Choosing Joy

I originally wrote this on August 8, 2008  ... all dates and ages correspond from that day.  :)
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This whole past week my thoughts have been consumed with the death of James and what his entire family has been through. In my reflection I have felt so much joy because I know in all of James’s trying life that is the only thing that Laura ever focused on. That is not to say that she didn't struggle with moments of frustration, anger and doubt, but whenever I spoke to her it was always JOY that my heart was left with.

Fourteen years ago Laura and Brian were expecting their first child. It was a perfectly healthy and normal pregnancy. On February 14, 1995, something went wrong during the delivery. I pause to think of the commercials I see here... "If you think your child's cerebral palsy is due to a doctor's mistake..." here we are encouraged to sue, to hold on to our mad. James’s was not only left with cerebral palsy, but a quadriplegic. When Laura shared the story with me it was the next part of the story that she emphasized. James was the first person life flighted from their rural hospital to the city. The hospital had just gotten the new helicopter; if it had not been for the new helicopter, than they would never had James at all. Laura and Brian still had a precious new life to hold on to and to love. They choose to focus on the joy and wonder that God had given to them instead of the “what ifs” had things gone differently.

I had the privilege of meeting James in the summer of 2004. Laura was certain, even back then, that James was very aware of things going on around him. He could not speak, but he could smile. He could not say no, but his eyes could answer questions. He wanted to see a specific episode of “Veggie Tales” that day. After Laura rambled off a couple of titles, his smile lit up the room when she said the one that was on his mind. James loved getting high fives, and his smile warmed my heart when I got to smack his hand with enthusiasm!

About two years ago Laura and I had a long conversation about a tough choice she and Brian were facing. They lived in rural Canada, about two hours outside of London in Ontario. In the city of London there were great opportunities for James. She knew his young mind was developed beyond what he could express. James also loved to swim; A place where he was not strapped into a chair (because he would fall out if not strapped in). In the water he could float around and his arms and legs could be free. In the city of London there would be a pool available to him daily. Moving was not an option for the family, so the option became a home share program. James moved in with another family in the London area, Monday – Friday, where he could get outstanding medical services and education. He would then come home on the weekends. After struggling with the decision of letting James go, she had to do what was best for him. A few months ago Laura was able to write about all the awesome achievements that James was making. Through medical technology she was finally getting proof of how intelligent James truly was! She was so excited that James was able to express himself and share so much with the world.

A few days ago I was able to read and excerpt from the book Soul Revolution by John Burke. The excerpt was titled “Two dates and dash.” The point was we don’t have a choice about the date we are born, or the date that we die; but we can do everything about what that dash in between those dates’ means.

The dash between the dates below is full of love and joy. Those are the things that Brian and Laura chose to share with James and that is the life that he knew. His smile will forever warm my heart.

James Daniel Ross
February 14, 1995-August 4, 2008

Dressember!

So God put it on my heart to to do this Dressember thing .... I really did not want to, but here I am.

Dressember, to my surprise, started off as a fashion thing of sorts.  The two ladies who started it wanted to bring back femininity and wear a dress, any dress, every single day in December.

I only heard of Dressember this year when the raising awareness and money for the "International Justice Mission" were added to the event.

I decided not only would I wear a dress every single day in December, I would be wearing the same dress every day!  Mostly because I only have one that fits comfortably, but truly, it does attract a LOT more attention when people start to see you in the same dress over and over!  For me, this is about bringing awareness to something many people have not even really ever heard of - or just brushed off as something that does not happen here.

I really do not like asking people for money, and I already did that once this year, but raising awareness for Human Trafficking has been on my heart for several years.

A few years ago I learned how young girls were being abducted and used in sexual slavery right here in the United States.  Not only that, Detroit and Toledo were among the largest Human Trafficking hubs in the United States.  Young girls are lured away (or even one story that was shared, going to a party with a newer friend!), drugged, and moved out of the State so they have no idea where they are.

Recently (like this just happened in November) one of Matt's friends had her daughter and her daughter's friend at Great Lakes Crossing.  At ages 15 & 16 the mom agreed they could go and watch a movie while shopping was happening.  They are very lucky their daughter and her friend came out of that movie.  The girls were "friended" by a lady sitting behind them.  Casual conversation led to being offered candy.  (hmmmm.... starburst would have been my downfall!!)  They declined but a little bit later the lady brought out some hair accessories and tried to sell them.  This all just in the short time before the movie started.  The girls decided to get up and report the lady.  Upon return, the lady was gone.  Feeling suspicious, a police report was filed.  It was then revealed that a "dust" is sometimes used on packaging to make the young girls a bit drugged... so that they can be casually walked out of the theater and taken away.  This not some guys luring your daughter into a car anymore!

