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!

I Am Not "OK"...

Many have asked me the last few days "How are you?". My response is usually "I'm ok... just tired."

But if I'm keeping it real. I am not ok. Period.

I am angry.
I am sad.
I am frustrated.
I am tired.
I am worn out.

I am angry about of all the "junk" that has happened in our family in 2011! We have endured everything from the loss of best friends, to serious illness, to job changes, to troubled teens, to financial chaos, to stress in our marriage... we've seen it all. Way more than what I (selfishly) think should be our fair share!

I often feel sad and alone. I feel like I have to be the one in the house to keep things light and airy when things go wrong. I am usually the optimist in our house and Mike is more of a realist with a tad of pessimist thrown in now and again. Sometimes, I need the ability to just fall apart into someone else's arms for support and love. I am tired of being the happy strong one.

I get frustrated when I constantly hear people say "I don't know how you do it" or "you are so strong". Everyone assumes I am so strong and have it all together. I do not. I promise you.

I am tired of constantly worrying about what is around the next corner that is going to hit us head on! I am especially tired of seeing my daughter endure so very much at such a young age! Yes, she does it with grace and faith like none other.... but I am sure that even she.is.tired!

I am worn out plain and simple.

Tonight, I keep reading over and over Matthew 11:28... "Come to me, all you who are weary and burdened, and I will give you rest."

Father God, our family is weary. We are tired. We need Your help for peace and rest. Amen.

"Just Suck it Up"...

These are words I will NEVER say again to any of my kids. Let me start from the beginning...

Kayleigh's boyfriend, Justin, flew in on Tuesday from Colorado. She hasn't seen him since June, when she was still one very sick chickadee! She spent most of Tuesday through Saturday with him other than to sleep, so Mike and I hardly saw her at all. Saturday afternoon I picked her up to take her gift registry shopping with a dear friend of ours. Throughout the store she was very quiet. She did complain on and off about feeling tired and getting short of breath easy. She said it started Friday and she just had no energy. The more she talked about it, the more frustrated I became (yeah.... this is about where my foot was firmly planted in my mouth....).

After we were done shopping, we dropped off Cindy. When it was just Kayleigh and I, I told her that I really thought she was falling into a habit of having something to complain about around Justin because that's where they left off before. Reminded her that part of her disease process is extreme fatigue, she'd have to learn to adjust to things like that, and really "just suck it up once in a while...". When she got out of the car, I knew she was upset. But, I drove away anyhow.

Sunday evening was the next time I really saw Kayleigh enough to see something was definitely NOT right! She was very winded and seemed kind of pale. She went downstairs to her room and I followed shortly after to check on her. She told me that going up and down the stairs was quite difficult and she had pain in the right side of her chest when she was breathing. Still, I wasn't OVERLY worried, but I was concerned enough to call a friend of ours who is a pulmonologist. He suggested taking her in to our family doctor first thing in the morning, unless it worsened.

Monday morning, before leaving for work, I stopped and checked in on Kayleigh. She told me it was becoming more difficult to breathe, but she was ok. I went on to work and Mike took her to the doctor at 10am. The doctor did a chest xray, but with stable vitals he told her that he thought maybe it was pleurisy. Gave her an inhaler and antibiotic and sent her on her way. No more than 30 minutes after Kayleigh sent me the message she was ok and going home, our family doctor called us with news that made me feel like the world's WORST parent! "Pediatric radiology called from Baptist, you and Michael need to get Kayleigh to the ED NOW, she has a collapsed right lung".

And I told her 2 days ago she was fine and to "suck it up!".

This starts our whirlwind week. Monday was very fast paced. Got to the ED where pediatric surgery was waiting on her and put in a chest tube to evacuate the air that was causing the collapsed lung. A CT scan later in the evening indicated it helped, but it didn't do the trick completely and they recommended surgery. Her chances of recurrence without the surgery went from 50% if the chest tube worked, now to 75%. She was made NPO and admitted, with surgery scheduled for the next day.

Tuesday, her surgeon and anesthesiologist took EVERY precaution to be certain Kayleigh didn't have any trouble with her dysautonomia during surgery. They "salt loaded" her to be sure her BP stayed up, they put her on an external pacer to keep her heart rate regular, AND they gave her an injection of epinephrine to up her baseline heartrate (which was a little low from the morphine). Off she went to the OR.

