Monday, August 31, 2015

Jackson Stone is 8 years old.

My precious Jackson James Stone.

Today. You are 8. 8 years old!!!!!

How did that even happen???

You have had a wonderful year. You finished first grade at Westminster. You can read anything and everything. You are a whiz at math. You love science and experimenting on things we use in every day life. You just started second grade last week and I know this will be an even better year. You love school and always have.

You are such a good friend. You have such a wonderful group of diverse friendships from so many different activities in your life. I love watching you "hold court" over a group and keep everyone organized and ready for any game you all are playing. You have such a special and unique ability to bring people together to serve one purpose-all the while making sure each person feels just as special as the person next to them. My heart bursts watching you be a leader.

You love all sports, but specifically you love baseball, basketball and soccer. Your hand eye coordination has always been unreal and that came in handy this year when you started pitching machine baseball. You are an incredible batter and you can throw a baseball better than most kiddos your age. You can shoot a basketball from any spot on the court and you make about 99% of them-even at the 10 foot goals...which you started playing with this year.

You are still the baby whisperer. All of our friends with kids younger than you love having you around because their babies love you! You are so kind and gentle to them and you always show so much patience while caring for them. They all look up to "JJ" and I hope and pray that you will always remember all of the "little eyes" who are watching your every move. I know you will teach them all how to be kind and caring, a good teammate, and a good student.

You are the very best big brother in all of the land!!!! I have to pinch myself sometimes because of how much of a help you are all the time with Walker. He, of course, thinks you can do no wrong and I secretly love listening to him copy whatever it is you are saying or you are doing. I am so thankful for you my love and for always doing the right thing.

I want you to know that you are the joy to my life! You make me so proud every moment of every day and I love each stage of life I get to do with you. You make me smile and laugh and I love seeing your goofy side. I also love to watch you dance! You are incredible at dancing and I know you did not get that from me. :)

I love you to the moon and back and just like I say every night as I kiss you to bed, "I pray God's blessings on you always."
Love, Mommy.

Thursday, May 28, 2015

Fun with friends!

School is officially out for summer here! I officially have a 2nd grader (what the what!?) and a 3 day (er) at Westminster!

What do we do when summer time comes??? Spend time with our buddies of course!
We are so blessed with some really great friends. I love my friends and their kiddos so much!!!
These kiddos have literally grown up together....just like their mommas!
I also love watching my kiddos friendships bloom all on their own. Watching them navigate relationships and be kind to their friends makes me so happy.
And of course....I love spending time with my friends too! I am beyond lucky to have so many amazing women in my life!
And I love how my different friendships from different times of my life can come together and everyone becomes friends.

Monday, May 4, 2015

Almost five years gone.

No one ever thinks their child will die. No one ever thinks it will happen to them.

But it happens.

It happened to me.

It is still so hard to believe that baby we lost would be almost 6 years old. He would have grown. Would he be taller than Jackson? Would they be best friends? Would his hair be straight? Curly? Dark brown like his dad or light brown like mine? Would he be a wild man, always running? Or would he be quiet?

Every almost 6 year old I see is now Isaiah-I look at groups of kiddos and I see him in the middle of them. I think about my friends with 6 year olds and I wonder if they would all be buddies.

As we come up on the five year anniversary of the day Isaiah went to Heaven, I have been thinking constantly about the friends and family who were there for us during that horrific time. Those people who came over without being asked. Who sat in my living room and just sat there. Letting me talk when I wanted. Tell the story of that morning over and over. NOT tell the story of that morning over and over.

Letting me go lay down in my room and be alone when I wanted. And when I ventured out of my room, hours later, those same people were still sitting in my living room. I clung to these people more than they will ever know. And I am not sure I ever properly thanked them. Thank you for saving my life. Thank you for saving my family's life. Thank you for just being there for us. Simply. Thank you.

I think about how far I have come in five years in my grief journey. I am in no way healed...I will never be fully healed. But I am changed. Forever. I think this sums grief up so well. 

"The reality is, you will grieve forever. You will not "get over" the loss of a loved one; you will learn to live with it.

You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again, but you will never be the same again. Nor should you be the same, nor should you want to."

-Elizabeth Kubler-Ross

How easy it is to look away from grief, as if it might be contagious, or too frightening to face. 
But you must face it. 
Do not forget that. Look loss straight in the eye. Take anyone who is suffering a loss in your arms, and do not let them go. Stick together. Lean INTO eachother and not away from eachother.

