Here I go again...another diet

So here I go again, another diet…I mean “life style change.”  Will it work?  Will I find happiness as the number on the scale decreases?  Will I become a better me?

For as long as I can remember I have been striving to be a thinner, better me.  I picture what I will look like and how life will be better.  I see friends and co-workers meeting their weight loss goals and seek their advice.  I work out with a trainer and join competitions and programs, all in an effort to find the thinner, better version of me.

Do I really think happiness can be found in a size 6 jean?  Will I be funnier?  Will people like me more?  Will be kinder and more loving?  Will I be….???? 

When I look at my friends, most who look similar to me, I don’t see their weight, their gray hair, or any of their other imperfections.  I see the people who love me, who make me laugh, who make me think about life and how to live it better.  I don’t pick my friends by their pants size or any other superficial trait, so why do I put so much pressure on myself?  Why cant I find happiness as I am.  I tell my daughter to love herself as she is because she is perfect.  She is how God made her, so why am I such a hypocrite when it comes to me? 

I could blame the unrealistic expectations I see Hollywood and the media portraying but to be honest, I don’t look at people like Jennifer Aniston or Angelina Jolie as role models.  I am smart enough to know that they have access to programs, staff, etc. that I don’t. I also know their pictures are modified to make them look like perfection.  Rather, I look at my peers and see what I want to look like.  I see the woman who has had five babies and wears a size 2.  I see the mom that works full time and never has a hair out place and is able to wear the trendy cloths without muffin top syndrome (fat hanging over her waist line).  These are the people I see and envy.

My husband tells me weekly how beautiful and sexy I am.  I am thankful he thinks so but I don’t.  I know it hurts his feelings when I disagree and that his opinion is not enough.  I try to see myself through his eyes and find comfort and peace with his opinion, but then I see a picture of myself.  I see my cubby body and his words disappear and my insecurities scream all that I lack. 

As I was sitting in church this week, frustrated by what the scale said earlier, I realized that I was desiring a thinner version of me more than God.  I spent more time thinking about and imagining a thinner me than I spent praying or reading the Bible.  I somehow made my body image bigger than God.  I didn’t think I could feel worse but when I realized that I had lost my perspective and made my diet my God, I did.  Not only was I losing the battle with my weight but I was losing the battle to keep God my #1 priority.  This was not acceptable!!!

So today I refocus on what’s important and pray that the mean things I say to myself about my waist line, thighs and chubby face will be silenced.    I will continue to work towards better eating habits because I am concerned with diabetes and heart disease but I will NOT diet, I will not buy/by into one more program and I will NOT allow my weight to be my focus.  God, Husband and Kids – those are my focus. 

(If you happen to read this blog, please don’t comment on how you think I am fine the way I am or with recommendations on how to lose weight, as that is not the intent of this blog.   To anyone who introduced me to a diet program, I didnt write this to offend you and the decision to buy into your program was by my choosing; you couldnt have known that I lost my perspective.  Thank you)

Dear Daughter:

Dear Daughter:

I wish for one moment you could see yourself through my eyes.  Then you would realize how amazing, beautiful, talented, and loved you are.  You would see the qualities that make you unique, special and precious.  You wouldn't see all the mean untruths the world tells you about yourself.  You wouldn't worry about whether or not you are asked to sit at the cool kids’ table. 

Watching you navigate this world, at times, is painful and a lot harder than I ever imagined.  You are dealing with so many things and have matured a lot faster than most kids your age.  I never knew I could physically feel someone else’s pain, but as I hold you when you cry I physically hurt.    I feel the hurt others have caused, whether that be intentional or by accident.  I cry when you cry and sometimes when you aren't watching. I don’t tell you this to make you feel guilty or so you won’t share your problems with me but rather I tell you so you know how much I care.  I may not have the answers to your questions or the best advice for your problems, but my love is genuine and deep.  Even if I can’t fix your problems, I hope my genuine love makes facing them easier. 

Please don’t believe the lies the world is telling you, whether those lies come from magazines, TV shows or friends.  If you ever want to know your worth, come to me.  I will remind you that you are a child of God.  I will remind you that I love you more today than I did yesterday and I will show you all the good that exist in you.  Does this mean I am blind to your faults?  No.  It does mean that those faults are nothing compared to the good in you.  The love you have for people and God and your sense of humor and ability to be silly are what make you so incredible.  Your outside beauty is no match for the beauty that lies within your heart.  When I tell you are beautiful, I hope you know I mean your physical beautiful as well as your inner beauty. 

Don’t change!  Don’t let the world change who you are or make you feel inadequate.  Don’t turn yourself inside out to fit in.  Be you!  Be you 100% of the time!!  Not everyone will like you, which is their loss.  I have spent most of my life trying to fit in, trying to sit at the cool kids table and be accepted.  To this day, I find myself on the outside of those circles.  It is only within the last few months I have been able to settle in to who I am and put aside the opinions of others.  I am who I am and being someone am not is harder than dealing with rejection from those who don’t enjoy my company.  Please don’t take 30+ years to figure this out like I did.

I watch you every day and every day I thank God for letting me be your mom.  I know people say that all the time, but it’s true.  I am beyond thankful that each day I wake up and get to be your mom.  I don’t know what I did to deserve you.  In fact, am sure I don’t deserve you but by the grace of God I am your mom. 

When you are lonely, sad, feeling rejected, etc. please remember this:  You are perfect just as you are.  You are loved.  You are an inspiration to many.  You are amazing, talented and beautiful.  Most importantly, you are God’s child.  You are a piece of Him and if He is as amazing as we know He is, than so must you be.  Embrace who you and embrace the gift of life.

Love,

Mom

The Internal Struggle - The World vs God

Anger, frustration, spite – these are normal emotional responses when someone hurts, offends or disrespects us.  What’s not normal, is responding with kindness, love and compassion. 

