KCNQ2 Awareness – Meet Nolan – New Jersey
(Nolan is truly a super hero in my book. His mother messaged me and gave me permission to use his story that was posted to the KCNQ2 Cure Alliance page. You can check it out too for more stories like these and fundraisers used for research. Please say a special prayer for Nolan. These newborn days in and out of the hospital are some of the hardest.)
Nolan was born early on the morning of February 03, 2018. He was born blue and was having difficulty breathing. After the doctor and nurses stabilized him, he was rushed to our hospital’s Neonatal Intensive Care Unit (NICU). Within his first few hours of life, Nolan began having seizures. As the day progressed and the seizures did not subside, it became clear that Nolan had to be transferred to a hospital better equipped to handle his issues. He ended up being transported two hours away to A.I. duPont Hospital for Children| Nemours
Nolan’s seizures were constant and impossible to control. The doctors tried many different medications, with little success. They were left with no alternative but to induce a coma state. Nolan’s doctors ordered urgent genetic testing. We received Nolan’s diagnosis on February 20th, just 17 days after he was born. Nolan had #KCNQ2 Epileptic Encephalopathy. Now armed with a diagnosis, this allowed us to have a focused treatment plan.
We began sodium channel blockers and put Nolan on a #ketogenic diet to help control his seizures. We were able to minimize them, but his EEG remained problematic. In addition to his seizures, Nolan had difficultly maintaining his airway and had acute respiratory failure, which required a breathing tube; he had double PICC lines and an artery line placed; he was diagnosed with diabetes insipidus; he had severe low blood pressure and required medication to keep him stable; he was diagnosed with Micrognathia; he has Oropharyngeal Dysphagia, difficulty eating and is an aspirator, which necessitated gastrostomy tube surgery; and he had severe bilateral hip dislocation that was corrected with double hip surgery.
After three and a half long months in the NICU, we were finally able to take Nolan home on May 10, 2018.
Unfortunately, subsequent to his return home, Nolan’s condition further declined. In addition to the aforementioned afflictions, Nolan’s battles continue to mount. Along with his extremely rare genetic disorder of KCNQ2 Epileptic Encephalopathy, Nolan is now diagnosed with Intractable #LennoxGastautSyndrome with Status Epilepticus. He is experiencing Severe Iron Deficiency Anemia Caused by Chronic Blood Loss from his GI system of an unknown source, and he has Protein-Losing Enteropathy, Hypogammaglobulinemia, and Hypoalbuminemia. In July his hemoglobin dropped to a low of 2.3. Since then we have been working with a team of gastroenterologists and hematologists to ensure Nolan’s hemoglobin never drops to that dangerous a level again.
Nolan has been diagnosed with Cortical Visual Impairment and may never be able to see properly. He has severe Delayed Childhood Development. He is gastrostomy tube dependent. He has low growth hormone, low muscle tone, ataxia, and struggles to do basic, natural things such as adequately grow (Nolan is in the less than one percent for both weight and height) or hold up his own head. He has severe GERD, Gastrointestinal Dysmotility, and Functional Digestive Disorder. Nolan currently has atelectasis in two spots, a partially collapsed lung from numerous viruses, an unfortunate element of Nolan’s life that may become a regular occurrence. Nolan suffers from Tachypnea and Chronic Lung Disease, which requires him to receive daily Chest Physical Therapy and inhaler and nebulizer treatments. He has developed an inguinal hernia, which necessitates surgical intervention.
Nolan requires the care of pediatric neurologists, endocrinologists, a neuro-ophthalmologist, hematologists, gastroenterologists, pulmonologists, an orthopedist, physical therapists, chiropractor, occupational therapists, speech/feeding therapists, nutritionists, a Diagnostic Team, and Physical Medicine and Rehabilitation Doctor. He receives daily therapy and weekly trips to the hospital.
Through it all, Nolan continues to show uncommon strength and fight. He frequently surprises his doctors with his perseverance. He is as sweet as he is strong, and loves to be cuddled, listen to soothing music, and interact with his older brother. He has not intentionally smiled yet but he knows how to express himself through different cries and noises. He has missed some milestones, not independently rolling or crawling, but he works hard in therapy and we will never quit on him. We look forward to a future that promises newly developed medicine to help Nolan and all his KCNQ2 friends.
This year has been the most difficult of our lives, and we could not imagine going through it alone. Our family, friends, colleagues, local community, and the KCNQ2 support network are truly invaluable sources of support. The KCNQ2 parent group has helped guide us through the many needs and cares of our son. We belong to a new community that we didn’t even know existed before February 03, 2018, that now we couldn’t imagine living without.
#KCNQ2 #kcnq2STRONG #kcnq2CURE #CUREkcnq2 #KCNQ2AwarenessWeek
It is KCNQ2 awareness week. If you missed my last post introducing Afton, be sure to check it out!
