Happy 63rd Birthday Mom!

My Mother was born, a beautiful baby girl who grew up to be a beautiful woman both inside and out. I miss her so very much. I still remember every detail of her face, how she smiled as she baked in the kitchen, and watching her give her grandkids the biggest hugs ever!

While she's not here with us, we know she is celebrating her special day with the angels in Heaven.

Much love to you, Mom!

Happy Birthday!

This Sums It Up Perfectly!

It's a GO... August 1st.

Mike's surgery is scheduled for August 1st. In a nutshell, it's - literally - brain surgery. They will not only go in and try to "fix" the Chiari to alleviate some of the symptoms that affect his daily life, but they may also attempt to put a shunt in the spinal cord to drain the spinal fluid that is pooling and causing the numbness, tingling, and tremors in his hands.

Reaching Out For Prayer...

As I'm sure many of you are aware, there is never a dull moment in our house, specially when it come to medical things.  My husband says that it's like it comes in waves.  We go through a few months of chaos then a few months of calm and it's set on repeat!  This time is different though...  this time it's him.



Michael started having headaches again several months back.  I noticed him complaining of the more, but he told me I was crazy.  Back around Christmas I even started tracking them and then told him I thought he should call the doctor.  He, of course, refused....  "I'm fine...." is what I got.  The last (roughly) three momths he's had a "haziness" about him in addition to the headaches, and he said a few times it was like he felt "out of his body".  Again, I said PLEASE call the doctor....  again, he refused.



These headaches have progressed to almost a constant 5/10 headache and a numb feeling in his fingers.  Several days a week it comes with the "haziness", inability to focus, and the headache becomes "a headache that puts all migranes to shame", and at times he has trouble putting his thoughts into words coming across somewhat choppy and confused.  Mike is also dealing with some tremors in his hands and balance issues that come and go.



Wednesday May 30th, it all came to a head and he finally gave in... his symptoms caused him to be nearly unresponsive for a short period of time.  He was unable to speak or move, and just looked at me as if he was terrified and trapped in his own body.  When he came out of it his symptoms were pretty bad and even scared him.  From May 30th to now has been a whirlwind of appointments with the family doctor (who thought he was having strokes!), neurologists, and now a neurosurgeon. 



One week ago today (June 21st) the neurosurgeon told us that his CINE MRI series of his brain, spine, and cerebral spinal fluid confirmed that Mike has Chiari Malformation with Syringomyelia.
In layman’s terms:

Chiari Malformation happens when for some unknown reason, the cerebellum begins to herniate through the base of the skull into the opening of the spinal cord, “jamming things up” so to speak.  Mike’s also has cerebral spinal fluid (CSF) building up IN the spinal cord . He has the CSF building up (Syringomyelia) from his T2 to his T10 vertebrae currently.  This is what’s causing his tremors, numbness in the hands, tingling in the hands, and it’s also now causing the debilitating headaches – the headaches that Mike describes as “headaches that put any migraine I’ve ever had to shame”. Essentially they are spinal headaches.  Chiari does not always present with this CSF buildup, but when the CSF is collecting abnormally on the spinal cord and there is a Chiari it is typically the result of the Chiari blocking CSF from flowing through the brain properly. 

Our options are not easy to choose from...

He can leave it alone and do nothing. There is no medication to treat this disease though and medications to treat symptoms don’t eliminate the symptoms, only lessen them so he’s not AS miserable. The problem with leaving it alone is that the CSF can slowly continue to build up in his spinal cord causing progressive numbness, weakness, and could eventually even lead to partial or complete paralysis.   No one can tell us how fast it would progress, just that it is a progressive disease.... no 2 people progress at the same rate or the same way. We really don’t even know how long he has had this disease other than we have copies of his MRI reports from 2001 and it was specifically noted that he had no chiari at that time.

