me! Each wonderful message or phone call I received just gave me so much more strength!  There is so much power in telling someone "Stay in there, you're gonna make it!"

Each of us has an incredible power to lift those around us. The amazing thing is, as we share our strength from our own well, I really do believe we are blessed with an increase of our own. (Within reason, of course. We can't be everything for everyone! And some will try to take too much from our precious reserve.)

So thank you for sharing your strength with me. Yesterday, as Dan pushed me in the wheel chair as I tried to hold a crying Lincoln in my lap and a stranger stopped me and asked "What's wrong with you?" I had the strength to smile back and say "Oh, this is only temporary. I'm okay!" And I really am! Love everyone so much!  

Other People's Pressure

Okay, I've got to let out some steam. Church callings. Church callings when you are sick. When we moved in to our new ward I told the Bishop as clearly as I could how serious my illness is. I explained to him as best I could how I was told by the Mayo Clinic that my best chance at a recovery is to pull out of every possible commitment, activity, stresser, etc. (Which at the time, I remember thinking was a funny thing for the Dr to tell me because I had already been down for so long I had nothing else left to pull out from).

Well after explaining this to my new Bishop, his response was I want you to be the Primary Pianist. "Sure," I replied. "If I can get well enough, I would love to be able to play for the Primary." "No, I want you to do the calling now." "How am I supposed to play when I can't even be well enough to go to church?"  "You will receive blessings from having a calling." At which point I wanted to ask him if he had received a revelation telling him if I accepted this calling I would be healed (but I held my tongue) because that would be welcome news to me.  I would gladly accept to be the Relief Society Pres. and serve 10 hours a day if it meant my body would start to work again! I said, "I don't see how I can fulfill this calling." Bishop "Just do the things during the week you need to in order to be well enough to play on Sunday." Wow, seriously???  Golly, gee, why didn't I think of that already?? Oh, what a great idea? Let's just decided for my body to start working.  What does he expect for me to do "during the week" to get better that I haven't already tried for months at a time? Gee, maybe if I just do that I will get better by Sunday??

Okay, so he finally agreed that when I was too sick to be there his wife could substitute for me. So basically its been her calling. I think I've been well enough to attend church 2 of the last six weeks, but have only made it past Sacrament once. I did go and play and I was so worn out afterward, I just sat leaning up against the back wall till Primary was over, completely shot, feeling miserable. It's like they cannot understand and just act like I'm less active or don't want to serve. Is it because I am young? If I were 90 and looked like how I feel would they put this pressure on me or would they instead do the kind thing and send someone on Sunday's so I could partake of the Sacrament?

Now, I sustain my church leaders and I support them. I am not complaining about him in his role as a Bishop. I just sometimes feel like I do not know I am supposed to do. I just got a call from my friend in the ward who I hire to come everyday and take care of me and my children. She just spoke with the new primary president who is feeling put out that I am not "fullfilling my calling" and if I would just realize that I would be blessed for playing the piano, I really need to be there every Sunday. Wow, what a way to make me feel like crap. As if it is not hard enough right now to find a purpose, a way to feel like I can contribute when I am not well enough to even change my son's diaper. Sometimes I cry out to the Lord and say "Why have you blessed me with so many talents if I cannot use them?" "What am I supposed to be doing now?" And I have felt the sweet and tender mercies of the Lord in the warm feeling that I am his Daughter and that as I love and help those around me, I am serving him. As I teach my children the gospel, as I share my testimony, it is enough. What I don't need is other people who either don't understand or don't care to understand my situation to make me feel guilty.

Blessings

This Sunday I kept getting the most wonderful feelings all day everytime I looked at Lincoln and Nathan. What a blessing that this trial has come into my life during a time that my children are so young. Many times, people will say, oh it must be so hard having little ones at home. But today, as I looked at them, I realized the beauty in the Lord's plan for our family. They are so happy and content to be at home playing all the time! They don't care that their mom can't take them anywhere. They don't care that I'm wearing old stained sweatpants while I watch them play. They are innocent and happy and feel loved as I give them hugs from the couch. What a blessing!