Life now is so much different than I could have ever expected or hoped for. I laugh harder, I love deeper and I try not to take anything for granted. Isaiah taught me that, he taught us all that. He taught me that God is good all the time. My prayer for anyone suffering a loss is to remember how much our God loves us and to make each day the best day of your life.

Wednesday, April 22, 2015

Super Walker and Baseball Jackson

Walker has been really into Super Hero's the past few weeks and it makes me laugh. I found this cape that Aunt Ginny sent the boys two Christmas' ago and he has been wearing it nonstop. I guess it has replaced the ski goggles. :)

As most boys do, he loves to jump off of things and give me mini heart attacks all day. He loves to get on my bed (no judging that it is not made), and JUMP and yell "Super Walker!"

It's really pretty cute.
And then, moving on to my 13 year old....oh wait, I mean my 7 year old. (Can you believe how grown up he looks in this picture??????) He started pitching machine baseball a few weeks back and it is so much fun to watch him play!
He has been playing catcher and 3rd base....but I think he likes catcher the best.
This one is loving spending time at the ball field. He has discovered the yumminess of ball park nachos (yuck) and ring pops. This picture was taken right after he licked the fence. #notajoke
And I had to share this pic because no matter how old my kiddos get I always want to carry them to bed when they fall asleep somewhere else. I realize now that I may only have a few more months of carrying Jackson because he is ginormous but I will do it as long as I can!

Monday, April 6, 2015

Easter 2015

Easter 2015 is in the books!

We spent the weekend with family and friends...enjoying the weather and doing things all "eastery."

Here is Walker stretching before the egg hunt at our church Saturday.
These two just make me smile. Both boys were soooo into Easter this year.
Walker decided he also needed to do push ups before his hunt.
Our attempt at a family selfie.
The boys colored eggs....and totally loved it!
After church Sunday the boys, Renzi, my mother in law and our friends the Jacks had lunch together. Both boys wore ties and jackets! Score!
And what is Easter without wrestling in your Easter finest.

He is risen indeed!

Tuesday, March 24, 2015

Up in my grill

Do you ever feel like your kiddos are all "up in your grill" all the time. 24/7. 7 days a week.

Someone is always touching you. Wanting to sit in your lap. Hold your hand. "Hold You," as both of my kiddos have lovingly called it.

Sometimes it drives me batty. But most of the makes my heart swoon.
I cherish these moments when the boys want to hold my hand.

Or fall asleep in my lap at a restaurant.
Or sit on my lap because they think it's the most perfect spot to be.
I know someday there will come a time when they don't want to hold my hand, or have me hold them, or sit in my lap, or just be near them.
So I am going to remind myself each day, even when I am most annoyed because I just want to sit by myself for a while...that these moments are fleeting.

So, my boys...come sit on my lap...come hold my hand...I will hold you always. Even when you are bigger than I am.

My heart is yours!

Wednesday, March 11, 2015

Walker Stone is 3!

My dear, sweet, crazy, loud, fun, hummus eating Walker Stone.

You turned 3 years old on February 28, 2015.


We had an amazeballs birthday party for you the day before your birthday at Bouncin' Craze. Your most favorite place in all of the land. Just like last year a snowstorm rolled in threatening to cancel your party....but no way were we going to let a little snow spoil your fun!
We had some of your best buddies join you for a fun afternoon and evening of bouncing around in bouncy houses and having one of your favorite food groups. Cookie Cake. :)
Walker Stone you bring me so much joy! You would like it very much if I held you in my arms every second of every day. You are rarely not right at my side having to have at least some part of you hanging on to me at every second. My favorite thing that you say is, "Mommy, I want to hold you."
You are ridiculously handsome and you have absolutely no idea how cute you really are. You love to run and jump and if there is a puddle of water somewhere, chances are you will have found it and jumped as hard as you can in it splashing anything and everyone. Then getting mad at me because you are all wet. :)
You love love love love being around your friends. You are more cautious than Jackson is in social situations, but once someone is "in" with you, you are their best friend forever. Your love for your friends is so fun to watch.

You talk and you talk and you talk and you talk. Your dad and I are so amazed and impressed with how many thoughtful things that you say on a day to day basis. Just this morning you came into our room very early and you said, "Oh, hey mommy, hey daddy. I see that you are still sleeping. I will just tiptoe down the hall and make myself a snack. I'll be back later. Hope you have sweet dreams."
(Seriously, this is word for word what you said!)

By far, your favorite person in the whole world is your big brother Jackson. He can do no wrong and you are constantly trying to copy his every move. He is so kind and patient with you, and I honestly know he loves having you as his playmate, brother and friend as well!

