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.