Matthew 5:39-48:

39 But I say to you, do not resist an evil person; but whoever slaps you on your right cheek, turn the other to him also. 40“If anyone wants to sue you and take your shirt, let him have your coat also. 41“Whoever forces you to go one mile, go with him two. 42“Give to him who asks of you, and do not turn away from him who wants to borrow from you.

      43“You have heard that it was said, ‘YOU SHALL LOVE YOUR NEIGHBOR and hate your enemy.’ 44“But I say to you, love your enemies and pray for those who persecute you, 45so that you may be sons of your Father who is in heaven; for He causes His sun to rise on the evil and the good, and sends rain on the righteous and the unrighteous. 46“For if you love those who love you, what reward do you have? Do not even the tax collectors do the same? 47“If you greet only your brothers, what more are you doing than others? Do not even the Gentiles do the same? 48“Therefore you are to be perfect, as your heavenly Father is perfect.

Does God really want us to respond with kindness when someone spreads lies, takes advantage of us, or hurts our feelings?  Yes and NO.  Yes he wants us to be kind but if i read the above scripture right, he wants us to go BEYOND kindness, he wants us to “go the extra mile.”  God calls us to love everyone, at all times. 

Over the last month I have struggled with this more than I care to share.  Someone used a social media site to attack me without naming me.  I was quiet at first.  Not because I was being the “bigger” person, but because I don’t like confrontation.  As the day went on, and the comments were made, I felt as if I needed to defend myself.  As I wrote my response, I felt an internal struggle start.  I knew I would regret it if I posted it, but I didn't start it, I was only defending myself.  I felt as if the person needed to know how I felt, why I did what I did, etc.  Did I speak lies? No, but I wasn't nice.  I didn't turn the other cheek.  I didn't respond as God would have wanted me to. 

The moment I hit post, I regretted it.  It was unlike me to be so bold or to stand-up for myself.  I had hoped that I would have felt relieved but I didn't.  I felt terrible.  I am firm believer in not ranting or attacking people on social media sites.  It is better to go to the person directly and address whatever issue(s) you have or do what I do, say nothing and stew about it quietly.  I did exactly what I hate.  I attacked someone, was unkind and I did it on Facebook.

A few of my friends read the post and patted me on my back.  They were surprised by my response and supported my decision to finally stand up for myself.  So the internal struggle continued.  Was I wrong?  If I wasn't, why did I feel so terrible?  As the hours went on and I pondered what had happened, I couldn't get the voice in my head to stop telling me how wrong I was.  I kept justifying my actions and words but the voice was persistent. 

I prayed that night for God’s forgiveness and grace.  I didn't deserve either but I desperately wanted them.  I confessed to him all my wrong doings and asked for peace over the situation.  As I woke the next day the pit in my stomach was still there and I “heard” God telling me how to handle this situation.  I needed to apologize.  But why?  I didn't want to!  I wasn't sorry for what I said, but I was sorry for the way I said it and where I said it.  Either way, I knew I had to apologize because I responded as the world would respond. I didn't respond as God wanted me to respond.  I didn't turn the other cheek.  I didn't show Gods love.  If I am a child of God, I need to act as one.  I knew if I ignored Gods direction I would be miserable.  I would continue to be filled with anger, distress and guilt.  So I did the thing I didn't want to do and I apologized. 

I am thankful God is willing to direct me and correct me when I am wrong.  I need to learn to listen to His direction in the midst of my actions, rather than after the fact.  If I claim to be a Christian, I should achieve to be Christ like.  I need to love like Christ, to treat others like Christ would and to turn the other cheek.  Far too often we listen to the world and follow their example, but we don’t answer to the world, we answer to God.  While the world may tell us its okay to act a certain way, say certain things, etc. we must remember who we answer to and His desires and expectations.

Guilt and Peace

The other day I read a Batten mom’s status on Facebook and I gasped.  Why?  I was surprised, rather shocked at what she said.  It was brave, it was honest and it was something I have thought but never said for fear of judgment.  (Okay, I said it to one person and I think they understood what I meant.  I hope).  

  

I quote, “A guilty feeling comes when we look forward to God calling our daughter home.”  I have thought about Kate’s homecoming and I feel happy for her.  I look forward to her going home to heaven.  The minute I think this guilt pours in like hurricane.  My heart breaks, my fears turn my path dark and I question if my feelings make me evil.  How can I feel happy about her death? 

I know if/when Kate passes away I will feel pain like I have never felt before.  NOTHING in this life can prepare me for the pain, devastation, emptiness, and sorrow I will feel.  I know I will never get over the pain of saying good bye to her.  I still pray each day, several times a day that I never know this pain.  I pray for a miracle!  But when I think about Kate going home, meeting Jesus, and dancing in the presence of God, I smile.  I picture her being healthy, happy, and enjoying life the way all children should.  I hear her voice and giggles.  I even hear her sassy personality.  This makes me smile.  This makes me happy.  This is what allows me to look forward to life without her.  Even now, as I type that sentence, the guilt over powers me and I have to remind myself that I am not happy about life without her.  Rather I am happy for the life she will have without us. 

My goal in life is to make it home to heaven.  I have said it hundreds of times – “take me, am ready.”  This earth is temporary.  The things on this earth are temporary.  I want to see my permanent home and be in the most glorious, peaceful, and holy place.     Even more than that, I want to meet my savior face-to-face and be in His presence.  If this is the goal I have for myself and I look forward to it, why wouldn't I want this for my family and friends and look forward to it for them as well? 

I cherish each day with Lauren, Kate and Brock.  I am thankful for each day we wake up together and enjoy the mundane things of life, along with the exciting things.  I don’t take one day for granted!  And I look forward to all of us finding our way home to heaven.  Going forward I will look forward to it without guilt.  Rather I will feel peace over the idea of us being a family in Heaven.

Staring, teaching and accepting

Over the weekend we went to Washington DC.  Our vacations usually consist of going to the Batten conference, but this year the conference is in Columbus, Ohio, so we decided to take a “real” family vacation.  We each had one thing on our list that we really wanted to do but other than that we were excited about not being on a schedule, not waking up to an alarm, and just hanging out.  On our last day in DC we decided to go to the Smithsonian Zoo. The outside temperature was nice so we expected to see a lot of the animals.  However, there was something else more interesting at the zoo than the animals.

