Technical Difficulties...

As I finally had time to sit down and put my random thoughts into words, I signed into my Google account to find that for some reason since my last post my browser isn't compatible with my blog.  My first thought is that maybe God is trying to tell me something...like maybe I shouldn't be blogging.  I can't design my blog the way I want...now I can't even type the darn thing.  Then I thought maybe I am just having technical difficulties like that Obamacare website.  But unlike the Obamacare debacle, I outsmarted my computer and switched to Google Chrome.  So alas here I am blogging again.  Then, my keyboard decides that for every letter I type, it needs to add 10 more.  Maybe God is trying to tell me somethinggggggggggggg.


We hope you all had a nice holiday season.  It's hard to believe that 2013 is in the bag already.  We had a nice Christmas.  We were able to spend some time with our families and had lots of quality time at home.  The highlight of L&L's Christmas gifts has to be their new air hockey table.  The girls have always loved playing air hockey so we surprised them with their own table this year.  Let me tell you, they are competitive and if you ever get the chance to play them, you better bring your "A" game.   Especially Lindsey... she takes no prisoners.  She really needs to work on her losing skills.  She could very well be one of the most competitive people I have ever met.  She does not like to lose and she always wants to go first.  We continue to work on those skills....  Delaney's favorite gift would have to be a new iPhone.  She has waited years to have one and it is a permanent fixture in her hands.   Mason's highlight seems to be a $3 stylus he uses to play games on his phone.  Just goes to show that sometimes the little things make a big difference in  your life.  Matt and I enjoyed watching the kids open  their gifts and seeing the eager anticipation on their faces.  As the kids get older, we treasure this time more than ever.  Poor Scooby didn't get any gifts this year.  Wait, I take that back....he helped himself to one of the kids' chocolate Santa.   His gift to us was the pungent smells that came out of him afterwards.  That dog is living on borrowed time as he has definitely used up all of his lives.

I am looking forward to 2014.  I am not making any resolutions because if I do, I am just setting myself up to fail.  I shall call them goals instead.  One of my goals is to clean my house of useless clutter.  I woke up today with the urge to clean.  Then I thought better with the kids still home for six more days.  That is really just setting myself up for failure.  If you are like me, the urge to really clean only comes every once in a while so I hate to not act on it.  Instead I will play with the kids and make more messes.  It is more fun anyway.

Well I am tired of fighting this stupid keyboard.  I have spent more time hitting backspace than I have typing. Today..it wins.  As I sign off one last time this year, Happy New Year to you and I hope 2014 is a blessed year full of good health and prosperity.      

Here's to New Friendships

Nearly every morning I wake up with a song in my head.  Sometimes it is a random song that I wonder how in the heck it got in there.  You know like a song from the '80s or some Miley Cyrus song.  Lately, the song "One Thing Remains" has been in my head a lot.  Here's the link if you want to listen to it.  It may just be stuck in your head all day too but, what a great song to sing.  One Thing Remains  I think this is God's gentle reminder in my ear that He is always with me, even in the lowest of lows. 

We are coming off a successful pajama weekend.  I love pajama weekends and we haven't had one in a very long time.  We stayed in our pajamas, did lots of crafts, played games, watched movies, watched football and basketball, ate some yummy food and snuggled.  That my friends, is a perfect weekend to me.  Only thing that would have made it more perfect is if Matt would have been home to join us.

The girls had their fall dance recital last Sunday.  It was held at the Urbandale High School Performing Arts Center on a big stage.  It was a great day and the girls did awesome!  There were five different classes there performing and they all came together at the end for a tap finale.  There is never a dry eye in the place when recital time comes around.  What a blessing it is to be a part of a program that reaches out to kids who normally would not have the chance to take dance class.  Some kiddos are in wheelchairs and need full assistance and others are out there performing on their own.  Everyone performing has a huge smile on their face and the hearts of those of us watching are blessed beyond measure.  We are thankful for Ballet Des Moines: Dance Without Limits and the awesome volunteers who have made a difference in the lives of our family and many others.   Below is a picture of the finale rehearsal.  L&L are in the blue and purple tutus (on the left side) that were graciously made by a volunteer.

Last week I made a phone call that I probably should have made a couple of years ago to Childserve to see about getting the girls involved in a respite program.  They have different programs on weekends where kids can go and spend time with other kids with special health needs.  Come to find out, they have one called "Just for Girls" that sounds perfect.  It has become clear to us that the girls need some social interaction with others outside of school and our home.  Being the super overprotective mother that I am, this is a huge step for me. But, is one that definitely needs to be taken to allow the girls to experience time away from home and spent with others.  I am a bit of a control freak when it comes to my kids.  Surprise....surprise.  But in my defense, we have worked really hard to keep our girls safe and too many times to count over the last 12 years, we could have lost one or both of them to a seizure.  I know they will go there and have a great time and they will be well taken care of.  I am excited for them to hopefully form some new friendships and get to experience some new things in life.  A friend of mine said to me one day, "aren't you glad they have each other to go through this with?"  I can't imagine either of them going it alone.  At least they have one friend who is always by their side.  They do get on each others nerves sometimes. But, when they wake up in the morning the first thing they do is roll over to see if the other one is there and if she is not, the first question is "where is she?"  And when one is having a seizure, the other is right there by her side "helping" and the worried look is evident on her face.  It really stinks that they both have to endure the hardships that they do but, I am so thankful that they have each other. 

As the kids grow up, I am forced to loosen up the apron strings.... Time to get rid of the double knotted apron and enjoy watching them grow more independent before my eyes.  I am scared and excited all at the same time. 