There are lots of stories on the internet if you choose to educate yourself.  They are heartbreaking!

If you want to learn more about the International Justice Mission - which is a legal group helping with Injustice in other countries, which includes freeing women and children from sexual slavery, you can click on my link here... http://www.ijm.org/

If you would like to donate $5 or more to my fundraising, you can donate through my site here...
https://www.ijmfreedommaker.org/campaign/2241/Dressember-for-IJM/

Thank you for your time!!
Love, Marceen

Over Coming Obstacles

Many of you know by now that I will be doing the Warrior Dash on August 3rd with my awesome friend Stacy!!  I am very excited about this journey because I have decided to raise money for St. Jude's Children's hospital in the process.  What most of you do not know is truly how physically hard this could be on me.  Let me tell you, if I had to run it today I would be lucky to come in under two hours - unless I end up skipping obstacles after many tries - but that is not my intention.  Let me try to paint a picture for you, but first, realize this is a picture I am truly only learning the layers to myself.

I am not even sure where to begin because I have been only given fragments of pieces myself.  The first piece I can remember being revealed is when I went for speech therapy in the 9^th grade.  I had nodules on my vocal cords that the doctor felt therapy could help.  I already had surgery on my vocal cords when I was only 5 years old so I have a raspy voice because of it.  More surgery would mean more scarring to the vocal cords and an even further change in my voice.  Anyway, during speech therapy I was told I do not breathe correctly, only using the top third of my lungs completely and the middle section only somewhat.  The muscles around the deepest valves to my lungs are shriveled up doing nothing.  At the time I did some vocal exercises and breathing exercises for awhile, which help enough to wear down the size of my nodules and no surgery was needed.  I was encouraged to keep on with the breathing exercises so that my muscles would not return to their shrivel status, but in a short time they were forgotten.

When I was 18 years old I joined a gym.  I was a decent weight for my height, mostly because I was on my own and did not eat much of anything.  I was only about 125 lbs. back then.  I remember having a free fitness test done and it was commented on how very low my muscle tone was.  Joining another gym when I was 20 years old, and still then, I was again told my muscles tone to fat ratio was way off balance for my weight.  I never had money for a personal trainer so I never really understood what this meant and quickly forgot about it.

Last year in April I joined group training with a personal trainer.  This is the YMCA’s program to gives you the benefit of a personal trainer at a lower cost.  When I went through my personal set up with weight, measurements and the whole deal, I also got this machine which read my body fat percentage.  While my BMI was in the overweight category, this machine showed I had such little muscle that I was actually in the obese category.

In May of last year, seeing my new primary care doctor and trying to get the medication I liked best for my ADD, she insisted I have an EKG done first.  Well, she did not like the pattern in my EKG and sent me to a cardiologist.  My cardiologist was very impressed that my doctor even caught the glitch in my heartbeat.  It is there, but my heartbeat looks the exact same every time.  It is an always present imperfect pattern.  It ended up being diagnosed as a short PR (pulmonary rate).  Really he said it is Wolff–Parkinson–White syndrome (WPW) but he will not put that on my file because it tends to freak other doctors out.  The good news that I am asymptomatic – not showing any symptoms.  After doing a stress test and getting my heart rate up over 200 beats per minute, my doctor noted how much better my heart and lungs performed after the stress test than prior to it.  So what I am supposed to do is get my heart rate over 85% of max almost daily to keep my health up and stay asymptomatic. 

 

I have attempted many times to start exercise programs, and have always come up short.  I get so tired, so exhausted, that when I begin an exercise program I usually come home and want to sit for hours and do nothing.  Actually, anytime I do anything for a couple of hours, even running errands, I come home exhausted and want to sit and do nothing. 

 

I recently joined a class at Running Fit in Ann Arbor called “Running 101.”  Having the class made me accountable.  The first week I wanted to quit so many times.  I sit on the pavement and nearly cry.  My muscles lock up and I have to stop and stretch them out often.  Having this class and having to push myself beyond where I normally give up, I have realized how much the lack of oxygen and low muscle development effect me.  The good news is by the start of week two I was feeling so much better!!  Instead of constantly being exhausted and wanting to sit around, I was actually getting some energy after I exercised 5 of 7 days. 

 

Then I took two days off and it was like starting over.  I was mentally reminded that I have to be consistent with my exercising and breathing or my muscles go right back to where they have always been.  Maybe after months of building up my muscles I will be able to take a couple of days off, but not now. They are a shriveled up mass and want to stay that way.