From the time we entered the zoo it was apparent that Kate was more interesting than the pandas, elephants and tigers.  We couldn’t go more than two minutes without someone staring at her.  We are use to young kids looking at Kate and saying things like “what’s wrong with her”, “why is she in that (wheelchair)”, etc.  What I am not use to are adults staring at her.  Brock and I both said we should put a note on Kate that read “I am a person, not an attraction at the zoo.”  Within an hour of entering the zoo we left.  We left frustrated, mad and hurt. 

I understand seeing a child in a wheelchair isn’t a daily occurrence, but when did we as a society forget that it is rude to stare?   I understand why children gaze, but I don’t understand why adults are so fascinated by Kate and children like her.  Honestly, I think anyone over the age of 8 should know better than to stare at someone, regardless of the reason why.  By the age of 8 they have attended anti-bullying assemblies at school (which includes bullying children due to disabilities), and have seen TV shows that include disabled children, such as Sesame Street, Little Bill, etc.  

You would think by now we would be use to people staring at Kate and some days we handle it well, but other days, it is all I can do to not scream at people when I see their eyes fixated on her.  How can we teach people to be polite and not stare?  In my opinion, it starts at home.

1. Parents need to teach their kids that staring at someone is rude.  They need to teach their kids that people are different.  Some people are tall, others are short; some are skinny, others are not; some walk with their legs, while others have prosthetics or use a wheelchair.  You don’t need a special moment to teach this common courtesy.  There are children books that show diverse characters, TV shows, etc.  When you are walking the grocery store, at church or just out and about, you can take a moment to show how beautiful people are and how their differences make them special.  

2. When a child says something like “what’s wrong with her”, don’t get embarrassed and try to shut them up.   Rather, answer the question.  Make it a teachable moment.  While you are at it, show them how they are more alike than different.  Say something like “look at her shirt, it is pretty?”  I remember walking through a NYC hospital with Kate.  We were staying for a few days so we had suitcases.  A small child, probably not even 3, said to her mom, “what’s that?”.  Rather than the mom answering the question honestly, she pulled her daughter closer to her and said “those are suitcases.”  I don’t know who she was trying to fool, us or herself.  We both knew the daughter was asking about Kate and her chair.  She wasted a moment to teach her daughter.  She didn’t do her daughter or us any favors by not answering the girl’s question.  I am not offended when someone inquires about Kate.  I would rather a child ask than stare.  I am offended when a parent doesn’t answer the question and/or ignores the question.

3. Adults and older kids, I am offended every time you stare.  You know better.  I have a hard time believing Kate is the first person you have seen in a wheelchair.  If you are curious about Kate, please ask.  Come up to me and say “Your daughter reminds me of…  Can I ask about your daughter?”  or “your daughter is beautiful.  What does your daughter have?”  (BUT DONT ask me what is wrong with her.  That’s offensive.  Nothing is wrong with her.  She is perfect.)  I will gladly share with you what disease Kate has, direct you to websites, etc.  Awareness is key!

I beg of you, stop staring and start educating your kids on people like Kate.  

While am at, please stop using the word retarded to describe things and people that aren’t.  I know I have posted on this before but people, including friends, still say things like “that is so retarded” or “they are such a ‘tard.”  It hurts, its offensive and it makes me want to scream in your face.  I am over asking people to politely to stop using the word in front of me.  I will no longer be silent when you say it in front of me.    I will be kind but I will ask you to not say it.  

Learn as much as you can while you are young, since life becomes too busy later. ~Dana Stewart Scott

Just how old am I?

It’s been a while since I wrote.  I thought about writing several times, but most of my free time has been spent researching colleges, spending time with my family, taking care of the house or sleeping; mostly, researching schools.  Who knew it could be so exhausting looking for a school, researching programs, etc.  I started looking at one degree program and one school, and found myself looking into several schools for another degree program.  All that, and I find myself applying to the original school and original degree program I started with.  Gesh… anyways, I am excited to go back to school this fall, I hope, for a Bachelor’s degree in Biblical Studies from Moody Bible Institute.  My hope is that I will 1. Grow closer to God, 2. Learn the bible in an amazing, deep and new way and 3. Learn to speak on different topics, thus growing my speaking “career”. 

All this to say, I took a break, but am back and hope to write at least once a week.  Are the two people who were reading my blog still interested?  LOL

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The other day I was shopping with my sister-in-law, Teresa, and our girls at Kohl’s.  This happens to be part of regular Sunday routine.  We don’t always buy something but it seems like someone always needs something from Kohl’s.  Whether it is for us, a wedding, a birthday or wedding/baby shower, we always find ourselves roaming Kohl’s.  On this particular Sunday, Teresa was looking for sandals and found a pair she liked.  They weren’t that cute but she was impressed with how comfortable they felt.  So I tried a pair on and instantly fell in love with them.  UNTIL I heard the words, “wow, those have great arch support.”   I looked around to see who said them. Felt my body quiver. And realized, I said those words AND I meant them.  How could this be? When did I get this old?  That has never been a concern of mine.  I am a firm believer in wearing cheap, cute shoes, even if it means within an hour my feet are deformed and in pain.  I don’t buy shoes because they are practical, provide support and comfort.  Well, that was until June 1, 2014.

How did this happen?  When did I become “old”?  I don’t feel old.  In fact, I feel like I did when I graduated high school.  I often forget how old I am until I see myself in the mirror (oh, the gray hair), say my kids’ ages out loud or think about the fact that I graduated 18 years ago.  (Okay, I know some of you may be thinking, “she’s not old” and I know am not “old” but I am “old” when phrases my mom would say slip out of my mouth.)   I don’t know how this happened or who allowed it to happen, but am asking, no I am demanding that time slow down! 