Surgery went exactly as planned. Kayleigh had little blistery type things called "blebs" on the top of her right lung. One of these blebs (the white one in the middle) popped creating a hole that let air get in the space between the pleura and the lung, thus pushing down and collapsing the lung. So, they just cut out the portion of the lung that had these blebs on it, stapled it closed, and she was done. Took about 3 hours in total and before we knew it the surgeon came out to the waiting room to tell us she did great and they were wheeling her into recovery. He said we'd get to see her in about 45 minutes and she'd go to an intermediate care room for the night, then back to the floor. No big deal.

Well... we ALL know Kayleigh does things her OWN way! 45 minutes turned into over an hour when we started wondering what on earth was going on. When a nurse finally came to get us, Kayleigh was being wheeled to the Pediatric Intensive Care Unit!!! They didn't say much, just not to be alarmed, but they thought Kayleigh needed a bit closer attention with all she had going on. They were kind of quiet about it.

After they got her all settled into the PICU we slowly learned more info. Turned out, as was VERY evident to us, Kayleigh did NOT want to wake up after anesthesia. She could nod her head yes and no and her eyes were "sort of" open. But she couldn't speak and she had no purposeful eye contact at all. She seemed so very distant and very far away. At the same time, she was beautiful. And her Daddy pointed out that watching her breathe in and out, and watching her pulse, was the most beautiful thing EVER!


While in the PICU I noticed a ventilator near her bed. Didn't really think twice about it, after all it's an ICU. Figured they were in all the rooms. The next morning (Wednesday) the nurse came in to get it and made a comment about being glad they didn't need it. I asked what she meant, she then said that in the recovery room, Kayleigh had difficulty breathing on her own after surgery, so they were told to have it available. I'm sure I went blank at that point because she reassured me that at no point did she even think she would need it!

Later that morning (still Wednesday) Kayleigh's surgeon (who is FAN-FLIPPIN-TASTIC!) came in and turned off the vacuum seal on her chest tube. He said they'd get an xray in a few hours, see how it looked, and maybe even pull her chest tube out so that she could go home Thursday evening. SWEET!!! Around 2:30 they came and did the xray in the PICU, then moved her to the adolescence floor. I asked about the xray and was told they'd read it and come see us on 9. No problem!

HA! Remember.... It's KAYLEIGH!!! Problem....

We weren't on 9 more than 30 minutes when the nurse came in and said the doctor was on his way up, but she had orders to put Kayleigh back on vacuum seal right away. Well crap! I was afraid this meant we were heading back to the PICU. Dr. P came in and explained that her lung was not staying inflated on it's own quite yet and showed an area that was still collapsed. He decided that for Kayleigh, vacuum for another 24 hours would be the plan, he'd try her off of it again on Thursday morning. Thankfully, Dr. P said she could stay on 9 as long as her vitals remained stable. She was "sort of" waking up a little (yep - 24 hours post op and we were still wanting to stay asleep!) and that was the primary reason she was in the PICU anyhow.

Thursday morning came and they did another xray ON the vacuum.... still a small leak so vacuum stays ANOTHER day!!! Thankfully, Thursday she was feeling better and we even let some visitors come. She was in and out of it most of the day, but she at least was able to visit during her "with it" times. Later in the afternoon during routine vitals they discovered Kayleigh was starting to fever. They jumped right on that and got her on antibiotics again because they suspected something was brewing.

Friday morning Dr. P came in right as radiology did. He read the first xray as she did it (vacuum still on) and he seemed more pleased with the lung itself, other than she now had fluid.... awesome.... pneumonia starting! Thankfully, the day before the nurses were on it and already had a resident start Kayleigh on antibiotics. Dr. P then turned off vacuum seal for another try and said he'd see us at 2:30 for another xray. If it looked good, he'd pull the tube out Saturday morning so we could hopefully come home on Sunday.

At 2:30 we ended up going downstairs to xray instead of them coming to us so they could get some better views. About 3:30, in walks doc who said "how'd ya like to get rid of that tube?". Kayleigh was THRILLED! Within 15 minutes the tube was gone!

Saturday morning Dr. P came in to see her. He was pretty pleased with her vitals and sent us to xray. Said if the xray was good - we could go home a day earlier than expected. Woo-hoooo!!!

But... again.... she is KAYLEIGH! Nothing goes as planned in Kayleigh's world!