 

Of course right when I started to do well I have been hit with a yucky virus.  Sinus infection, coughing, the runs (and not the running I should be doing) and it has gone on and on… I have not run in five days now.  It once again will be like starting over.  I am really bummed to have missed the week three class too!!  It was the best one on stretches!  So when it comes to my fitness, I feel like I am constantly over coming hurdles.  But I know for my overall health, and to keep my WPW asymptomatic, it will be worth it to constantly fight them. 

 

So I have this crazy race, this “Warrior Dash” scheduled only five weeks from now.  I have a long way to go on building up some arm strength if I want to be able to pull myself up or pull up a friend on any of those obstacles!  But I finally realize that if I give myself just 20 minutes a day, and get past the first week, I will get the energy I need to keep going.  I am just not sure how to deal with getting sick and I surely need to get better before I can truly restart now!

Sleepless Nights can bring fruitful mornings...

3:51 AM found me looking at the time again.  I had awaken at 3:19 and had been tossing and turning.  It was time to get out of bed, something I rarely do, but I knew Matt did not need the disturbed sleep.  My rule is usually to stay in bed and close my eyes - pray - and eventually sleep will come.  But last night I just got out of bed, grabbed my phone and sat in our "Lazy Boy" chair.  

After catching up on my "Words with Friends" and "Scramble," I began to scroll through Facebook.  I came across the status of a friend I met via the internet years ago when I was pregnant with Cathan.  Although we never met face to face, we did share phone calls, laughter and tears years ago.  She used her Facebook status to come clean, admit addiction and make a cry for help.  It was brutal honesty, not only for friends and family that needed to hear, but for herself - whom she admitted she was afraid to face without the alcohol.  

It got me thinking about my own addictions.  Though through the years I have never turned to obvious addictions such as alcohol, drugs or food, I have always found a way to make my own escapes from reality, and not do what I ought to be doing.  

Addictions are tough, because as my friend admitted she realizes she cannot have one drink, not a single one; because there is no “just one” when it comes to drinking and what it triggers.  I have found my “escapism” -as I have come to call it over the years- just as challenging.  For me I turn to less harmful things outwardly, but the results can still destroy relationships.  It has been different things at different points in my life, soap operas, reading, plenty of other T.V. shows, computer games, mom’s groups (I am great at giving others advice and showing love and encouragement in lives I am not personally touching), Xbox games, Facebook, phone games, etc.

These are easy to justify as “me” time.  Many times when I would try to talk about it, I would hear – well, you have to have some time for yourself.  Reading is fine… it is OK to go on Facebook to see pictures… You words are inspiring and encouraging… You need to have your time too… You do so much with your children that you need to find time for yourself.  With an alcoholic, the addiction is clear – no drinks, not even one – but I have long struggled with how to manage my “fun” time without it turning into constant escaping.  I cannot tell you how many times I have fasted from one thing, only to turn to another. 

And while drugs or alcohol addictions may hurt so many on so many levels, my family also has suffered from my selfishness with my time.  Besides the obvious of things not getting done around the house, my children have been asked to wait for my attention while I played one more round of “Scramble” or one more word on “Words with Friends.”  If they were asked what the most important thing to their mom is right now, they might easily answer that my phone is – and that is a scary thing.  I know Matt has often mentioned how I often bury my head in my phone every ten minutes.  And while lately I have not been nearly as bad as other times in my life, I am yet given another wake-up call.  

So how does one with an addictive personality take time for me?  I am not sure I can.  I am not sure that I could ever just play one game from time to time.  There is always a new score to beat or even a new word to learn.  The latter is my biggest excuse for “Words with Friends” because I am continuing to learn new words and definitions.  By the way, I do have to tangent and share just one... the word evite is actually an archaic word meaning “avoid.”  I love the irony in that!  So send out that evites to all your parties ;)

Back to my addictions… they all seem to fall into forms of “amusement.”  I recently heard that the word “amuse” means “to not think.”  Now I cannot find the origins of that myself, but I do seem similar ideas within the definition of the word amuse:  to divert attention in a joyful manner, to pass time agreeably, to puzzle or to distract.  I like puzzles, because solving them makes me feel successful.  I like word games, because they make me feel intelligent.  Who would not wanted to have their attention diverted from housework and things that need to get done?  But I really do see how being “amused” is really “to not think.”  Maybe I am thinking in some ways, as to how I might solve a puzzle or learn a new definition, but I am using whatever source I am escaping with to “not think” about what really needs to get done.

I have recently been reading the book of Ezra and it has been speaking to me on how these people found joy in the work they were doing.  This concept is nothing new to me, but again I am praying that I can find enjoyment in the everyday work I do for God and my family.