How much harder would this be if they were in High School, or Junior High?! Not being able to participate in the many extracurricular activities because I am not well enough to take them. Not being so content to just stay home day after day with me. The Lord knows me and my family and he looks down upon us with his blessings. He cannot take everything away for us and some trials we must endure. But look how he blesses! Look how he plans things out in a way that we can endure our experiences. As I write this, I feel so much gratitude for my Heavenly Father who helps me during the difficult time. And I know that He helps all of us to carry our burdens if we will just look to Him for strength.

Someday

It is hard to express what it is like to live in a body that doesn't work. It used to work, it used to do amazing things. Then, suddenly, one day you wake up and its all been taken from you.

I love the mornings, especially the moments before I move, because I can believe that today will be the day I will recover. Today when I walk down the stairs my body will not ache and I will have enough strength to make breakfast. Today I will be able to be strong enough to take my two young boys to the library and let them experience story time like I used to do with my oldest son when he was little.  Today I will be able to walk my 4 year old into his preschool classroom. But by the time I reach the bottom of the stairs and say good morning to my sweet family, I can feel my body saying "No, not today." But someday. Someday a new day will come and I will be all those things again. 

In My Son's Eyes

Perhaps the best way to start is through Benjamin's story.  Benjamin is now 8 years old and in the 2nd grade.  His school had a Reflections contest through the PTA and he decided to write about his experience with his mom. I decided if he was brave enough to talk about it, so could I. Here is our story as told by him.

 

                                       My Mom and I

I want to tell you a story about my mother and I. We have always been very, very, great friends.  We play lots of games together. We make forts, go on hikes, or just jump on the trampoline together. In the fall, we jump in leaves. Winter, we just stay inside and play board games. In the spring, we go on walks. In the summer, we go swimming. You get it, mom and son playing and having good times.

Then something really horrible happened. My mom got sick. Really sick. At first, I thought the sickness would last for a week. Then I thought it would be for a month. Next I started to feel scared because it wasn’t going away.

Then there were changes in the house. Sometimes my dad had to miss work to take care of my mom. My brothers and I had to help my mom with lots of stuff, like getting her food and water. The sickness just kept on going. Suddenly, my mom couldn’t jump on the trampoline. No more grocery shopping together, no more fun.

 I felt miserable and wondered what in the world I could do when I am bored. Sometimes I didn’t know what to do but lay down on the ground and wait until my mother needed anything. Sometimes I felt like maybe my mom would have this sickness forever and never get better.

The doctor said that my mom should not walk and go in a wheelchair or not go to the grocery store. The first time we went to the store, my mom was very embarrassed. I really helped her by cheering her up. I said “Don’t be embarrassed. Riding in a wheelchair is fun! Nathan and I can push you!” That helped my mom feel better.

We also made a “What My Mom Can Do” list. My mom and I put stuff on the list like “talking on the phone, being a friend, hugging, teaching Benjamin math.” We taped the list on the refrigerator. So on some of the days I could go to the refrigerator, pull the list off, and show my mom one of the things we could do. It made me feel better that I could do something with my mom and not just get her stuff while she lay on the couch.

She’s been sick for over a year. I’ve been sad and then I think of my mom and how I can still have fun and even though she is sick, it is still okay. Sometimes my mom has better days. Things are different, but still great. I have also learned that even though my mom is sick, it’s not the worst thing ever. It’s not like it makes you so you can only sit around each day. We can still talk, laugh, play board games, and watch shows together and snuggle.

I’ve also found out that my mom being sick made it so we can have extra family time. I know a couple of people who don’t spend a lot of time with their children. Either going to the mall or just not being there as often. I like it that my mom is always near and I can always go and talk to her.

I’ve also learned that if I walked up to a person, and that person had a medical problem, or was in a wheelchair, or couldn’t breath as well as other people, it doesn’t matter what  that person looks like. What matters is what kind of person he is.

The true purpose of my story is that you have to learn from difficulties. I know that everybody has difficulties. We need to fight back with persistence. Persistence is sort of like the medicine for your trial. Don’t give up. Keep on going. You can get through your difficulty no matter how hard that trial is. Your persistence will win.

Sharing my story

I'm not a blogger. I don't read other people's blogs. But I'm a talker (as all of my teachers growing up would attest to!) Sometimes things happen in your life that feel too hard to share. Sometimes you realize that if you share, then perhaps it won't be so hard.

I've been asked to start a blog to share my story.  This will be addressed to my special friends who know me, love me, and understand who I am. I am Emily and at the age of 33 I became crippled with a debilitating illness.