I don’t get upset by my birthday or the thought of being a year older.  Rather, I get anxious when it is my kids’ turn to blow out the candle.  Their birthdays affect me a lot more than my own do.  Don’t get me wrong, I am happy to celebrate their birthdays, but I know with each passing year, we are one closer to Lauren driving, dating, going away to college, getting married, etc.  And Kate’s birthday brings on a whole different set of anxiety.  I just want to hold onto them for as long as possible. 

What I have learned about getting older, thanks to Batten disease and cancer (Kate and Dylan), is to be thankful for each day.  Whether the day is great or horrible, it is another chance to be with those I love.  I know we have all heard “live like today is your last day”, “live for today because tomorrow isn’t promised”, etc.   Sometimes we hear sayings like these and we think to ourselves for a moment, “that is so true” and then go on with our day.  However, in our house, we know these sayings to be true and we try embracing each day with the mindset that the new day is a gift.  While some find birthdays to be unimportant or even a burden, I try to focus on the gift that they are.  The marking of an important, joyful day when the greatest gift, life, was given to us.  Knowing that tomorrow isn’t promised helps us to celebrate the victory of another year!

So whether you are old, young or somewhere in between, embrace and celebrate each new day and the challenges and joys that come with each new day, week, month and year!

And yes, I bought the sandals with the great arch support.  Next for me, prunes…

What’s it really like?

I look at my life and at times I don’t recognize it.  The life I imagine when growing up looks nothing like my reality.  Very few of the dreams I had have come true.  This may sound sad, but it isn’t.  Some dreams are better than my reality but in many cases my reality is better than the dreams I had.  That’s what I try to focus on each day.  I don’t consider myself to be an optimist or a pessimist; I consider myself to be a realist.   But I do try to see the good and be thankful for all of our blessings.

Sometimes I wonder what our lives looks like to those outside of our family.  I hear from time to time “you are amazing”, “I don’t know how you do it”, “you’re an inspiration”, etc.  I wonder what people see in me to say such nice things.  I can assure you, I am not amazing or inspiring and I know you would handle this situation in a similar manner if it was your life.  I don’t feel inspiring or amazing.  I am just a wife, mom, daughter, friend, etc. making the best out of an incredibly sad and painful situation. 

   

I have had people tell me to that I need to be more transparent about our struggles so they know how to pray for us or how to help us.  Why do I always end conversation or updates on Kate on a positive note?  To be honest, am not sure why.  It’s just how I do it.  Maybe its because I know there are people with harder struggles.  Maybe its because I hate leaving people with a negative impression and/or with sadness.  Maybe its because our story is conversation killer so sharing the joys and positive news makes everyone more comfortable. 

Tonight I will share with you some of the things we don’t share.  I will share with you the emotions that I feel from time to time, that honestly make me ashamed of myself.  Please no judgment or hateful comments.  I am opening up in a way I rarely do. 

Some days I feel like I am in a black hole.  I want to run and hide.  I want to scream at the world and transfer some of my hurt and fears onto something else.  Some days it is all I can do to stand in a room filled with people and not fall to my knees in tears.  I find it hard to watch kids Kate age participate in sports, dance, school, play dates, etc. because I am reminded of all the things Kate can’t do.  I hate going to IEP meetings and hearing the goals the therapist and teachers have for the next year.  They are so simple and appropriate for her condition, but once again, scream in my face all the abilities that Kate has lost due to her illness.  I struggle with celebrating a new life because I know that the new, precious baby will develop skills by the age of 6 months that surpass Kate’s abilities.  Am not proud of these feelings, but they are real. 

A few weeks ago I went to Meijers to get Easter candy and a small gift for each of the girls.  I was in a good mood when I left the house but by the time I was done it was all I could do to not cry in the check-out lane.  As I surveyed the candy options I struggled to find something Kate would enjoy.  Since she cant eat by mouth my options are limited.  I settled on suckers, like I always do.  I then searched and searched for a meaningful gift for her.  The soundtrack to Frozen and ????  Shopping for Lauren was easy.  It should be easy for Kate too.  I know Easter isn’t about candy and gifts.  I know Kate doesn’t care if her basket is filled suckers and gifts, but I care.  I care because once again the disease wins.  It has taken Kate’s ability to walk, talk, see, eat, learn, play, laugh, sing, and so on.  It has taken so much from her and us.  It shouldn’t be allowed to take the joy out of holidays.  But it does.  This disease has stolen so much from us.  (as I write this I struggle to tell you all the amazing things this disease has given us).  I left Meijer and felt as if I had my emotions in check once I loaded the car with the items I bought, so I headed to Five Guys.  I placed my order and as I watched the employees do their thing my emotions took over.  As I stood by one of the tables the tears flowed.  There was no stopping them.   I was so relieved when my order was up so I could cry alone in my car, which is often where I find myself crying. 

Then there are moments like yesterday, where nothing in particular happens but the feelings of sadness, fear, and loneliness hit me like a truck and came unexpectedly.  Nothing set this off, it just happened.  I allow myself to feel these emotions for a moment but never for too long.  I think it is important to acknowledge the feelings but because I have a family to take care of, an employer that depends on me to do my job, etc. I don’t allow myself to dwell in those emotions for too long.

Amazing I am not.  Inspiring I am not.   Mother and wife making the best out the life she and her family is living?  Yes!  I appreciate the compliment but if you knew how dark and sad some of my days are, you probably wouldn’t think that about me. 

Perhaps, through writing this I have determined why I end most of my conversations and updates on a positive note.  It is easier to focus on the good than the bad.  It brings joy to my heart to see the gifts we have and the blessings we enjoy. 

So for those who wonder what its like to be us or have asked me to be more open and transparent, this is a small glimpse into the darker side of the disease.  Not pretty, but real.  I hope you will join us in seeing the blessings and not the sadness.

Grief, regret and remembering

It would seem with the loss of my brother, dad, and grandparents that I would be well versed in the grieving process and how to comfort those who are hurting.  However, I have learned more about grieving in the last four months than I have in the last 36 years.  Watching my sister-in-law and brother-in-law grieve the loss of their son, my nephew, Dylan, has made me realize how consuming grief is on the body, the mind and the spirit. 