Procrastination and Other Words

It seems my goal today is to do everything possible to not exercise.  I've pretty much thought of every excuse.  I need to clean the house.  I need to make some phone calls.  I need to pin a few things on Pinterest.  I need to play Candy Crush.  I need to go pick the girls up from school.  Ugh...the laundry. I need to fold those three baskets of mismatched socks.  Okay, I am just kidding about that last one.  Please tell me I am not the only one with basket(s) of unmatched socks. Please.  So here I sit at the computer (again) with the Natalie Grant Pandora channel playing some really good tunes.  I have my tennis shoes on at least...  I absolutely love the song "Your Great Name."  While listening to Pandora a while back, I heard this song in acoustic and fell in love even more.  If you haven't heard it before, click below.  There's something about unplugged and raw acoustic versions of songs.  I like them. 

Your Great Name (Acoustic)

We are plugging along.  Kinda like Dory.  Just keep swimming.  Just keep swimming.  Just keep swimming.  I do have to share a thankful blessing with you.  I am thankful for our respite providers who come into our house and watch the girls for us.  The girls absolutely adore them and almost daily ask who is coming over to play with them.  They are disappointed when I tell them nobody is coming.  I don't take it personally.  What kid doesn't like babysitters?  We usually use our respite time to go to the big kids' events and sometimes we even go out on dates. We love knowing that we can go places and know that our girls are being well taken care of at home.  Respite...a blessing for all of us. 

I have shared with you before how Lauren has a word that she uses when she gets angry and we have deemed it her naughty word.  It is "baby."  She has another word that she uses at times which we are still trying to figure out where it came from.  It is "wean-oh."  She has a hard time putting the "r" sound at the end of words so I will let you figure that one out...  You never know when wean-oh will come out of her mouth.  Luckily, it doesn't come out in public often. We have told her that it isn't an appropriate word and she shouldn't say it.  She doesn't know what it means.  We started saying  "schnitzel" when she says it and then she just laughs.  She has said it a couple of times at therapy at Childserve.  The therapists look at me like, "did she just say what I think she said?"  I just nod my head.  The other day we were at the drive-thru at Wendy's and just as the guy was taking my money, this little voice in the backseat says, "WEAN-OH!"  I just smiled and drove away.  Oh Lauren...you always keep us entertained.

Lindsey's word(s) aren't naughty or inappropriate, thank goodness.  Her cute words are, "I have a better good idea."   When she thinks of something or gives her opinion, she has a better good idea.  She has been saying it for years and we just can't bring ourselves to correct it.  You know how kids say the cutest things and you know you should probably encourage them to say it correctly but you just can't.  When Delaney was a toddler she called Cheerios "teebios."  They are still Teebios in this house. 

Hopefully one of these days Lauren will have a better good idea and stop saying wean-oh.       

Debby Downer Has Left the Building

After my last blog entry was deemed "scathing", I feel bad if it was misinterpreted by anyone; especially those I love dearly.  My main point was about the stigma we women put on ourselves about thinking we have to be "perfect" and fit into the mold of the perfect mom, perfect wife and perfect female specimen.  We think we have to act and look like we have it all together or people will think less of us.  But you know what, nobody is perfect.  When Matt and I received our Genetics 101 lesson when we signed up for the genetic testing for Lauren last month, we learned that every single one of us has on average 7-10 bad genes.  Yep, we are all defective.  So when you see the perfect specimen of a man or a woman walking down the street, know they just might have a few more defective genes than you.  How is that for a little bit of encouragement!?  As far as my tirade about disruptive children...having kids with emotional/behavioral issues is by far the hardest thing for me to deal with personally.  It takes a toll on the whole family and opens up a whole new world for us.  My emotions are very raw as I know I can't control it and neither can my little girls.  As a mom, you want nothing more than to be able to help your children.  It's painful to watch them unravel at the seams and be so helpless. 

Now I move forward in a different direction as I choose to focus on the positives, not the negatives.  As Sweet Brown says, http://www.youtube.com/watch?v=6gLMSf4afzo.

October has come and gone...didn't it just start?  I always see people posting 30 days of thankful on Facebook for the month of November.  I think that is such a good idea to stop and reflect on what you are thankful for.  We should do it everyday, you know.  I will probably not take part on the FB thing as I know I wouldn't follow through for the whole month.  Not because I don't have 30 days of things to be thankful for, just because I have a hard time following through with things I start sometimes.  You know like when you go to the doctor and get an antibiotic and are supposed to take it for 14 days.  Then by day 9 or 10 you stop taking it because you feel better?  Yep, that's me...  I will do my best every day this month to stop and reflect on one thing I am thankful for.  Care to join me?








       

 

What a dreary day before Halloween.  Which also happens to be my dad's 75th birthday!  Happy Birthday to the best Dad a girl could ask for.  Thinking of you brightens my day.