When someone asks you what your full name is you say, "Walker Isaiah Stone." Even when we try to correct you and tell you that your name is actually, "Walker Seth Stone," you tell us that we are the ones who are wrong.

Your teachers love you so much! They think you are so smart and at your parent teacher conference a few weeks ago they told us that you can count on your own up to 17 without messing up, you know all of your colors, you can recognize your numbers, and you love to sing at the top of your lungs any song that they are singing. You love painting and coloring, and you have this affinity for play doh and bubbles. I am so proud of you and your love for school and for learning!

You are also one of the most stubborn people I have ever met in my life. You have the knack for asking the same question over and over and over again until you get the answer that you like. It's maddening sometimes but I have to think that this will serve you well in whatever career you choose one day. :)

But most of all, my precious Walker, I am so thankful to be your mommy. There is no place else I would rather be than with you, Jackson and your daddy...You boys just melt me and make my heart burst with pride every day. I love you forever and ever!

Thursday, February 5, 2015

Answers when you least expect it.

Renzi and I got a phone call on New Year's Eve from Dr. Norman, Isaiah's neurologist. This is not abnormal in that we keep in touch with her and see her at church (she and her husband teach Jackson's Sunday School class and have kids the same age), and she also serves on the Board of Directors for The Isaiah Stone Foundation.

She said she had some news and wanted to talk to us both at the same time.

Boy. Oh. Boy.

I was NOT prepared for what she told us.

This post from four years ago explains a little bit of background on our genetic test journey and the miracle of actually getting to have the test done (Dreams)

Basically, four years ago we had a genetic test done on a blood sample of Isaiah's that a lab in Iowa happened to still have even after he had passed away. We wanted to know if his epilepsy was genetic. We were talking about having another baby and we wanted to make sure that we could find out all we could about genetics to avoid epilepsy in our next child if possible.

Here is an excerpt of that post: "I asked if there was any possible way the lab would still have his blood sample. Dr. Norman said it was unlikely because it had been almost a year and most labs destroy any unused and used samples. She said she would make a call that afternoon to the lab in Iowa and just see.

And what do you know. They still had his blood. ALL of it.

So, we ran the test. This test would let us know whether or not Isaiah had a genetically inherited type of severe epilepsy. If it came back positive then that would mean he was a carrier of the gene and then Renzi or I could be tested to see which one of us was also a carrier of the gene. If it came back negative, then that would mean that his epilepsy was just a fluke and that somehow when he was growing in my womb that one tiny flap of his brain didn't grow right and there was nothing that caused it to happen that way.

Well, after about three weeks we got the results back.

The results were negative. This means that if Renzi and I decide to have more children someday it makes it very unlikely that he or she would be affected with epilepsy like Isaiah."

That all changed after the phone call we received on New Year's Eve.

Dr. Norman told us that she had been contacted via letter a few weeks prior about changes and improvements to the SCN1A genetic testing and that they were offering free of charge to "retest" anyone who had been tested in the past five years and they wanted to test Isaiah again.

Dr. Norman called the company who performed the test initially and explained to them that the patient they were requesting to test was deceased. The lab did some digging and lo and behold they had a few vials left of Isaiah's blood and they then offered to test it. FOR FREE.

Dr. Norman said this sort of thing just does not happen. Number one, no test is ever free when it comes to genetic testing. These tests can cost upwards of thousands of dollars.

Number two. It is not normal for labs to keep blood samples FOR FOUR AND A HALF YEARS.

The only thing Dr. Norman can think that this is a God thing.

She had the test run and got the results on New Years Eve. 

The test this time came back positive.

She told us that Isaiah did in fact have a genetic form of epilepsy called "Dravet Syndrome."
Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy. Initial seizures are most often prolonged events and in the second year of life other seizure types begin to emerge. Development remains on track initially, with plateaus and a progressive decline typically beginning in the second year of life. Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and have associated conditions, which also need to be properly treated and managed. These conditions include:

    • behavioral and developmental delays
    • movement and balance issues
    • orthopedic conditions
    • delayed language and speech issues
    • growth and nutrition issues
    • sleeping difficulties
    • chronic infections
    • sensory integration disorders
    • disruptions of the autonomic nervous system (which regulates things such as body temperature and sweating)

Children with Dravet syndrome do not outgrow this condition and it affects every aspect of their daily lives.

Unless a cure or better treatments for Dravet syndrome and related epilepsy's are found, individuals with these disorders face a diminished quality of life. Current treatment options are extremely limited and the prognosis for these children is poor. The constant care and supervision of an individual with such highly specialized needs is emotionally and financially draining on the family members who care for these individuals.