He can have a surgery that is not guaranteed to work. They take out a piece of the lower skull to access the cerebellum and somehow use a synthetic type of material to “lift” the cerebellum back where it belongs, give it more space, and alleviate the herniation. They would also literally open up the lining to the spinal cord up near the brain and “clean it all out” to make sure there isn’t anything in there that’s contributing to the problem. All of this will allow the CSF to freely flow the way it should. It may or may not alleviate the CSF that is built up in his spinal cord, it doesn’t always go completely away. They may be able to insert a shunt into the syrinx to drain it, but they won’t know until they get in there and see it all. The surgery may alleviate some of his symptoms or all of them, but the damage that’s been done by the syrinx to the spinal cord is IRREVERSIBLE... so the numbness, tremors, and tingling he feels in his hands will not go away regardless of surgery. Surgery MAY keep it from progressing. Some people have the surgery and there is no change in function at all. In addition... even if the surgery does work and he feels better, the Chiari could come back and he could find himself right back in the same place. Again, they can’t tell us IF this would happen or if it does how long the period of relief would be. Everyone is different.... no one knows.

Risks of the surgery are scary...  it’s brain surgery! It’s not an easy thing. The surgeon could make a mistake and knick the cerebellum or spinal cord causing anything from stroke to paralysis. Scar tissue could form inside the lining to the spinal cord causing it’s own damage. He could come out of it paralized, unable to swallow, unable to speak....  Yikes!  There are just no guarantees.  Infection is always a risk also – with any surgery. Recovery is long and painful because of the way the surgery is performed. He would spend at least the first day in the ICU and then spend 4-6 additional days in the hospital depending on how he does and his pain level.

There are no easy answers or decisions.




We are asking for prayers for guidance to decide whether or not to go through with the surgery, and Mike is asking also for prayers for courage to "pull the trigger" if surgery is the right thing to do. 



Thank you for your love and support!

Love Love Love 'Love Lee Photography"!

Ramie Lossman from Love Lee Photography took Kayleigh's senior pictures and did such a great job we thought she may be up for a bigger challenge....  a photoshoot of the entire Lyons family including both Mike's Dad and Judy as well as his Mom, Mary.  I think she did pretty good....  what do you think?

Congratulations Kayleigh!!!

Saturday, Kayleigh graduated from Ronald Wilson Reagan High School!  It has been such a joy to watch her grow up into a beautiful, smart, strong, faithful young lady!  Congratulations!  We can't wait to see what God has planned for your next journey in this thing called life!

Kayleigh's Senior Recongition Day

Kayleigh was one of several seniors awarded scholarships and recognition at Reagan High School today.  It was beyond bittersweet!

One special scholarship being awarded was the very first Nicholas Doub Scholarship in memory of her dear friend, Nick, who died after a tragic car accident last January.  The scholarship went to someone who exemplified the same qualities Nick had...  faithful, friendly, loving, strong, courageous, and so much more!  Mitch and Carla Doub were there today to award Kayleigh with that scholarship!  She cried many tears and so did we!  This was so much more to her than "just another scholarship", it was about remembering her dear friend whom she misses so very much!

Kayleigh was also recognized for earning 2 scholarships to the Arts Institute of Colorado (one for the Storyteller's Contest, and one for the High School Senior Scholarship), and for earning an admission scholarship to the University of Chapel Hill at Charlotte.

She and two of her close friends, Luke and Peyton, had the opportunity to sing Rascal Flatt's "Stand" during the presentations, and then she sang "Good Riddance" (aka "I Hope You've Had the Time of Your Life") in a group at the very end.  While she was on stage with her friends that last time it hit me...  this is the last time I will ever get to see my baby girl perform on that very stage, and then it became hard to fight back the tears!

Yep...  it's happening...  our second child is graduating and we couldn't be more proud fo her!!

They Finally Meet.... Face to Face!

We "met" Kayla through an online support forum called "Dinet" almost a year ago.  It's a place for patients and families of Dysautonomia patients to come together for advice, support, and friendship. For the last several days, Kayleigh has been facebook messaging and texting Kayla like crazy because Kayla has been in a children's hospital after an acute episode of her disease.  She's had a tough time this week with unanswered questions and doctors who just know little about the disease.

So....  Kayla's Mom and I arranged a big surprise for this afternoon.....  the girls FINALLY met face to face!  Kayla's Mom, Crystal, met us in the lobby and took us up.  She looks more surprised than Kayla!  I think Kayla was just in shock and not sure what to think! 

The girls talked for almost 2 hours about their disease, what they've experienced, their frustrations, what's worked for them, what hasn't, and more!  I'm so very thankful that they have eachother to lean on with such an "invisible" disease that isn't understood by many!  Certainly a blessing for them both to have eachother!

3 Months in 1 Post!

Wow...  I have REALLY been slacking on this blog thing!  I'll try hard to wrap up 3 months of Life in the Lyons family in one post....  So here goes it!