I will give you a disclaimer before I even begin that this mom is feeling a bit tired and defeated this week.  My patience is extra thin and my heart is extra heavy.  I don't like to cry so when I get the urge, I usually tell myself to knock it off.  It makes me tired and I suppose in a way, makes me feel weak.  I know that sounds kind of dumb but, I don't like to feel weak and vulnerable.  I am supposed to be the mom who has it all together.  You know the one that has the plate that never gets full, the glass that is always half full/not empty, that takes each curveball that life sends my way and smacks it out of the park.  I think we as moms sometimes expect too much out of ourselves.  I know I do.  We put on a façade to make people think we have a perfect family, a perfect home, a perfect marriage.  When honestly our children are far from perfect and sometimes they really disappoint us.  Our homes are a cluttered mess so we stuff everything into a closet and one day when you open the door, it all comes falling out.  And when we step out in public with our spouse, we put on our fake smiles and pretend like we've got it all together when really we don't.  I don't really know what point I am trying to make other than to tell myself and maybe you, if you feel the same way I do, that it is okay to not be Super Mom (or Dad).  It is okay to admit you are weak and vulnerable.  It's okay that sometimes you feel really disappointed in yourself or your loved ones but, we are not perfect and we do make mistakes.  Forgive yourself for your disappointments and forgive others for disappointing you.  Put one foot in front of the other and carry on... and don't look back.  And put a smile on your face because it looks so much better than a frown.  And that my friends, is my two cents for the day. 

Lauren and Lindsey had their 12 year old check up yesterday.  Twelve...it is such a big number for my babies.  I shared our behavior/emotional issues the girls have been having and she is referring us to a developmental pediatrician to see about some treatment options.  Not sure yet what that entails, but we do know we can't keep dealing with these outbursts without losing our minds.  I want to share something with you that I hope you take to heart.  When you are out in public and you see a family with a disruptive child and you think to yourself, "If that was my kid, they would never act like that. Why do their parents let him/her get away with that type of behavior?"  Then you give them a dirty look or make a snide comment about them,  know that that child may have a behavior disorder or a mental condition and "those" parents are doing their best to try and deal with their child.  Chances are, they are at their wit's end and would love nothing more than to have a child who acts perfectly in public.   Give them some grace and maybe a smile to encourage them.  We have been on the receiving end of the "stink eye" in church and the glares in public before so this is coming straight from the heart of one of "those" parents.  Maybe your smile and encouraging words or actions might give that mom or dad what they need to make it through the day.   Let us be encouraging and not discouraging. 

Thanks for listening to my ramblings.  I in no way mean to offend anyone with my two cents, which turned into four.  I have always been a strong believer in building people up instead of tearing them down.  Every single one of us has so much to offer and life is too short my friends.  Be an encouragement to those who God has placed in your path.  They are there for a reason. 

I wish I was smart enough to figure out how to design this blog...  Why am I so challenged at this?  Why do they have to make it so hard?  All I want is for my picture of the girls to be front and center, without half of Lindsey's head cut off and the "blog" to not take up half of the picture.  Is that too  much to ask for?  I have literally spent way too much time trying to figure it out.  If you are blog savvy, leave me a comment and tell me how to fix my issues.  Please. 

The flu bug made a quick exit from our house and did not infect anyone else.  PTL!  Hopefully it will be another few years before we have to deal with that crap again.  No pun intended...

Exciting news this week is that Lindsey got her front tooth fixed!  When she was two years old, she did a face plant into the wall and knocked out her baby front tooth. Up until the time the girls were about two, they did not have a full head of hair.  Lindsey had a hemangioma on the top of her head that we used to tell the girls apart.  Shortly after getting a full head of hair, Lindsey lost her tooth and we were then able to use her toothless grin to tell them apart.  Looking back at pictures of her grin just melts my heart!

 

 

When Lindsey's permanent tooth came in, it was bruised and had a "notch" at the top and never grew in as far as her other front tooth.  About a year ago, to make matters worse, she chipped it.  Finally, after asking the dentist for years to fix it, he agreed to this year since it hasn't grown anymore.  He put a nice fancy crown on it and hopefully it will not break!  She loves her new tooth and now her smile is more beautiful than ever!

 

Boy, if you ever want to become emotional, look at old pictures of your kids.  How did they grow up so quickly? 

I found this one of Delaney and Mason "shaking their tail feather" back in Chippewa Falls.  The kids used to listen to music and dance all around the house and we would just laugh and laugh.  Those were the good ol' days.  I think the six months we lived in Chippewa Falls held some of the greatest memories for us.  The girls never had to go to the hospital for a seizure while we lived there.  That was a miracle in itself.  We were involved in a wonderful church and met a lot of great people.  There were three ladies, two of which ended up living right by us, who volunteered to come into our house and watch the twins so that I could go to a mother's group at church once a week.   In addition on Sunday mornings, because the girls were so medically fragile and illness was a no-no, they had volunteers who watched the girls in a room all by themselves so they wouldn't be exposed to others.  I shared our family's testimony at a church event while we were there that showed how God was instrumental in getting us to Chippewa Falls and how His hand was guiding us while we were there.  It was truly amazing.  I have always said that the time we spent in Wisconsin was the most wonderful experience for us.  Well maybe the cold and snowy winter wasn't too wonderful but, the atmosphere and people who surrounded us were such a blessing.  I had told one of  my friends that the only way I would leave Chippewa Falls was if we could go back home to Des Moines.  A couple of weeks later, we got the news that Matt was being promoted to Altoona.  It was bittersweet to leave but, we have some great memories of the time we spent there.   We are thankful to be home and close to our families but, we will always have a special place in our hearts for Wisconsin. 

If you will excuse me, my Kleenex and I are going to continue looking at pictures from the good ol' days.  If you are a mom with younger children reading this, enjoy these years because soon your babies will be teenagers like mine and all you will have are the memories.  Sniffle sniffle... 
    