Tomorrow, April 17, marks the 8^th anniversary of my brother’s death.  As I look back over the funeral and months that followed, I realize that I failed as daughter to help my mother through the worst days of her life.  I didn’t recognize how deep her grief was.  You ask yourself “how couldn’t I see it or know it”?  By the very nature of the fact that my mom buried a child I should have known.  Maybe I didn’t realize it because I was grieving.  Maybe it was because there was a sense of relief that his fight in life was over, or maybe it was because we didn’t share the pain of the loss as a family.  Yes, we gathered and planned his funeral, we cried together at the services, and we shared a meal at my mom’s house after the funeral.  But we rarely spoke of it afterwards.  I, in my selfish, naive state didn’t call my mom to check on her daily like I should have.  When I saw her she was pulled together and able to carry on normal conversations.  Perhaps this led me to believe that she was doing well.  Or maybe the truth is it hurt me to see her hurting so I avoided the hard conversations.  Or perhaps, I wanted to distract her from the hurt so I kept quiet in the hopes that if we talked about something different her mind and heart would have a moment to heal and think about something different.  Whatever the reason may be, I now realize that I handled it wrong.  I look back, with the knowledge I have today, and I am overwhelmed with guilt and sadness that I wasn’t there for my mom the way a daughter should be.    Like I said, I have learned a lot about grief in the last four months and if I could do it again, while I wouldn’t want to relive those days again, I would do it very differently. 

As I remember my brother tomorrow, I wont go visit his grave, because I don’t visit cemeteries.  Bodies may be laid to rest there, but memories, love and the bonds people create are not found in a cemeteries.  I carry my brother with me in my heart and mind.  I dont say this to offend those that visit graveyards; we all have our own way of grieving and showing our love.  My dad died when I was 12 and his body was laid to rest in Iowa, as were his parents but I was in Indiana.  Therefore, I didn’t grow up visiting cemeteries. 

One of the main things I have learned about grieving is that those who have “lost” someone they love don’t want them to be forgotten.  They want you to share your memories, or if you see something that reminds you of them, say it out loud.  Yes it may cause a moment or two of sadness as they quietly reminisce or talk, but the pain of your silence is worse.  So this blog, I dedicate to my mom.  I hope she knows each day I look at the picture of Brian and remember who he was and miss him.  He isn’t forgotten.  His life had value and impacted many.

This is how I remember my brother, Brian:

My brother was one of the funniest guys I knew.  His sense of humor, to some, may have seemed immature but to me it was a carefree and silly humor.  I remember our last day together.  It was Easter Sunday, and we were at my mom’s house.  Brian brought Logan over and the kids had an egg hunt.  I remember sitting in the kitchen with my mom and brother and we laughed and laughed together.  I am forever grateful that our last day together was fun and relaxing.

When my brother and I were younger we were great friends.  We played GI Joe, tag, and Legos together.  Brian was my first friend.  We didn’t always get along but I knew he had my back.

Brian was an amazing artist.  His ability to draw anything he saw amazed me.  I cant draw a stick figure, so to watch him effortlessly draw portraits, etc. astounded me.   I wish I would have saved some of his drawings.  Brian also loved music.  I remember him playing his drums for hours.  He would have loved to have played in a band. 

Brian gave me away at my wedding.  I remember being so nervous when I asked him and so excited when he said he would do it.  While Brian was not always kind to me after my dad’s death, I knew when push came to shove, he was my defender.  He would have protected me from anyone that treated me unkind.  I remember at the reception Brian and Heath dancing to Cotton I Joe around the hog trough.  To this day it is one of the funniest things I have ever seen.  Not because they couldn’t dance, but because they were having fun.  Their dancing was pure entertainment.

As a kid I remember going sledding with my brother.  There was a hill behind our neighbor’s house and we would walk to it together.  I probably would’ve been too scared to go down the hill if my brother wasn’t by my side.  More than anything I wanted Brian to think I was cool and brave. 

For those that only knew Brian when he was drunk or high missed out on knowing a guy that was filled with love, who was smart, compassionate, funny, loyal and gifted.   While I am thankful that Brian no longer has to fight his addictions and the pain of this world, I mourn the guy who I once called friend, protector, and brother.  On Thursday I will grieve not only for my loss but also for the loss my mom, his wife, and his children.  I will grieve what was, what should be and what could’ve been.   

Rest in peace Brian.  We love you and miss you.  Until we are together again…

The Four of Us

My First Friend

Sharing a Dance with my Brother

Our Small Family

Brian's Family: Kristi, Courtney and Logan (not pictured, Katie)

Celebrating Christmas

The Last Picture Taken of Brian (during the egg hunt)

One of my Favorite Pictures of Brian

If Love Could Have Saved You...

I read on Facebook today “if love could have saved, you would have lived forever” and I thought, how true is that?  If the love could save those we love the most, we wouldn’t have to say good-bye and know the pain of losing someone.  If love was enough, my dad, my brother, Dylan and so many others would still be here.  If love was enough, I wouldn’t worry about saying good-bye to Kate.  Love can do so many things, but it cant prevent death. 

However, the love of our savior can save us!  It doesn’t stop us from leaving this place, leaving our bodies or leaving those we love, but it does allow us to see them again, in our new bodies, in place that has more joy, peace and fulfillment than this place we call earth.  This place, our bodies, etc. are temporary.  Yes it hurts, to say it lightly, when we have to say good-bye and it is hard to find our footing, but we have something to look forward to.  We have the knowledge and joy of knowing that one day we will be reunited with those we love. 