Kayleigh got up to go to the bathroom and noticed she had a pocket of swelling on her lower back. No where CLOSE to where surgery was, but it was sizable! The area was comparable to a dessert plate just above the sacrum and was very fluid filled. The nurse paged the doctor who then ordered more xrays. A little while later one of the doctors came in and said her chest xray was clear, but she couldn't do the discharge quite yet because of this new development. Ugh!!! She looked at Kayleigh's area again and then went to radiology to talk to the radiologist. We anxiously waited for her to return.

Over an hour later the doctor came back and said the sweetest words..... "you can go home today!".

We are now home and she is resting comfortably on her very own couch.

She will see the surgeon in 2 weeks, and she also has to see someone for the swollen area on her lower back. But, she should recovery completely with very little chance of this happening ever again.

Praise God for our sweet angel!!!

Whew... Been a While!

According to the date on my last post... it's been over a month since I've updated! I'll do my best to catch everyone up on the last 6 weeks!

We had a Sunday afternoon free (rare for us!) so Mike and I took Chase and Paige to Pilot Mountain to climb and hike a bit. Paige gets braver and braver every time we go and Chase always tries to climb the tallest of rocks! Makes me nervous, but I love spending time with them like this! Always makes for great memories!!


November 2nd we celebrated our 20th wedding anniversary. Mike and I enjoyed an entire late afternoon and evening together. We topped off the night at Carrabas for a nice dinner. A disheveled lady walked in and sat alone at a table beside us and proceeded to pull out her knitting stuff. I tried hard not to chuckle and succeeded for a few minutes.... until the waitress asked her what she'd like to drink and the lady pulled out her own can of Diet Shasta soda!!! Mike and I were SURE that Candid Camera was closeby!!

We had Paige's 9th birthday party on Friday November 4th... a few days early! She invited a few of her best friends over for a night of manicures and movies - compliments of her big sister, Kayleigh! Paige was MORE than thrilled with her Password Journal from Mommy and Daddy, and the girls had a blast!!!


2 days later Paige had quite the accident! She was playing at one of her best friend's house and fell coming out of the tree house. Mike and I were at home when we got the phone call that they were taking her to the hospital because it appeared she had broken her jaw.... YIKES!! When we got there she was calmed down and doing ok. After 4 1/2 hours, a bunch of xrays, and big sister keeping her calm... the verdict was no fracture... but she definitely needed her chin glued up!


November 19th was a big day around our house... Kayleigh, Chase, and my best friend Jen's daughter Juli were all baptized at our church. Kayleigh and Chase were baptized as infants, but decided to do this on their own to acknowledge their commitment to Christ. So proud of all 3 of them!!!


Later the same day we decked our halls for the Holiday! Decorating our house is always a big family event with lots of laughs and memories shared decorating the many trees we put up!

Ever since my lifelong friend, Jenni, and her family moved here a few years ago, we've celebrated Thanksgiving with them. This year was extra special because Jim's parents, Bill and Sue, were here from Arizona to celebrate with us AND Kayleigh's boyfriend, Justin, flew in from the Air Force Academy for a few days. Coincidentally... this is the only picture I took of Thanksgiving Day!!


Yesterday afternoon was super fun. Very dear friends, Jay and Cindy Dietrich, are adopting a sweet little girl. Mike and I, with the Heinz family, are hosting an Adoption Celebration to help them prepare for Sarah Elizabeth to come home soon. Kayleigh, Paige, and I took Cindy to Target so she could do her gift registry. Paige had a blast "shooting" all the price tags and finding fun things for Sarah to have waiting for her! We are so very excited for Jay and Cindy and are thankful to be able to do this for them after ALL they did for us this summer when Kayleigh was sick!


Today it's just been Mike, Paige, and I. We ended up missing church, but have had a great day! Paige insisted on making Daddy a big breakfast (with a little help from Mommy of course!) and she was so excited that he enjoyed every bit of it! After breakfast, Paige even cleaned the entire breakfast mess!


After breakfast Paige helped me make Grandma Casto's famous Chocolate Pie! She enjoyed "cleaning up" what was left after the pie was poured into the shell.... but that IS the best part of making the pie.... right!?!


That's it... 6 weeks of Lyons life in one post! I'll try hard to not go another 6 weeks without an update!

Much love!