 

 

 



The dreaded stomach flu crept it's way into our house via Lauren.  I think waking up to a child puking is worse than waking up to a seizure.  That smell....invaded my nostrils all day.  Matt and I shared the duties.  He cleaned the bed and I cleaned Lauren.  Both of us took turns gagging and running out of the room.  I am sure had a hidden video been present, it would have been hilarious to watch.  Hopefully Lauren is the only victim of this bout with the bug.  Keeping our fingers crossed!  Of course, as it usually happens, she was sick on the day of Special Olympic bowling competition yesterday.  She was P.O.'d  and heartbroken all at the same time.  Matt stayed home with her while my parents and I accompanied Lindsey, who bowled a 56 her second game!  She had a blast and was very good about keeping how much fun she had on the down low last night around Lauren.  Lauren is still wondering when it is time to go bowling for school.  I think a trip to the bowling alley is in our near future.  Luckily, she will still get a ribbon from the Special Olympics even though she wasn't able to participate.  She is still home today recovering.  Super Dad carried her toys up from the basement so she is camped out in front of the TV with all of her "guys" and is as happy as can be.  Figured she would be mad that Lindsey is at school without her again but, not the case.  Phew! 

This week we were able to send our "samples" off to Baylor for our genetic testing.  We only needed blood samples for Lauren since they only need to test one girl.  If they do find a gene mutation, they will test Lindsey specifically for that gene.  Matt and I had to give saliva samples...that was kinda gross.  The testing takes at least four months so now we just sit back and wait.

This past weekend a good friend of ours took some family pictures for us.  Needless to say, getting six people to look at the camera with their eyes open and smiles on their faces was challenging to say the least.   It was a good experience and now that everyone knows what to expect, we are going to try it again next week.  I may have a few tricks up my sleeve next time to make things go more smoothly.  A happy pill for the teenage girl and some bribery for the others.  Below are a couple of cute ones of the girlies.  Will put some of the big kids on after our next photo shoot, pending their approval. :)

 

Milestones

Blogging 101... If you are going to quote something, at least make sure you quote it right.  My previous post should have read:  "Not knowing allows room for faith to grow.  Not knowing creates a space for miracles to happen."  Thanks to my dear husband for pointing out my error.  He did it so sweetly as to not make me feel like an idiot.  Love that guy.

 

October is here.  I love this month.  It is a very busy one for us and I think it is by far the most beautiful month of the year.  I love to see God's beauty as the leaves turn such brilliant colors.  Would love to just hop in the car and drive for days to take it all in.  Maybe someday....

 

Today my amazing parents celebrate 54 years of marriage.  As L&L would say, "That is a big number!"  It hasn't been an easy 54 years for them as they faced many trials throughout the years.  But, their love for each other never failed as they persevered through each trial.  They are the best parents a girl could ask for and have set such a great example for me. 

 

 Tomorrow, our precious girls turn 12 years old.  The tears fall as I think about each new milestone we have reached with them.  Eleven years ago when we were given their diagnosis, we had no idea how long we would be blessed to have them here with us.  I am so grateful for a faithful God who has protected them and allowed us to reach all of these milestones.  We do not take one day for granted.   I think back to when we found out we were having twins.  Matt laughed and I cried.  We still have the VHS tape from the ultrasound and the tape is very shaky as I cried and thought, "how are we going to take care of two babies?"  Delaney was 3 at the time and Mason was 18 months, still in diapers.  I still remember Delaney calling our parents and telling them, "Mommy has two babies in her tummy!"  I remember the cesarean delivery when they doctor said, "they are fighting to get out first!"  Lauren was born first with Lindsey a close 30 seconds behind.  They still fight to this day about who gets to go first at everything.  They even fight about who gets to get a shot or blood drawn first.  Thank you Jesus for our girls who have the ability to fight to go first!  Happy Birthday L&L!  

   

 

On the 12th, Matt and I will celebrate our 17 year anniversary.  It was a beautiful day with the leaves turning colors, bright sunshine and warm temperatures.  So warm that our wedding cake started to melt.  We had to hurry up and do pictures and cut the cake before it toppled over.  That was the only hitch in the otherwise perfect day to start our lives together.  I thank God for picking Matt for me and I could not ask for a better husband.  He is faithful, loving, patient, funny, hard-working, an amazing father and my best friend.  I am truly blessed. 

   

 

We close out October with my dad's 75th birthday.  Thinking of my dad just makes me smile.  He doesn't know a stranger and will literally strike up a conversation with anyone.  One day when I was much younger, he conned me into asking a mannequin for directions in a department store.  My friends used to think he was so intimidating as he has this look that could pierce right through you.  But really, he is a big teddy bear and would do anything for anyone.  He is a piece of work and I am so thankful for him.

 

Hello October, so glad you are here.  Blessed beyond measure....

 







Unknown

"Not knowing allows room to faith to grow.  Not knowing creates a space for miracles to happen."

I came across those two statements the other day while reading another special needs blog titled "The Secret in Not Knowing."   My Facebook feed has been full of friends facing difficult times in their family's lives.  Everyday when I turn on the news I hear stories of heartache as lives are lost, families  are torn apart and how our world is full of evil.  It is depressing to listen to such horrible stories on a daily basis and to know that people I know and care for are heartbroken and desperate for God's presence and healing in their lives. 

On our journey with the girls, the question I get asked the most is, "How do you do it?"  My usual go-to answer is "by the grace of God."  Because quite frankly, some days I just want to crawl in a hole and never come out.  When I have reached that point, I know that I am not in this alone and when I have nothing left to give, He gives me more.  Other questions I hear are, "What are you going to do when the girls are older?"  "How do you handle knowing your girls could die from this disease?"  Regarding the first question, we live day by day in this house.  We try not to look too far into the future because we want to focus on today and make the most of what we have right now.  You know the Bible verse  Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough trouble of its own."  Amen to that!  If we spend too much time worrying about what is going to happen in the future, what are we missing out on today?  Memories!  The answer to the third question is simple.  Each one of us is going to die.  We don't know when, how or where.  We choose not to worry about the unknown.  Why worry about something that is out of our control?  It does you no good and takes the joy out of life.  Don't fear what is going to happen next month, next year, in five years.  Not knowing what the future will bring means that anything can happen.  As the above statements say, have faith and know that miracles do happen.