When you are dealing with a rare disease like this, you end up connecting with people from all over the world.
Today I want to introduce one of our little warrior friends from Brisbane, Australia! Meet Lucas.
(Isn’t he so handsome!!💜)
The following is his short but courageous fight with KCNQ2 written my his loving mom.
This is Lucas. Born in December 2018.
He started having seizures at 24 hours old and was transferred to PICU at Queensland Children’s Hospital after an EEG showed multiple seizures and background encephalopathy.
At 9 days old he was diagnosed with KCNQ2 encephalopathy due to a de novo gene mutation.
(De novo means it wasn’t inherited from a parent but the gene was changed or mutated on its own during formation.)
He had his last seizure at 4 weeks old and was discharged from hospital at 6 weeks.
He has started smiling and cooing but is already showing some motor delays. He is on 3 anti seizure medications.
We don’t know what the future holds for him, which is terrifying but all we can do is love him, go to therapies and hope for the best.
Why do I want you and others to know about KCNQ2?
KCNQ2 typically presents with seizures during the first week of life.
You need to know about KCNQ2 because if someone you know has a newborn that begins having seizures, they need to know that genetic testing for KCNQ2 should be done.
It could be the difference between life and death for a child to receive the immediate and proper treatment.
(The above photo was found on the KCNQ2Cure Facebook page. Check out their page for more information as well as fundraisers you can participate in.)
March 1st begins KCNQ2 awareness week. For any new readers, my youngest daughter Afton has KCNQ2. This is a genetic abnormality – for her, part of her gene is deleted.(Above: Afton at the children’s hospital & less that two weeks old.)
I decided not to tell her story today because a lot of you have heard it. If you have questions about her history, feel free to leave comments or questions at the end.
Today I want to do a brief introduction of her and what our life is like with KCNQ2.
Before we start, I want to explain to you that most KCNQ2 children have some degree of developmental impairment involving one or more of the following domains: motor, social, language, and cognition.(This is Afton on her way to her first day of the PIP program. It is a local program designed to help kids with delays prepare for Kindergarten.)
Afton is delayed in all of the above, but she is mildly affected compared to so many kids.
Afton is 3 1/2 years old.
How did you know something was wrong?
Afton had her first seizure at two days old and five hours after we were released from the hospital. She was diagnosed with KCNQ2 when she was 6 months old.
How did you react to the diagnosis?
A nurse called me from our neurologist’s office. She explained that Afton had a genetic mutation called KCNQ2. She didn’t know much about it, but the dr mentioned something about it being benign. She said I could google it, and if I wanted the dr to call me to talk further she would.
That’s how most people respond when I tell them that.
But here is the truth: we have lived in two states since Afton was born.
In Mississippi, Afton had a very seasoned pediatrician. I had a very seasoned OB. She was at our local ER with three different drs on three different occasions. She was in the ER at the children’s hospital multiple times & admitted multiple times. During those times I don’t know that we ever had the same general dr or nurse.
She saw the neurologist team there and had two different pediatric neurologists while in Mississippi.
In Georgia, her pediatrician is part of a large practice. We have been through the ER twice here and admitted twice. Her neurologist here is the only pediatric neurologist in our immediate area (so she has a lot of patients.)
In all those visits and all those drs and all those nurses, I have never met one that has ever even heard of KCNQ2.(Currently they have confirmed 700 cases of KCNQ2 in the world. The more people know about KCNQ2, the more people will test for it and they expect that number to increase.)
What does Afton like to do?
She loves music. As a matter of fact, a lot of KCNQ2 kids love music.
She has always had a love for books too!
She is a fan of Shimmer & Shine, Mickey Mouse Clubhouse, Dora the Explorer, Peppa Pig…all the usuals.
She loves being outside and especially jumping on the trampoline.
She likes to take a bath too and go to the swimming pool even though she can’t swim yet.
What is the hardest thing about her diagnosis?
Every day is different, so I’m sure the answer would change from day to day.
But most often I think the hardest part is that KCNQ2 robs me of some simple joys I expected to have with her.
For example on Sunday mornings when service is over and I go to pick her up from the nursery, I see toddlers running up to their moms. They yell “mommy!” They smile and give them a big hug.
The other day my sister was asking her son if he wanted a frozen pizza. His little sister who is just a little younger than Afton responded that she wanted a Frozen pizza – with Elsa and Ana and Olaf!
Those things I hate we’re missing out on.
What are your biggest fears for her?
But I don’t let that in.
It would drive me nuts.
I have never dealt with real fear or anxiety before, but when Afton was a baby I realized I was becoming crippled by fear.
I had found her once having a seizure early in the morning in her crib. It was much more violent than the ones before, and I didn’t know how I could ever sleep again.
I didn’t want to go anywhere or do anything after that. I would sit and watch her nap.