How exciting is that?  Think of all the things you have said good-bye to, which you will never see again.  Friendships that have ended, jobs that you have left, homes that you don’t live in anymore, etc.  Those good-byes are permanent and you had to adjust to a new normal.  Saying good-bye to your spouse, child, sibling, parent, etc. due to death may seem permanent, but there is hope in eternity.  There is hope is seeing those you love once again as you enter the gates of heaven.  Knowing this, I hope, brings you joy, peace and comfort.  I know it helps me deal with my grief.  Knowing that one day I will be reunited with those that have gone before me brings me peace, calmness, hope, joy, and eagerness. 

How can we be certain that we are going to heaven?  It is simple!  All you have to do is profess that Jesus is son of God, he came to save us from our sins, died on the cross and rose again and is seated in Heaven and ask him to come into your heart.  Simple!  You just have to believe.  You just need faith the size of mustard seed.  I wish all of life was this easy!  Life may not be easy but it so easy to believe in a compassionate, all knowing, wonderful God, who wants nothing but the best for you and wants you to spend eternity with Him.

So, next time I read, “if love could have saved you, you would have lived forever”, I wont think of those that we mourn, rather I will say, Love is Enough and it does Save us! 

Happy Birthday Lauren

She made me a mom.  She made me see the world through new eyes.  She made me rethink all the things I thought I knew.  She challenges me to be a better person; more compassionate and patient.  She allows me to be childlike and silly.  It’s so hard to believe that she is now 11.  How did this happen so fast?  After 11 years I am still amazed at the impact Lauren has had on my life. 

Lauren and I are a lot alike.  We look like each other, her mannerisms are similar to mine and how she processes situations and her emotions is similar to how I process them.  She is a mini-me, but so much better!!  She has so many qualities that I wish I had.  She is out-going, adventurous, and confident in who she is.  She is able to be silly and has an amazing sense of humor.  She can wake up in the morning, put on her camo hunting cloths and hangout in a tree stand, then come home and get all dressed up and do her hair and make-up (chapstick and clear mascara since shes only 11). 

I wish Lauren could see herself the way I see her.  She would see how brave, amazing, and lovely she is.  I know at times she feels like she blends into the wall because so much of our time is focused on Kate and her needs, but I hope she knows, without a doubt, how much we love her and how lucky we are to have her as our daughter.  I am forever thankful to God for allowing me to be Lauren’s mom. 

As we celebrated Laurens 11^th birthday this past weekend, I reflected on the past 11 years and the different stages of Lauren’s life.  It has been so much fun to watch her grown, develop her personality, and learn.  Lauren is all around amazing and I cant wait to see what the next 11 years (and more) bring.

Happy Birthday Lauren!

Hope is not Faith

Hope is not faith.  These words keep ringing in my ear.  My pastor said these words a few weeks ago and they stopped me in my tracks.  How many times have I said “I know Kate will be healed and I hope its on earth, not in heaven” or “am a realist, and know that Kate’s healing may not happen until she is in the arms of Jesus”?  How is it that I could say in one breath that I believed in Kate’s healing and the next say I hope for it?  Either I have faith or I have hope. 

When I heard those words, I knew that I needed to think about what I was saying when praying vs what I was saying in conversation or thinking.   Faith is believing what we cant see and while Kate doesn’t looked healed, I believe she will be.  Faith the size of a mustard seed is all I need and I have that!   Over the last few weeks I have been focused on my faith and truly believing, not just giving lip service.  I didn’t think that was what I was doing until I heard our pastor say hope is not faith.  It was then that I realized that I was saying one thing, and believing another thing.  I wasnt doubting God's ability, but wasnt placing all my trust in Him.  Why?  Maybe to protect my heart?  Maybe so I didn’t sound like a crazy person for being hyper religious?  Whatever the reason, my thinking and believing have been transformed. I am praying with the belief of healing.   

What are you praying for?  What are you believing God can and will do?  Whatever it is you are praying for, pray with the full confidence that God is capable.  Don’t doubt his abilities or desires. 

Matthew 14:31 NIV Immediately Jesus reached out his hand and caught him. "You of little faith," he said, "why did you doubt?

Matthew 17:20 NIV He replied, "Because you have so little faith. I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you."

2 Corinthians 5:7 NIV We live by faith, not by sight.


ADDITIONAL THOUGHTS:
After I posted this another batten parent and I discussed the whether or not hope can be faith.  When I say discuss, I mean we shared a few thoughts on Facebook.  I wanted to include what I said about hope vs faith, because my thoughts may not have been as clear as I had hoped in the above blog.  

I agree hope can be faith but also think hope can diminish your faith. I know what I mean, but may struggle to explain it. I will give it a try - hope in something can mean you also have faith in it. However, sometimes, your hope may be a sign of lack of trust or confidence. When I was praying for healing but following it w "I hope God heals her" I wasn't showing faith. My hope took away from faith. Maybe it depends on the order of your thoughts or belief that makes the biggest difference? If your hope leads to faith, then your confidence in your request is solid but if your hope comes after faith, then you don't have a 100% confidence in what you desire or believe to be possible ? Hope that makes sense.

Happiness vs. Batten disease – which wins?

Happiness…  What does it mean?  How does one obtain happiness?  The definition of happy is “feeling or showing pleasure or contentment.”  Happiness is the state of being happy.   Why do so many people fight happiness?  Why do so many people allow anger, jealousy, and bitterness take over their life?  Why are some people only “happy” if they have something to be unhappy about?

In the last four years I have been asked why we as a family are happy.  How do we maintain happiness in the midst our struggles? 

Happiness vs. Batten disease – which wins?

I remember the day we got the diagnosis for our daughter Kate.  Happiness was nowhere to be found.  Happiness fled our home and darkness set in for a few weeks.  Living, breathing, and merely existing became a chore.  Tears were more common than smiles.  All around us was darkness, fear, and hopelessness.   We could have stayed in this state of mind but we CHOSE otherwise.  Am I saying happiness is a choice?  Yes, that is what I am saying. 

(BUT before we go any further, let me say loud and clear that I am not saying depression is a choice. In fact, I believe just the opposite.  Depression is a medical condition that requires medical attention, whether that be through counseling, medication or both.  Our country needs to remove the shame from mental illness and allow those with it to be open and unashamed.  This blog is about those who are healthy mentally yet they elect to be filled with anger, sadness and other dark emotions.)