L&L will be turning 12 on October 3rd.  I cannot believe it!  They were just born yesterday...  Lindsey wants a chocolate cake and Lauren wants a strawberry cake.  While shopping for cake mixes today, I came across the coolest frosting! 

 

That is awesome right there!

 

 

Awareness and Awesomeness

We are coming off Mitochondrial Disease Awareness Week and finished up with a fun-filled Savannah's Hope Walk.  Savannah was 17 years old when she passed away.  She had a few quirky health issues during her childhood but, nothing the doctors could really piece together.  In May of 2007, Savannah started having uncontrollable seizures.  Four days after her first seizure, she was placed in a medically induced coma.  Exactly three months later, she passed away.  Her parents did not get a Mitochondrial Disease diagnosis until after her death and were devastated that had they known her diagnosis before she suffered her first seizure, her medical care could have been handled differently and possibly her life would not have been taken so soon. 

Five years ago, Rolland and Willie (Savannah's parents) started Savannah's Hope to help educate doctors, hospitals and families about Mitochondrial Disease as they do not want another child to be a "mystery patient" like their daughter.  Each of the last five years, they have held a walk to honor their daughter, help raise awareness for Mitochondrial Disease and to help families living in Iowa with medical costs incurred from seeking medical care out of state.    They have been a huge blessing to our family and we are blessed to have them in our lives.  Please pray for Rolland and Willie and all of the families who have lost loved ones to this disease. 

Some of you may be reading this and wondering "What is Mitochondrial Disease?"  Since we are finishing up awareness week, I will give you a little crash course and do my part in educating you about this disease that has affected our family.

Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common. 

Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.  Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.

About 1 in 4,000 children in the United States will develop mitochondrial disease by the age of 10 years.   Many diseases of aging are caused by defects in mitochondrial function. Since the mitochondria are responsible for processing oxygen and converting substances from the foods we eat into energy for essential cellular functions, if there are problems with the mitochondria, it can lead to many defects for adults. These include Type 2 diabetes, Parkinson's disease, atherosclerotic heart disease, stroke, Alzheimer's disease, and cancer. Many medicines can also injure the mitochondria.

Below are the two different ways Mitochondrial Disease is inherited.

Maternal inheritance

A mother with a mitochondrial DNA gene mutation will pass this abnormal gene to all of her children. The children will all be affected, with different degrees of severity. This is called maternal inheritance.
This does not mean that the children are going to be affected in the same way as their mother. It is not possible to predict how the children will be affected. This creates a lot of stress for those who are planning a family.

Autosomal recessive inheritance

The nuclear DNA in mitochondria is inherited from both parents (half from each parent). Mitochondrial disease can be passed on only if BOTH the mother and father are “carriers”. This means that they carry the mutated gene, but not the disease – so they don’t have any symptoms. This is called autosomal recessive inheritance.
When both parents are carriers, there is

• a 25% chance of having a child with the disease
• a 50% chance of having a child who is a carrier like the parents (has the mutation, but not the disease)
• a 25% chance of having a child that is not a carrier and does not have the disease

In our family's case, it is almost certain that we have an Autosomal recessive inheritance.  Unfortunately, at this time, we do not know which exact gene mutation we have. 

At this time, there is no cure for Mitochondrial Disease.  

Thanks to www.umdf.org and www.mitocanada.org for the educational information above. :)

Now this paragraph is being written 24 hours after the above.  As I was typing (well copying and pasting) the educational material above, I received a call from our Geneticist's office in Pittsburgh.  When we were there in June, we discussed at length about having whole exome gene testing done on both the girls and Matt and I.  We all left blood samples there anticipating the test.  They submitted the request to our insurance company and it came back with our out-of-pocket expense for the testing in the thousands of dollars.  Needless to say, we were bummed and declined the testing.  Thankfully, our Geneticist's office did not give up and followed up with our insurance company again and asked for them to make an exception.  To make a long story short....they agreed and we can now have the gene testing done with no out-of-pocket cost!  Needless to say, I was in tears... Praise God!

What does this mean?  This means we have a 30% chance of finding what gene mutation we have passed on to the girls which caused their mitochondrial disease.  30% is the number they quote but, our doctor has seen better numbers than that in the testing they have done in the past.  This means that if the mutation is found, we can have Delaney and Mason tested to see if they are carriers of the gene.  This could also finally give us a definitive diagnosis for our girls and in the future if clinical studies are needed for patients with their type of disease, they could take part.  They can also use this information for research which will one day hopefully make them one step closer to finding a cure.  This is definitely a step in the right direction for our family and we are thankful that our doctors were willing to fight to help us get the testing done!

So now when you hear the words "Mitochondrial Disease" you can say you have heard of it and you may even be able to tell someone what it is.  Hopefully sometime in our lifetime, we will be able to celebrate the day a cure is found.  If you want to learn more, I encourage you to click on either of the links above as they both have a lot of great information.  

I am happy to report that the link to subscribe by email worked.  My notification came a day after I updated but hey....it worked!  If you want to subscribe to my ramblings, scroll clear down to the bottom of the page and input your email address.  Maybe I will get the hang of this after all...