As you can imagine, it was quite a shock to find out why our son died after all of this time and what caused his epilepsy. We had shut that door a long time ago of ever really knowing, so you can imagine that I was a teensy tiny (ok, a WHOLE HECK OF A LOT) upset. My emotions were all over the place. So many questions.

But my number one question was this, "What does this mean for my two living children?" "Will Jackson and Walker have this disease as well?" "Will we have to endure this all over again?"

Dr. Norman was very quick to let us know that Dravet Syndrome arises "de novo," which means it arises spontaneously after the sperm and egg come together...which means that Renzi and I are not actual "carriers" of the gene. It just formed when Isaiah was conceived. Because of this, by far the most likely scenario is that Isaiah had a new mutation. At the time of conception, everyone has some DNA rearrangement-some pieces fall off, some pieces duplicate, some get rearranged. This is part of the normal and expected process. We have so much "extra" DNA that this typically happens in areas that don't really matter. It just serves as our genetic "fingerprint" but doesn't cause the disease. Occasionally, these rearrangements happen in very important regions, as in the SCN1A gene and it causes a significant disease, like Dravet Syndrome

Darvet Syndrome onset is always in the first year of life. This means that because Jackson is 7 and Walker is almost 3 we are in the clear.

One of the main things that I keep coming back to with this information is how important epilepsy research is. Think how much this genetic test changed in four years. The pace of genetic discovery in epilepsy is staggering, and repeat analysis is crucial if we want to get to a genetic diagnosis and ultimately move toward precision medicine for people with epilepsy.

Funding for epilepsy research is so critically important. First, it will help more and more families like ours finally get answers. New patients will get more immediate answers-answers that may potentially inform them about treatment, future family planning, risk for future generations, etc.

All of this information has made me even more proud of The Isaiah Stone Foundation.
Renzi and I started this foundation three years ago and this past year on what would have been Isaiah's 5th birthday (June, 15, 2014) it became an official 501c3.
We have an annual fundraising event each year and last year we raised over $100,000 for epilepsy research and for children and families in the state of Oklahoma who are dealing with this baffling disease.

We also host the Isaiah Stone Pediatric Epilepsy Lecture Series at OU Children's Hospital, where we bring in a leading pediatric neurologist to do ground rounds with the neuro residents and fellows at OU, give a speech and participate in a caregivers panel where families of children, siblings, etc. who suffer from epilepsy can come together and ask questions of the neurologists and meet other families who are going through some of the same things they are. The point of the caregivers panel is to help these caregivers not feel so isolated and alone in their epilepsy journey. To me, this is one of my favorite things we do with our foundation.

Our new website is up and 

I encourage you to please visit the site, look around, read, and pass on the message to others. There are numerous tabs throughout the site where you can donate, or if you would like to be a sponsor/donor for our next event, please just let us know on the contact tab on the website.

Given all of the craziness to get to this point I think what Dr. Norman said to me hits home the most. She said, "I always try to keep my eyes open for God's footprints in the world and truly that is the only way I can explain this series of events."

I've said this before over and over again over the years and I will say it again. Our God is a Sovereign God. He does not seek out to do harm to us. He chose to give Isaiah to us and he was with us when we had him and he was with us when we lost him. It's up to us what we do with situations we are given in life. How we handle them and choose to do so is our testament to God.

Our calling is to help others navigate this awful disease and we believe there will be a CURE.

Please consider donating to our foundation. Every dollar helps in beating this disease.

Monday, January 26, 2015

Big boy bed!

I am totally one of those people that when it comes to sleep I need like 10 hours a night. Knowing that is not really realistic when you have kids (ok, really EVER), but I always cherish my sleep. 

And when it comes to my kiddos sleeping...well, let's just say in our house I am the "sleep nazi." :)

I am not super duper strict but when it comes to bedtime routines and bedtimes...I don't mess around.

Walker has always been a pretty good sleeper, especially in the last two years and he loves his crib so I kind of just figured that he would go to college in his crib. Ok, not really, but he never complains and never crawls out. Actually, that's not true...when he was 18 months old he crawled out twice. The second time he must have hurt himself because he never crawled out again after that.

The last two weeks Walker has decided that he does not need to go to bed at night and has decided to yell and scream at us for upwards of 45 minutes each night after we put him down in his crib. 

One night when he was just wailing I walked in and took a mental evaluation of the crib situation and realized that he was just too darn tall for the crib...maybe he was just uncomfortable curled in weird positions just to be able to fit in his crib. 