We chose to find happiness and a way to live again.  Kate had been given a death sentence but the truth is she was and is a live.  We can hold her, kiss her, and see her.  How many years will she live?  I wish I knew.  However, I what knew once the darkness started to move, and continue to focus on, is that she is alive today.  We can chose to be miserable and see only death or we can chose to live, be happy and be thankful for today.  Batten disease may claim her life, but it wont claim the hours and days while she is living.  It wont claim our happiness.  We chose happiness because anger, sadness and bitterness doesn’t bring quality of life but happiness, love and a positive attitude do. 

More than happiness, I want joy.  If happiness is a choice, isn’t joy.  No!  Joy is a gift from God.  Happiness is like a fair weather friend; happiness comes and goes as life throws junk your way.  What do I mean?  You may be happy and at peace with life, but then the phone rings and you learn that someone you love has died.  Happiness is now replaced with sorrow and you grieve.  BUT joy is still there.  Joy is deep within your soul and lights the way when darkness surrounds you.   Joy is a gift that God wants us to claim.  Joy allows you to smile when your world has fallen apart.  Joy makes it possible for happiness to find you once again.  If you aren’t able to find joy or happiness, seek God first.  He is the joy, the peace, the light.  Once you have Him, joy will fill you. 

Romans 15:13 - May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.

Galatians 5:22 – But the fruit of the Spirit is love, JOY, peace, forbearance, kindness, goodness, faithfulness, gentleness, and self-control.

John 16:24 – Until now you have not asked for anything in my name.  Ask and you will receive, and your joy will be completed.

So who wins, batten disease or happiness?  Neither.  Joy wins.  Joy has filled our hearts, our home and our lives.  Batten disease may win some of the battles and there may be days of fear and darkness, but my God is bigger than Batten disease and He has overcome this world.  So today we smile, laugh and trust that Gods plan is right on track.  We praise Him for the joy that allows us to get up each day and make memories with our family.  

Valentine's Day

Valentine’s Day is a day to express your love for those who mean the most to you.  I am not a fan of Valentine’s Day, nor a hater of the holiday.  I am indifferent to it.  I understand the idea of Valentine’s Day and I agree we need to express our love to those we cherish.  For those of us who struggle with doing that, the holiday is the perfect excuse to say what we feel.

At our house we don’t really celebrate Valentine’s Day.  We buy cards for each other and I may or may not buy something SMALL for the girls and Brock, but overall, we treat the day as if it wasn’t a holiday.  To some this may seem weird, cold or as if the passion in our marriage is gone.  I, on the other hand, see it as comforting.  Neither Brock, nor I, feels any pressure to buy a gift that express our undying love for one another.  Instead, we can enjoy the day with no pressure, just love.  I know regardless of whether or not a boutique of flowers is delivered to my office, that I am loved and cared for.  Honestly, it means more to me when I receive flowers unexpectedly, rather than when the calendar says they should be delivered.

I express my love every day to my family.  It may not be in the traditional sense – words, hugs, etc. (I do say “I love you” to them daily and hug them daily).  I express my love by making a nice dinner, buying something at the grocery store that isn’t for me because I know someone else will enjoy it, sitting through a TV show that I don’t enjoy just so I can spend time with person who is enjoying it, etc. 

Don’t get me wrong, if you make a big deal out of the holiday, I am happy for you.  Like I said, I am neither a lover nor a hater of the holiday.  Enjoy the day, celebrate the love you share with your spouse (girlfriend or boyfriend), children, friends, etc.  After all, that’s what the day is about, so why not take the time to say and show your love. 

But as I reflect on the meaning of Valentine’s Day, I am reminded that my love for my children and husband is nothing compared to the love our creator has for us.  His love is the greatest we will ever know.  I am thankful our heavenly father doesn’t need a holiday to express His love for us!   I am glad he didn’t show his love with a box of chocolate, overpriced card or dinner that required us to wait 2 hours in line.  I am thankful His love is unconditional and constantly present.  He shows mercy and forgiveness when I deserve neither.  I am thankful He loves when I am unlovable.  I am thankful he shows His love to us everyday! 

Happy Valentine’s Day.  May you show your love and feel loved every day of the year.  Know that regardless of the love you do or don’t feel each day, that your heavenly Father loves you more than you can comprehend.

Love means never having to say you are sorry.

Love means never having to say you are sorry, or so I've been told.  Why would we say sorry to a stranger when we neglect to hold a door open for them, bump into them by accident or get in their way at the grocery store, but we dont apologize to those who we love the most when we hurt their feelings?  I have always thought this quote was ridiculous.  I am sorry.  Three simple words that can have a huge impact on a relationship.  I am sorry.  A short sentence that can bring healing and peace.

Over the last few years I watched as a relationship I once loved turn bitter and cold.  I was angry with a person; they were angry with me.  There was no communication between us around the anger; no attempt to resolve what was once a great friendship.  I avoided talking about the issues with this person because I hate confrontation and perhaps I didnt want to hear what I did to cause her hurt.  I consider myself to be a loving and kind person, but at times I was just the opposite.

I felt God telling me to reconcile this relationship.  "Go to her and correct what you have done" I heard several times.  Be loving, be kind, be Christ like.  I knew God wasnt pleased with me and this situation.  I also knew that I couldnt ask for Gods grace, mercy and forgiveness if I myself couldnt lend that same grace, mercy and forgiveness.

After resisting for a few months, I decided to right what was wrong.  I asked the person to meet me in a public place so we could talk.  To my relief, and perhaps disappointment, they agreed.  (Why disappointment?  Like I said, I hate confrontation, but I knew this was the right thing to do.)

This meeting could have started one of two ways.  I could have sited every heart ache, every unkind act and every harsh word she said and she could have done the same.  OR I could wave the white flag, apologize and ask for forgiveness.  What should I do?  What would Christ do?