We are coming off of one crazy week.  Needless to say, I am happy a new week has started and hopefully it will be less stressful and adventuresome.  Last week's chaos was caused by our "healthy" kids.  I guess I take their good health for granted and God just needed to remind me that they are fragile sometimes too.  Delaney has been having some shortness of breath and hard time breathing in.   Last week she had a chest CT scan looking for a pulmonary embolism which a blood test came back positive for.  Praise God the CT scan showed no clot.  Doctor said sometimes that test comes back with "false positives"...  Talk about scary!  She had an echocardiogram and a pulmonary function test  on Friday which we will hopefully get the results from today.  Then, Wednesday night at football practice, Mason took quite a shot to the side of his head and ended up with a mild concussion.  He sat out of football and PE the rest of last week and was hoping to head back today but, failed his jumping jack test the doctor made him do.  So now he gets to sit out a couple more days at least.  Hopefully he will bounce back quickly and be good as new.  That is some scary stuff seeing your kid forgetful and dizzy.  Needless to say, we don't want to see another one of those happen.  Mama Bear would have a hard time letting him play again.  And to top off our crappy week, the Cyclones lost to the Hawkeyes....

The girlies had a couple of exciting adventures last week.  Now that they are at the Jr. High, they get to participate in the Special Olympics!  They will be in the bowling competition in October so this past week they were able to get out of school two days to go bowling for practice.  Talk about lucky ducks!  They had a great time and did really well.  Lauren did get a little overstimulated both days and had a seizure shortly after arriving but, being the true Rock Star she is...she recovered quickly and bowled the rest of her games.  Lindsey bowled for her while she was recovering and thought that was pretty awesome to be able to bowl double time.  Then yesterday, their dance classes started for the fall.  The girls are in a program called "Dance Without Limits" through the Des Moines Ballet.  It is specifically for children with special needs and we are so thankful we learned about it last spring.  Talk about a tear jerking experience....to see those kids out there dancing and having such a good time is priceless!  I don't think there was a dry eye in the place at their recital last spring. 

Now getting to have the bowling and dance experiences last week really opened my eyes to see the awesome people out there who work with kids with special needs.  The aides that accompanied the kids to the bowling alley were caring for their school kids like their own and cheering for them when they bowled....even if they got a gutter ball.  Some of the kids are severely profound and can do nothing to care for themselves.  To see the excitement the kids had to be there bowling and to see how excited the aides were for them just really warmed my heart.  It makes me realize that when I think our lives are impacted greatly with the girls' disability, there are others who are facing even greater challenges and really, we don't have it that bad.  I need that reminder sometimes.  Bless the aides who spend their days caring for these kids while they are away at school.  Now at dance class, it is a group of teenagers/young adults who volunteer their time to help teach the kids how to dance.  These girls are students who have dance classes numerous times a week for themselves, go to school full time and still take time out of their busy schedules to work with our girls and others like them.  They do it because they want to, not because they have to.  Now I think that is just awesome and it is so cool to watch them interact with the kids.  They always have a smile on their faces and they genuinely want to be there helping them learn to dance.  Their parents should be so proud. 

So even though it was a stinker of a week, I am thankful for God's protection over my children.  My learning experience was again to be reminded to never take anything for granted; especially the health of my children.    And, that He put some really special people in this world to help care for some really awesome kids.  Lastly, even though the Cyclones didn't beat the Hawkeyes....there's always next year to look forward to.

First off.  My apologies to those of you trying to subscribe to this blog.  I somehow managed to find a way to allow you to sign up for email updates, I think.  You have to scroll clear down to the bottom of the page to find it.  Once you put in your email you have to type in those cryptic letters and then they send you an email and you have to verify the link.  I can't say that they make this very easy...or maybe I am just blog writing challenged.  Regardless, I hope it works.  Also, for those of you who tried to leave comments but could not, I hopefully fixed that problem too.  I am used to our Caringbridge page which I must say is very user friendly compared to this!  Hopefully all of the kinks are worked out and if not, I will Google some more FAQs...


With the anniversary of the 9/11 attacks today, I once again find myself in a somber mood remembering that fateful day 12 years ago.  I was great with child(ren) as I was 3 weeks from delivering L&L.  I remember I was in our bedroom with the TV on and watched as the 2nd plane flew into the World Trade Center.  I stood there in a awe and disbelief.  It is a day that none of us will ever forget and unfortunately, has forever changed the world in which we live in.  Back in 2009 while in Pittsburgh, we traveled to the Flight 93 crash site.  It was sobering to be standing by the field where the plane went down.  The memorial site was covered with pictures, flowers, flags and all kinds of other memorials that people had left behind.  There were also 40 wooden angels in a row for the crew and passengers who lost their lives (pictured below).  I still get chills when I watch the TV shows recounting the ordeal and hearing the voices of the passengers who called their loved ones and hearing the chaos in the cockpit as the plane was being taken over.    

 

 

 

We will never forget that fateful day when nearly 3,000 innocent people lost their lives and we pray to God that we will never have to experience a tragedy of that magnitude ever again.  God Bless America and God Bless those who lost their lives, their families they left behind and all of the rescue workers who witnessed the tragedies firsthand.  It was hard for us to watch it on TV.  I cannot even fathom seeing it unfold in person. 

 

This anniversary is always a great reminder to be sure to say "I Love You" to those you love and let them know how much they mean to you.  Also, a great reminder that in an instant, our lives can be taken away from us.  Never take anything for granted, don't let the pettiness in life come between you and a loved one or friend.  Life is short, friends.  Don't live it with any regrets.  And last but not least, thank God for each and every blessing He has given you.  For without Him, we have nothing.     