But I had Alexa too, and I realized very quickly that I wasn’t going to be any good to anyone like this.
I remember walking into Afton’s room and speaking out loud declaring she was a child of God. He had complete control over the situation and not me. I was going to trust Him and not live in fear.
Of course there were moments, but that was a turning point for me. It was freeing! So from then on I began to live a day at a time.
I couldn’t change the past and I would only plan for the near future when it came to her. I don’t let my mind wander more than a year or two down the road because worry sets in. Also a lot can happen before that time comes.
My greatest fear now though is that she continues to grow into this beautiful young lady, but her mind and abilities don’t.
I hear all the time that “she’s beautiful!” “You wouldn’t know anything was wrong.”
And while that is kind, you can imagine how dangerous that could be as well. But like I said, I don’t go there.
What are your hopes and dreams for her?
I pray multiple times a day that God will offer her complete healing! Complete – like I want him to heal her gene. That might sound crazy, but I figure if he can raise Lazarus from the dead and give Sarah a baby in her 90s, he can heal Afton.
I don’t know what God’s plan is for her and I pray that God will give me a heart to accept whatever that is. I also know that he knows the desires of my heart, so I figure why not pray for those things as well.
I want her to grow up and get married and have kids without the worry of passing on KCNQ2.
I want her to be a warrior for Christ.
I want her to be an example of how powerful God is.
I believe she can bring others to Christ even if his plan for her is not to be healed.
I just want her to enjoy life….to be happy and feel loved. 💜
I hope and believe we are doing a good job at that already.
For more information on KCNQ2 and how you can help support research go to http://www.kcnq2cure.org.
The funny thing for me about Valentine’s Day is that we take this one day out of the year to buy all the roses, huge stuffed animals (that you seriously can’t put anywhere), heart-shaped balloons, jewelry, chocolate, etc.(My bridal bouquet circa 2008.)
But the world will attempt to show you how easily you can fall out of love. “Love isn’t forever. It can change. You can grow apart,” the world will tell you.
Why celebrate something so wishy washy?
(If you believe that it is…which I don’t!)
Think about it.
What things are temporary in your life that you cherish or take great care of?
Ever notice how often kids treat a substitute teacher poorly?
What about your rental car?
How much care do you put into an apartment or rental house?
So I ask you: If we are going to use this day to celebrate love, shouldn’t it be a love with consistency?
My husband and girls have taught me so much about love and given me a glimpse into the kind of love God has for us.(Afton’s 2nd Birthday)
My oldest, Alexa, was love at first sight. Honestly, other than a rigid sleep schedule, she was so easy.(Alexa, 3 months old)
As she grew, she was so prissy. She hated to have her hands dirty and would sit with her legs crossed all the time. She would say cute things like calling shoes “sues” and flip flops “flop flops.”(Alexa, 6 months old)
As she has gotten older, you have the usual disciplinary issues, but over all she is a good kid.(December 2010, Me and Alexa)
She makes great grades.(Summer 2011)
She is well rounded – loving sports and outdoor activities as well as reading.(Alexa’s 3rd Birthday)
Even now as we prepare for the teenage years and the whining and everything is “unfair” begins, there are still so many things that make her easy to love.(Alexa, age 4)
She is very honest.(Alexa, age 6)
She is funny and smart and she says she is glad to have us as her parents. She hugs and kisses us every night. She tells us she loves us and how great we are.(Easter 2016)
Like I said…easy to love.(Fall 2017, photo by Megan Myrick Photography)
My youngest, sweet Afton….we loved her at first sight. She was a gorgeous baby.(Aug.17, 2015)
Of course, as early as day two she was proving to be more challenging.(For any new readers: my youngest was born with KCNQ2 causing seizures at two days old.)
And once we were home, there were days I couldn’t sleep. Weeks maybe.
I’m not sure…have I slept since she was born?
I say I have “mom hearing.” If she is talking in her bed, I can sleep through it. If a seizure begins, I am up in a second.(Sleeping Beauty, Halloween 2015)
Can you consider that really sleeping though? Probably not.(3 months old and back at Children’s Hospital.)
Afton never calls me mommy.
She will come and crawl up in my lap, but it is always for her comfort.
She never has said she loves me (even though I know she does.)(Afton, 5 months old)
Sometimes when I go to kiss her, she pushes me away.
Just before Christmas she swatted at me and knocked a cup of hot chocolate out of my hand. The drink burned my hand. It took almost a month for the marks to fade. She never knew what she did so she never felt remorse for it. No tearful I’m sorries.(Afton’s first birthday!)
She never says thank you.
Sometimes she doesn’t want Alexa near her, and it makes Alexa feel rejected. She never gives up on Afton, and that hurts my heart even more.(Photography by Laurie Stewart Photography)
And you know what?
She is easy to love. (Afton, 1 year. Photography by Chlee)
We adore her! We love her just as much as we love Alexa.