So, two nights ago we decided to bite the bullet and switch him to a big boy bed.
And boy was he excited!!!! His bed is exactly like his idol's (Jackson) bed so he thinks that is pretty darn cool. And we let him pick out whatever sheets and blankets that he wanted. And he thought that was beyond everything.

We really talked up the importance of a big boy bed and staying in your bed and sleeping all night long. I was prepared for the night to be a bust and have him staring at me beside my bedside multiple times that night. And you know what??? The kiddo went down without a fuss AND he slept all night not getting up even one time.

The next day he took a two hour nap in his bed and slept all night again last night.

The only downside is....he has woken up each of the last two mornings at 5:45 a.m. for the day. EEK.

As we carried his crib out to our storage unit on the side of our house I got strangely emotional knowing that Walker is the very last of our kiddos to sleep in the crib. I thought about how far we have come in our parenting, in our marriage, our family and personally. What a blessing these three boys have been. And even though our family is complete, it still made me tear up.

And as we were rounding the corner and Walker came tearing down the hallway on his scooter and slammed smack dab into the side of the crib and made me smash my finger.....I got over the sadness. Just like that. :)

Friday, January 16, 2015


Earlier this week I had the chance to go on a retreat with my YPO Forum to Sedona, Arizona. It was a quick 48 hour trip but oh so good!
I am so thankful for this group of women and feel so blessed to know each of them. Our husbands are all a part of YPO (Young Presidents Organization) and are all a part of their own respective forums and we finally took the plunge and formed a forum of our own. I resisted the forum for a long time because I felt like I didn't have the time and felt like I have enough friends....but this, they sure are special.
We are all in various stages of motherhood, our marriages, our work and life so the perspective I receive from each person is incredible. We meet once a month and follow a meeting format and man do we get deep. It's so refreshing to be able to dive deeper into the kind of woman, mother, wife and friend you want to be. Our conversations are never short of awe inspiring.
YPO encourages forums to take a retreat once a year and so we embarked on our retreat to Sedona. We hiked, went to the spa, took a Pink Jeep tour, took a cooking class, ate great food and even went on a wine tour where our wine tour guide picked us up in a hearse! Seriously. A hearse!!!
We laughed, we cried, we talked for hours and hours and we just had the best time. Everytime I am with these women I come away feeling like I can do anything!
I believe it is so important to take the time to spend time with your girlfriends as much as you can. I know it is so hard to find the time to do this but I always come away feeling energized and smiling so much my face hurts.
I am so thankful for these strong, faithful women in my life. (And Sedona was amazing as well! If you haven't been...go!)

Wednesday, January 7, 2015

Walker's Most Epic Moment To Date.

Oh Walker Stone. 

This child is forever making me pull my hair out and melt me all at the same time. 


Today may have been his most epic moment to date.

I needed to get in the shower for work. 

So I gave him Renzi's Ipad to play on while I showered. Easy enough, right? I have done this countless times before. It's my go to so that I can actually get something done, like general hygiene.

I get in the shower. Shower. Get out of the shower.

And as I am putting my makeup on he came running into the bathroom so excited to show me the video he took. OF ME IN THE SHOWER.

I did not notice he had taken the video because in the video I have my eyes closed because I was washing my face. Heaven forbid I have to keep my eyes open while I am washing my face. But apparently that is what I must start doing.

I quickly erased the video and thought to myself. Dang. I thought I looked better naked. Thank goodness no one else saw that video.

Or did they.

Forty five minutes later I put Walker in the car, backed out of the driveway and decided to check my email really fast before we take off down the road.

And lo and behold.

There was an email in my inbox from Renzi. With no Subject.

And a video attachment.

Yup. Walker had somehow emailed the video of me in the shower to me.

HOLY CRAP DID HE SEND THIS TO ANYONE ELSE? WHAT IF HE SENT IT TO ALL OF RENZI'S CONTACTS? OMG MY LIFE IS OVER. WHY DIDN'T I SUCK IN? DO I REALLY LOOK LIKE THAT? I MISSED A SPOT ON MY FACE. OMG. MY LIFE IS OVER. (Just some of the thoughts that ran through my mind in the 2.5 seconds it took me to process what had just happened.)

I bolted out of the car and back into the house to grab Renzi's Ipad to see if Walker had sent it out to anyone else.

And thank GOD...he had NOT.

But if he had!!! OMG times infinity.

Looks like we will be finding a new activity for Walker to do while I shower.