Patience...

 

After a particularly rough long weekend, I was jogging around this beautiful lake on Tuesday with Pandora 80's Rock Radio blaring in my ears and one of my favorite Guns N' Roses songs came on.  You might have heard of it...Patience.  You know the one with the great whistle solo in the beginning.  As I was making my way around this beautiful lake reliving the weekend and recounting how many times I lost my cool with my kids, Patience just happens to start playing.  Now the song has nothing to do with having patience with your kids, it is about a man and a woman in a troublesome relationship.  I just found it ironic that here I am thinking about how I lost my patience on multiple occasions and here's a gentle reminder in my ear that "all we need is just a little patience."  Well sometimes we need a whole lot of patience and then just a little more patience!  I would say that God placed that song in my ears at that moment but, He probably isn't a fan of Guns N' Roses.  I do think it was His gentle reminder that I need to work harder at asking Him to give me "just a little patience" when mine has been exhausted.  

 

Now in the above paragraph I use the term "jogging" loosely.  People with long legs walk faster than I run... I have loathed running since I was in high school and had to run a mile under 10 minutes to make the volleyball team.  In fact, that would be about the only time you would find me running.  I have always wanted to be able to run long distances but, never had the willpower to do it.  When I turned 40, I really wanted to be able to run a 5K start to finish.  It was one of those bucket list things.  I signed up for The Color Run and started training.  At first I ran a couple of blocks and thought I was going to have a heart attack.  I kept working at it and eventually got to where I ran 5 minutes without stopping.  Whoever said running is 99% mental was right on!  I eventually made it one mile, then two and finally one day with the help of my friend Jane, I ran 3.1 miles without stopping!  I wanted to stop, believe me...but, Jane kept saying, "you can do it, keep going!"  And as I was running, thinking I was going to pass out, my thoughts wandered to two little girls who would give anything to be able to run a block.  Here I have the God-given  ability to do it and I was whining about how tired I was.  They would love to be able to run, play sports like Delaney and Mason and play at the park like all the other kids.  But, that right has been taken away from them by this stupid disease.  So, I kept going and I did it...for them and for me.  

 

Three days before The Color Run, I tore my plantar fascia in my left foot.  I completed the race with the help of two Aleve's and some tape.  I couldn't run the whole thing like I had hoped to but, nothing was going to stop me from trying.  After the race, I ended up in a walking boot and the ability to run was taken away from me for 6 months while it healed.  I thought about retiring my running shoes but, two little girls kept coming to my mind.  So... I dusted them off and laced them back up. Now when I am out there "jogging" around that beautiful lake thinking I am about to pass out, I think of them and Jane's words "you can do it, keep going!"   I have yet to run an official 5K race from start to finish.  Someday I will...for them and for me.

 

 

 

 

The B Word

Well that title got you thinking...didn't it?  No, I am not talking about "that" B word.  This B word is "Baby."  Now "Baby" is known around here as Lauren's naughty word.  You know you are in trouble when Baby starts coming out of her mouth.  You are in serious trouble if Baby is used more than once in a sentence.  You know how a triple dog dare is the worst dare there is, well triple Baby used in one sentence is a recipe for disaster.  All kidding aside...the last few days, the Baby has been flying out of her mouth like never before.  Add to the Baby some slapping, kicking, screaming, door slamming and overall really bad emotional outbursts and that is "out of control Lauren."  Sometimes these outbursts are triggered by something happening that she does not like or if she cannot find something that she really wants.  Other times they come out of nowhere.  Sometimes an outburst is followed by a seizure and we wonder if she is feeling something inside that she cannot communicate to us. Regardless, this has to be the most stressful part of dealing with her disease and brain injury.  Believe me, we have been very creative in trying to deal with them.  Sometimes they work, other times they don't.  It is exhausting, emotionally draining and something I wish we could find a way to stop.  Our last trip to the Neurologist left us feeling defeated as he stated that as the girls get closer to puberty, the emotional issues are going to get worse.  And unfortunately, so will the seizures.  Definitely not what we were wanting to hear.  If by chance any of you reading this have children with emotional outbursts that have found some creative ways to bring them under control, please share with me.  Time out does not work; we have tried.  It only makes her rage worse.  We have tried re-directing to another activity but she fixates on what triggered her in the first place.  The thing that has worked the best is to snuggle with her but sometimes that can't bring her back under control and she continues to scream and hit.

Now don't get me wrong, Lauren is not always the crazy girl I have just portrayed her to be.  She is also the sweetest young lady who will tell you countless times "I love you" and loves nothing more than to snuggle, especially with her daddy.  She is definitely a daddy's girl.  There was one day she came up to me and gave me the biggest hug, looked right into my eyes and said, "I love daddy."  I just smiled back at her and told her that daddy loves her too.  I will never forget that moment.  Priceless!   The person that takes a close second to daddy is my mom.  I have nicknamed her "The Lauren Whisperer."  It doesn't matter if Lauren is completely out of control when she starts talking to Grandma on the phone; by the time she is done, she is completely calm and back to her sweet self.  At least until Grandma hangs up...  Grandma Rose sings to the girls and when Grandma sings, all is well in the world.  So thankful for her and her ability to calm the raging seas around here! 

Our dear Lauren.  The girls who loves to play with her toys, watch TV and snuggle.  She could also win a belching contest, takes no prisoners while wrestling with her dad and siblings and kicks our butts at Wii bowling.  She is one of a kind and I love her to pieces.