Today, for Father’s Day, our minister spoke on breaking dysfunctional cycles.  It was very fitting for me with all I have been thinking and praying about.  We also sang a song that has been speaking to me every time I sing it for the past six months.  In this season of my life, I keep singing these words…

“Oh Lord You've searched me 
You know my way 
Even when I fail You 
I know You love me”

I may not know how to overcome these habits but I know that God, my Heavenly Father, knows how He created me – He knows my ways.  Even when I constantly fail in showing His love and grace to my husband and children, He still loves me.  I can have hope in the fact that if I ask him to order my days, He will.  If I seek Him first, He will make my paths straight. 

When I think about coming forward with my addictive personality, Satan loves to interject with how people will view me differently.  It was so fitting when our minister closed with these words:

“There is something more important than pride or dignity – that is restoration.” – Mark McGilvrey

So I pray to God that He can restore me and my relationships through His love.  May you also find restoration beneath the loving presence of His shielding wings.

A Missionary's story...

Sometimes we get to hear from a missionary, and how the pieces fit together in amazing ways!!  I absolutely love this talk and I promise that you will be inspired!
you can listen here...http://www.5milechurch.org/sermons/?sermon_id=82

Worse than dairy....

Let me start by saying that Rebekah is not at risk of death from ingesting certain ingredients, and with that I can not relate.  But for us our biggest challenge is proving to be the dyes and now the preservatives when we attempt to eat out.  Thankfully we are not a family that eats out often, but we have had two occasions within a week (very rare) and we are realizing that it will be a long, long while before attempting to have Rebekah with us again.

After reading a blog which enlightened me to TBHQ in all of McDonald's cooking oils - except of course in their European chains where TBHQ is a banned from any foods - I did a little research.  To the best of my knowledge, McDonald's uses oils with TBHQ in the United States so that it can remove the saturated fat.  Lower fat = healthier to the unknowledgeable American.  Finally, after months of not knowing why, I had an answer to why Rebekah reacted the three times we let her try McDonald's chicken nuggets.  Their nuggets are dairy free so I had thought they were safe, but after her third reaction to them I thought maybe there was dairy cross-contamination... little did I know at the time of the bigger underlying issue.

So we went out to eat for Cathan's birthday at a Mexican restaurant - his request.  I immediately asked if I could see the oil at this place and was allowed to do so.  There it was, big as day, the oil they use contains TBHQ.  I had some hope remembering that "Food Babe" just posted on a Chipolte Restaurant chain win, so I went back to that article this morning.  Good thing the oil eliminated everything at the restaurant we went too (not a Chipolte, but I was comparing), because the corn chips would have most likely contained benzoic acid.  The Mayo Clinic's information on this one automatically puts it on our avoidance list.

So with having to keep Rebekah off all artificial preservatives, there is just going to be no way we can have her at restaurants right now.  I ended up walking Rebekah back to the van on Friday while the rest of the family enjoyed Cathan's birthday dinner and surprise dessert.  :)  She is just reaching for everything on the table right now, and this being her second outing in a week (Matt's parents had taken us out to eat the week before as a special treat) - Rebekah was being much more persistent about eating what we had.

Plus, after reading and learning so much, it is getting harder and harder to eat any of it myself.  I walk through a store and my thoughts go "red 40, BHA, BHT, TBHQ....."  Oh, and yeah, acronyms are a huge clue.  Speaking of, Cathan found a new acronym in his chocolate.  PBPR.  I was in the van with Rebekah while Matt ran in the store and he called me to quickly look it up.  I instantly said that an acronym can not be good, but apparently Hersey's thinks so.  The company decided cocoa butter is too expensive so they found a replacement... here is a blog on that http://becausenooneasked.com/2009/12/27/pgpr/.

This gives you a little insight to our challenge and it is growing... but so our the quantities of good nights of full rest for both Rebekah and her parents.  :)  Having a healthy child not itching and twitching and squirming and cramping is so much better than the challenge of finding real food.

The Watermelon Incident

On Monday I had the privilege of visiting two sweet women who mentored me through a Women's Bible study at my previous church.  I am getting good at packing up many food options for Rebekah on outings, but as I piled things into the van I somehow forgot the diaper bag.  It was a good thing one of the ladies has a daughter a couple of months older than Rebekah as I knew I would be able to change her diaper before the ride home.  The only semi-challenging part was half of Rebekah's food was in the diaper bag - and I was praising God it was only half and that I had options with me.