We spent a great weekend in February with Mike's family in Cleveland, OH to celebrate his Dad's birthday!  Kayleigh, Grandma, Aunt Tricia and I visited the Art Museum in downtown Cleveland while the boys went to Zach's basketball game.  After returning to the house....  it was chili cookoff time!  Mike came in 2nd....  but we had a blast watching his Dad be fed while blindfolded!

Devin left Cleveland a little early and went to visit my Dad in Kentucky for a few days.  On his way home he had a bit of an accident....  he hit a deer less than 5 miles from home!  Poor kid crunched the front of his Rodeo!!

March 11th Kayleigh had her senior pictures done by Ramie Lossman from Love Lee Photography.  Little did we know what a blessed day this would be!  Not only was Ramie AWESOME, but she is going to start having Kayleigh help her out now and again!  This will be GREAT experience for Kayleigh, who plans to make a career in photography. 

 

My Dad and Cassie came to visit for Easter this year.  We enjoyed a nice walk through Tanglewood Park and a relaxed Easter just visiting.  Of course....  Grandpa had to be a big kid for a little while though...

April 12th and 13th were somber days.  April 12th marked 1 year from what we call "D-Day"...  the day Kayleigh first collapsed and it's thought it was the first time her heart stopped.  April 13th marked 9 years since my Mom left us.  On both days we remembered what we are thankful for though.  We are thankful that here we are, 1 year after that dreadful day with Kayleigh, and she is doing well with her treatment plan and as healthy as we could ever hope for after all she's been through.  We are also thankful for the many years we had with my Mom, and for all that she taught us about loving and living like you may not have tomorrow.

April 17th....  well....  that's a day that we never though we'd see....  but we will always remember as one of the proudest days we've had as parents of Devin.  It's the day that he officially swore into the Unites States Army!  Currenlty, Devin is scheduled to leave October 2nd for Fort Sill, OK for Basic Training, and after that he will go to Fort Lee, VA for a 38 week AIT in explosive devices.....  WOW!  I'm sure I'll post more on this in the future as things happen and as we process it all!

April 21st we lost Mike's Grandma Lyons.  She was a beautiful, Christian woman that taught us more in her final hours about forgiveness than we've learned in a lifetime so far!  Why?!?  Well....  she was the victim of a senseless mistake at the nursing home she lived in on the 18th of April.  This mistake caused injuries that she simply could not recover from and left many of us in the family angry and resentful towards the CNAs who were responsible.  BUT...  in her last few hours of being awake, Grandma asked for prayer....  not for her....  but for the CNAs!  This was her way of saying she forgave them for what happened....   afterall.....  doesn't Jesus want us to forgive those who trespass against us?  What a lesson she showed us!

After getting home from saying our goodbye's to Grandma, I was able to escape on a weekend with the girls to Myrtle Beach.  What a BLAST!  We had fun at Broadway at the Beach, sang karaoke, rode a mechanical bull, ate lots of good food, enjoyed the sun, and even did some shopping!  Lots of memories and made many new friends while I was there!!

That brings us to Mother's Day Weekend!  I had a great Mother's Day!  The kids fixed me breakfast and Devin later took me to a Mother's Day Brunch at Riverbirch Lodge.  After we got home we watched The Muppets together (all of us) and then Mike fixed one of my favorite meals, "his" pork stir fry!  YUM!  Felt very loved by all!! 

So......  there ya have it!  3 months in 1 post!  I'll try to do a better job from here on out!

Wow! God Is SO Good!!

I don't want to get into too much detail, but we are in awe tonight of something God put into action! We found out yesterday that Devin was officially accepted to Liberty University in Lynchburg, VA; a very good Christian college. We are VERY excited for him... but just as soon as the excitement hit us, reality hit us harder.

We have TWO kids going to TWO private colleges in the coming months! HOW are we going to pay for THAT?!?

As I went to bed last night, I said out loud, "OK God.... if this is Your plan, show us how that we are going to be able to make it all work without moving into a 2 bedroom shack and eating mac 'n cheese, rice, and beans for the next 4 years and that You have it under control." (Yep... I said it just like that!)!

Well... today He showed us that we can trust in His plan.