 

Sibling Love

First of all, thank you for the words of encouragement.  Brought a smile to my face and made my heart full of love.  I hope I can live up to your expectations with the ramblings from my head. 

As I thought about what to write about today, that sneaky little thing called "mommy guilt" made its way into my head.  Do any of you deal with that ugly feeling?  I dislike it and how it makes me second guess my feelings and actions.  So, to deal with said mommy guilt, I must talk about my two equally amazing, equally loved older children who I feel sometimes think they come second, well actually third and fourth, in our family.  When your life gets turned upside down like ours did eleven plus years ago, priorities get changed and well pretty much your life as you knew it is gone.  Your main focus becomes dealing with the chaos that comes with children with a life-threatening disease.  The girls have demanded a lot of Matt and I's attention and I know Delaney and Mason have been pushed aside on many occasions.  Am I proud of this, no.  Do I hate this, yes.  Would anyone else in the same position do the same thing, I would think so.  But still, you can't help but wonder if you have failed them somehow.  With that said, I am pushing those ugly thoughts out of my head and telling "mommy guilt" to go pick on someone else today.

Our first-born Delaney Marie, the Firecracker, is the description that comes to my mind.  She came into this world 2 1/2 weeks earlier than her 4th of July due date.  She has been strong-willed from the start but, that is what makes her the treasure that she is.  Delaney was almost five years old when the twins got sick.  She has a hard time emotionally dealing with their illness.  Back in the early days when we called 911 on a regular basis and the ambulance would take the girls to the hospital, she would run to our neighbors house where she felt safe.  After the chaos was over, she would come back home.  I know it is heartbreaking to her to watch her sisters struggle and if she had one wish, it would be to make them all better. One thing that I love most about Delaney is that she does not leave the house or go to bed without saying, "I love you."  Oh how I treasure hearing those words.  Although sometimes she goes off like a firecracker, she has a heart of gold and will do anything for someone she loves and cares for.  We have had our fair share of knock down drag outs but, I wouldn't change a thing about her.  She is strong, passionate and is not afraid to fight for what is right and what she believes in.  I admire her for that and love her more than words can say.  She is going to go places in this world. 

Mason Dean is the soft-spoken lone boy in the middle.  Delaney and I joked one day that her lack of patience was gifted to Mason.  She just can't understand how he is so patient.  The poor kid has to be to put up with three sisters!  He does not like confrontation, does not like to disappoint or be disappointed and he loves playing video games.  He is a gentle soul who has a soft heart for his little sisters.  While Delaney is scared of the girls' seizures, he is not.  He is my "go to" man when an emergency strikes and always stays calm.  One particular day, we were outside playing in the front yard and Lindsey had a seizure.  Mason ran in the house to get the oxygen for her and when he came out, he heard me yelling, "Two, I need two!!" as about 15 seconds after Lindsey went down, Lauren followed with a seizure herself and also needed oxygen.  The poor kid ran back in, grabbed the 2nd oxygen tank from upstairs and came back out winded and threw himself on the ground.  After he caught his breath and took in the environment with his two little sisters lying on the grass he said, "It looks like Call of Duty out here..."  It did look like a battle zone and we still chuckle about that crazy afternoon.  Mason, my lone boy who holds a special place in my heart.  The young lady that captures his heart someday is going to have a wonderful husband and I know he will be a great father.  Oh how I love that boy. 

So Ms. Firecracker and Mr. Patient, our two great kids who have learned many life lessons at a young age.  I hope that when they grow up and have families of their own, they will look back at their childhood and know that we loved them unconditionally and never, ever were they second fiddle.

My husband thinks we need to have a reality show based on our lives.  This is the closest I want to come to bearing the soul of our family.  So here I am entering the blogosphere.  For the past few years, I have recounted our family's journey on a Caringbridge site for our twin daughters.  A good friend of  mine has told me for years that I should "write a book" about our many adventures in life dealing with two little girls with a really big medical condition that has forever changed our lives.  That "book" begins today.  Seizsters:  Two Girls....One Journey.

Many of you know our "story" but; for those of you who may not, here is a little background.  My husband, Matt, and I have been married for almost 17 years.  We were blessed with four beautiful children.  Delaney is 16, Mason is soon to be 14 and Lauren and Lindsey, our identical twins, will soon be 12 years old.  Add to that our dog, Scooby, and our family is complete.  Back in 2002, when the twins were just six months old, our lives were forever changed when they started having uncontrollable seizures.  They were healthy babies up until the age of six months when the first seizures struck.  After many seizures and many hospitalizations, at the age of one year, the girls were diagnosed with a little-known disease called Mitochondrial Disease.  You may be saying, "mito what?"  Believe me...so did we.  As soon as I heard the words, "progressive and incurable" spoken by our doctor my brain stopped listening and my body went numb.  And that is when our journey with Mitochondrial Disease officially began.       

Fast forward 11 years and here we are today.  The girls are still having uncontrollable seizures.  They are developmentally delayed because of them and their underlying disease. They face a giant, uphill battle every day of their lives.  What you will also see today are two resilient, almost always happy, sometimes moody, loving little girls who will say "I am so lucky" because in their lives....there are no small things.  They don't see themselves as two little girls with a really bad medical condition.  They see themselves as two little girls who are so lucky they get to go to school, watch their favorite shows on TV, get to snuggle with their mom and dad and talk to their grandma and grandpa on the telephone.  What I see are two little girls who have touched the lives of nearly everyone who has been blessed to meet them.  I am blessed beyond measure to be their mother and look forward to sharing the laughter, tears, heartaches and heartwarming stories of these two little girls who have a whole lot to say.