As lunchtime approached Rebekah was offered some watermelon.  My instant response was, "Yes!  Thank you, fruit is always a safe option."  It was then that I was instantly reminded (a prompting from the Holy Spirit) of a friend telling me that dyes have been used occasionally in fruits.  I dismissed this thought by reminding myself that I had looked that up in the past and I had confirmed dyes added to apples to make their skin more red/ripe looking, but I had not come across other fruit.

When the cut up watermelon was handed over, I exclaimed, "Look how red it is!"  Since I was too oblivious to hear my own words they were echoed by our mutual friend, "That really is some red watermelon."  (prompting number 2 which I just did not open my ears to hear.)

My friend's daughter, who sat across the table from me, had spread a white napkin out and a few pieces of watermelon were placed in front of her.  Instantly I saw the red liquid creep into the white napkin.  After a quick thought of "that is not normal" the enemy snuck in for the kill with a thought of "raspberries and strawberries do that, why not watermelon?  Still, I could not remember once seeing watermelon bleed like that....

Rebekah only ate one piece completely to my knowledge... she took a bite of a second and threw it on the floor, and then a bite of a third and threw it on the floor.  It is amazing how her body knows how to rebel against chemicals, even when her mind sees a food she is "allowed" to eat.  By the time I started my drive home, I realized the three warnings I had been given and dismissed.  I had to know and I did not want to wait the 40 minutes until I got home.  A quick call to Matthew and he confirmed that sometimes red dye is injected into watermelons to make them appear ripe.  (This is just one source I found:  http://articles.timesofindia.indiatimes.com/2012-05-12/kanpur/31678929_1_bright-red-shade-watermelons-harmful-colours)  ... by the way, this is edited:  most stories of dyes in watermelon seem to be in Asia and India.  It is not supposed to happen in the United States.  But sometimes, things happen... and this watermelon did appear very unnaturally red....

Not many people can even come close to understanding how the artificial dyes and preservatives can effect a child.  I am constantly surprised myself, even when I see the outcome.  I tried to dismiss Rebekah's cranky and uncomfortable afternoon to a cold/virus that was going through our family.  I tried to be hopeful for a good night's sleep by giving Rebekah some natural nighttime medicine that contained melatonin.  By midnight I heard her babbling, and crying on and off.  By 3 A.M. there was no more denying it.  Rebekah was restless and uncomfortable and crying with misery.  I brought her back to our bed which really translates to nobody gets sleep.  Rebekah tried her best to be still and I tried my best to relax her.  At one point she hit her head a few times while saying, "No, No, No!"  She knows she is supposed to be sleeping, and I can not even imagine what her body goes through.  My heart breaks as I think about the words from another blogger of a mom who's child reacts to dyes and I hear these words as if coming from Rebekah..."Monica ends up on the couch next to me, shaking and sobbing uncontrollably and asking me to make whatever is happening to her stop. Squirming and itching and rocking and crying, “Just make it stop, mom!” 

"Just make it stop, mom!"  I see it in her eyes.  I hear it in her self frustration saying, "No! No! No!"  How else can a 22 month old say it?  In the above quoted blog, http://www.allergykids.com/blog/seeing-red/, the episode lasts an hour... for Rebekah it still seems to be 72 hours before the cycle is completely done.  She goes through softer stools and a really bad rash.  She will also scratch her skin until it bleeds just where her nerve endings are at the middle lower part of her backside.  All these things seem to be part of her red dye reactions.  Even though I have read stories which confirms she is not alone, she seems to have the most extreme sensitivity to the littlest amount of dye.  It breaks my heart that after it starts there is absolutely nothing I can do to help her through it.  She only finds comfort in sleeping upright on her mommy or daddy for brief moments that get better after the 24 hour mark.

I am thankful some people in our lives are starting to "get it" as best they can.  I am thankful my mom has made 3-4 visits a month and has gotten many play by plays of what we have gone through.  As I went through this story yesterday with my mom, I started with "Rebekah got some red dye on Monday."  My mom wondered how on earth when we have been so careful.  "Watermelon" I said, and her instant response was "You are kidding me!"  There was not a single hint of speculation in her tone, but more of an astonished tone that it is now in a natural food.  She instantly followed up with "I can see how they would do that... making a melon appear ripe."  She is getting it, and for me that is a sense of peace.  Not having to defend myself or explain it in 100 ways.  Rebekah reacts to chemicals.  Since February we have only had two episodes Praise the LORD!  One from the BHT in Kellogg's cereals (which is not as severe as a dye reaction but still enough), and now the watermelon incident.

Here is to praying I can hear the warnings a little quicker next time.  Here's hoping to no more 72 hour episodes, ever!