I decided the best approach was to wave the flag and ask for forgiveness.  I looked this person in the eye and said, "We once were friends but over the last few years things have changed.  I dont know how we got to this point but I want us to be friends again.  I dont want to hash out every wrong that has been done.  Rather I want to forgive, forget and rebuild.  I am sorry for my role in the destruction of our friendship."  To my relief she apologized and accepted my apology.

I cant describe the healing power of "am sorry." I felt the healing begin when I said I was sorry.  I felt it again when she said she was sorry.  I felt healing continue as we sat for a short period of time and caught up on each other lives.

So if saying these two simple words can bring such healing, why arent we required to say it to those we love?  Why do watch relationships dissolve?  Is it our pride? Is it because they are more wrong than you?  Is it because they need to say it first?  Am sure there are a million reasons why.  But there is one reason to say it.  Christ.  Christ has forgiven you.  He died for you.  And to be blunt, HE EXPECTS YOU TO FIX THE WRONGS THAT HAVE BEEN DONE.

• Matthew 6:14-15, For if you forgive others their trespasses, your heavenly Father will also forgive you, but if you do not forgive others their trespasses, neither will your Father forgive your trespasses.
• 1 John 1:9, If we confess our sins, he is faithful and just to forgive us our sins and to cleanse us from all unrighteousness.
• 2 Corinthians 2: 7-11, So you should rather turn to forgive and comfort him, or he may be overwhelmed by excessive sorrow. So I beg you to reaffirm your love for him. For this is why I wrote, that I might test you and know whether you are obedient in everything. Anyone whom you forgive, I also forgive. Indeed, what I have forgiven, if I have forgiven anything, has been for your sake in the presence of Christ, so that we would not be outwitted by Satan; for we are not ignorant of his designs.
• 1 John 3:15, Anyone who hates another brother or sister is really a murderer at heart. And you know that murderers don't have eternal life within them.

Saying "am sorry" is rarely easy but can bring healing beyond measure.

What I wouldnt give...

What I wouldn't give to walk into my Grandma and Grandpa Willer's house one more time.  The drive to their house was long, but the excitement I felt as we drove up the road they lived on is unmatched.  I don't know what is is about their home that I loved so much, but I always felt a sense of peace, wholeness and happiness there.  I often do a tour of their house in my mind so I don't forget any details.  I can picture the bench in their foyer, the green glasses we drank from, the smell of homemade cookies, my grandma's dresser and the lipstick that always laid on it, and the piano my father loved to play.  The things I miss most about my grandparents house are the sounds I heard when we were there.  The sound of my grandmother humming as she walked around the house, and the laughter of my aunts and uncles as they reminisced about their childhood.  If I sit quietly I can hear Uncle Stan's boisterous laugh, Aunt Phyllis's calming voice reading us a bedtime story, and Uncle Chuck teasing my parents for liking the Hawkeyes.

I take back what I said early.  I do know what I loved so much about their home, its the people.  The people who filled that house genuinely loved each other and enjoyed being together.  It was rare for all four of my Grandparents children to visit at one time, so when it happened we cherished each minute.  The adults would sit around the kitchen table for hours talking,while the kids played in the basement.  It was simple, but perfect.  I often desire to go back to their home.  I wonder if the people who live there now would let me look around and reminisce for a few moments.  I wonder what it would be like to sit in the living room or stare out from the kitchen table into the backyard.  Would I feel the same sense of peace or would I be disappointed because the home no longer looks like it did 10 years ago?  Even if it looked the same, the people I love wouldn't be there, the noises I miss wouldn't fill the air and smell of Grandma's perfume wouldn't linger.

I so desire to feel the way I did in their home everyday - loved, at peace, carefree, etc.  How can I get that back?  Life is moving so fast and I am responsible for so many things but when I allow myself to have quiet moments of reflection and spend time reading the Bible, I find the peace and love I desire.  I know, you are thinking, really?  Yes, really.  I feel at peace when I have a few moments of time with God.  Getting myself focused, redirected and out of this world helps me deal with the journey I am on in a positive, loving and calm manner.  Peace with the journey comes when I hear God's voice telling me He walks with me and carries me when I grow weary.

The only thing better than spending one-on-one time with God, is spending time with God, in my Grandma's living room, with my grandma sitting beside me.

Why Blog?

Why write a blog?  There are so many good blogs out there, do I really think I have anything new or interesting to say?  No, but writing, for me, is therapeutic and I have an opinion on so many things, so why not blog?

Before I start blogging, I thought I would introduce myself and explain what this blog is all about.  I think I am simple and easy to figure out, but my husband would say otherwise.  When I try to explain why I like one product, article of clothing, food, etc. over another, I realize that he might be right, but to me it all seems so simple.  I like what I like, how I like it.  I am a Christian and this sets the foundation for everything I do in life.  It the biggest thing that defines me.  Please dont get the impression that I am perfect, because as well all know, no one is perfect; only Jesus was (and is) perfect.  I am a wife.  I have been married for 14 years to a guy who makes me laugh daily.  I dont take my marriage for granted or lightly.  Some days we live in marital bliss and other days I feel like hitting him in the head with a frying pan (not really, but you get my drift, and am sure he would say the same about me.)  I am a mother to two girls.  The oldest daughter is amazing!!  She is funny, beautiful, witty, and has a true heart for God and the human race.  Our youngest daughter is a combination of sugar and spice.  She is ornery and loving, determined and brave and has been diagnosed with a rare, terminal disease, that has no known cure or treatment.

I work full time, have held a few different positions at the church we attend and am an aspiring Christian speaker.

I hope that my blogs will make you laugh, cry and think.  I know my opinions may vary from yours, but I hope we can find that road to tolerance is a two way street.  Meaning, if you disagree with my opinion I hope you wont stop following my blog, but rather agree to disagree.  I will respect your opinions and comments, if choice to leave any, if you will do the same.

I hope you enjoy my blogs.  Now, I need to return to designing my site, which is proving to be a challenge.

Ellie