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.