A church member, who shall remain nameless, sent Devin a VERY heartfelt long letter. We don't know this church member well, but he was very touched by the struggles Devin has had the last year and how Devin has overcome them. He also recently realized that Devin's sister is Kayleigh, the girl our whole church has been praying for during her recent health struggles. It was then that he decided to help Devin out in a way that has left us speechless. This persons donation to Devin's education will cover the cost of books for his first semester!

Speechless....
Grateful....
Humbled.....

In the letter this person said to not think of it as him giving money to Devin Lyons... but, instead, it was God using him to help another family.

This person is right, but in a way that I bet he didn't even think of. He is right because He, through prayer, followed what he felt God was leading him to do, to help Devin out a bit.

But, he also helped Mike and I realize that God has it ALL under control! It was the answer to my "conversation" with God last night. It was God's way of telling me that He has it ALL under control!

Wow!

New Year... New Me!

We kicked off the new year with our dear friends, Neal and Dawnya Taylor-Schroeder. This has been a tradition for the last 3 years now and we always enjoy our time with them! This year we spent time around the house, bowling, eating, praying, reminiscing, and hiking!

While they were here, Dawnya and I spent a great deal of time talking... sorting out decisions we've made in the last year, how they've affected us, what situations crossed our paths, and where we were with our faith and what we felt like we needed some help with.

For me, I confided in her that I was feeling very unsure of myself and over-extended. We have had a LOT thrown at us in the last year, especially over the last 6 months. I have tried very hard to face it head on and stay strong for my family; but truth be told, it's really been wearing on me. I asked Dawnya (who has been VERY active in her church over the years and has faced some issues of her own in the last year) "how do you know when it's time to give up something or when it's time to step back from something you're doing in the ministry?". We talked about making sure we were doing things for the right reason, and really praying for clarity and direction. New Year's Eve, before we went to bed, she and I prayed together that we would both see a clear view of what God's path for us is in 2012 and that we would obey his direction.

Woke up New Year's Day and headed to church and things became VERY clear! Our Minister of Discipleship preached that morning, John Williams. I love it when he preaches because it always hits home for me in one way or another. Maybe it's because he and his wife Laurie have 4 kids who are always in and out of the doctors office or ER like ours... or maybe it's just because God uses him to speak exactly what I need to hear when I need to hear it!

That morning was NO different. John talked about how in Revelation 2:3-4 the Lord says "You have persevered and have endured hardships for my name, and have not grown weary. Yet I hold htis against you: You have forsaken the love you had at first.". In plain terms... the Lord was saying to the church of Ephasus: 'YES, you have done good things, taught of Me, and endured much hardship along the way.... but you forgotten that I am your first love!' It's all about doing the right thing... but doing them for the right reasons!

I'm reading a book right now called "The Christian Atheist: Believing in God But Living As If He Does't Exist. In the first chapter the author, Craig Grosche, talks about that realization when he says "And as my love for ministry burned hotter, my passion for Christ cooled". He was doing all the right things! Preaching, loving, serving, praying, ministering... but he forgot about his passion for Christ, the REASON he was doing all of those things.

I guess what I'm getting at is the "New Me" part. I have been serving in the youth ministry for two years now and I have LOVED it! There isnt' much that tears me away from Sunday nights. Since getting involved with them, I have had a passion to be there and love on those kids! But, since November when we were slammed with the news of Kayleigh being sick yet again, I have changed. The strong Mother that most of you are most familiar with became weak, angry, and frustrated. I even wrote a blog about it where I said "I am NOT OK!". After listening to John Williams on New Year's Day and then reading it again in Craig Grosche's book, I quickly realized that Sunday night youth group is where I needed to step down from. If I'm really being honest with myself, for the last few months I've been there for ME and not for the girls. I've been there for the worship and prayer time because it made ME feel better about where we were at in our life. When I realized this, I realized that I really am in no position to LEAD others right now, but I need to be led and fed spiritually ....

So, last Sunday, I tearfully said goodbye to my High School Girls Group 1 for a while.

This year, specifically this next 6 months, my focus is on rebuilding my own heart and faith and preparing to send off 2 of my 4 children to college and enter a new phase of my own life. I'm excited to get back into The Truth Project on Monday nights with dear friends, and I'm excited to continue studying the Word in a great small group led by the Lydick's.

I surely will miss Anna, Savannah, Hannah, Charity, Madison, Alex, and Elisabeth. But, I know that God has big plans over the coming months!