There is not a day – not an hour – not a second that I question my love for her.(Spring 2017, Meridian, MS)
There is not ever a time that I consider giving up on her.
There is not ever a time that I consider giving up the fight for her healing.(4th of July, 2017)
There is not a day that goes by that I don’t pray for her.
I don’t want to leave you thinking there is no joy with Afton.
There is so much joy!(Fall 2017, Tybee Island, GA)
She likes to be tickled and have books read to her. She loves music and sings songs. She loves being outdoors (especially on the trampoline!)(Feb. 2017, Richmond Hill, GA)
We truly enjoy her. As hard as some things are, we have a lot of fun with her!! I recently read from another mom “the deeper the sorrow the greater the joy.”(March 2017, Savannah, GA)
One day I was buckling Afton into her car seat. She looked so cute, and I leaned in to say I love you and give her a kiss.(June 2018, back in the hospital with seizures after 2 1/2 years seizure free.)
When I did, she screamed and shoved my face away.
This isn’t the first or only time this has happened. Some days I just go on like nothing happened.(4th of July 2018, Brunswick, GA)
But this day it hurt my heart.
I started to cry.
Then I had this thought.
What does God feel like when we turn from Him?
When we push Him away?
When we scream at Him?
When we refuse Him?
When we never say thank you?
When we don’t say I love you?
What about those who deny Him as a father?
How does he feel when we don’t love his other children?
You know…other people in the world. All of them. Every person is His child. Good, bad, ugly – whether they acknowledge Him or not…they are still His.(Easter 2017, Meridian, MS)
And the Bible says He still loves us.
And I believe it!
In a small way, I understand it after loving Afton.(First meeting with Afton)
But it is a small way…far removed…because God sent his son to die for you and me.
And as much as I love Afton, I can’t imagine sacrificing Alexa for her.(Fall 2017 Photography by Megan Myrick Photography)
And when I try to understand that kind of love in my small human brain, it is incomprehensible to me.
Then there is my marriage.
I remember attending a premarital counseling session and our pastor at the time said “one day you will not be the attractive, young couple I have sitting before me.”(pre-marriage…I’m guessing we were 24 & 29)
I remember thinking, I know! One day we will be old.(Spring 2008)
But he knew that life changes you inside and out and we wouldn’t be the same at the end as we were at the start.
When I think about the years that Chad and I have been together, I think about the sweet cards he gives.
I think about how he will do the dishes after dinner.
I see him sleeping on a piece of foam on the hospital floor because he said we should be there together for our daughter. He says we are a team.(Aug. 2015 in the NICU with Afton.)
I think of laughter, trust, consistency, and sacrifice.(My favorite picture of these two. ❤️)
It’s not glamorous, but it’s true.(Chad and Afton, Sept. 3015)
It’s not perfect, but we never give up.
Love is shown by what you do for people And how you treat them.(Aug. 17, 2015)
If you say you love people but don’t serve them, do they feel loved?
If they don’t feel loved, does it matter that we say we love them?
You’re probably familiar with 1Cor. 13:4-8. It begins “Love is patient. Love is kind.”
I want to use it to give you a Valentine’s Day challenge.(Valentine’s Day, 2017)
From now through Feb. 14th, I challenge you to apply this verse to as many people as you can.
The Bible says this is the standard for love and calls us to love each other.
So let’s look at what this verse really calls us to do.
Be patient with each other.
Don’t be jealous of one another.
Don’t be prideful.
Don’t be rude.
Don’t be selfish.
Don’t keep score with each other.
Love doesn’t delight in evil but rejoices in the truth of Jesus Christ.
It always protects, always trusts, always hopes, always perseveres.
You will notice that it calls us to love people in a way that is completely unselfish.(Sweet friends at Bitty & Beau’s – a coffee shop that employees people with developmental delays.)
I would love to see us challenge each other to take this holiday to truly love others and see what happens.
Make this your own! Maybe you show love to someone in your life that is hard to love.
Maybe this means you show love to a stranger, or someone less fortunate.
You could just send a sweet card to a friend and let them know they are loved.(Afton’s Sweet friend. He never gives up on her either. 💜)
Maybe this means you simply don’t lose your temper driving to work.
Whatever this looks like for you, I encourage you to share your experiences and challenge others to do the same. #truelovechallenge2019
Hopefully, it will spark us to show love all throughout year.
Let me wrap it up by saying if you are feeling like a black Valentine’s Day is in order for whatever reason, please don’t forget that you are loved by the one who is the best at love. #jesus
He gave everything for you. #heavenlyfather
He loves you in a way that is wreckless and impossible to understand. #savior
And He is waiting for you to accept Him every day of the year – not only on Feb. 14th. #creator
“And now these three remain: Faith, Hope, and love. But the greatest of these is love.” 1Corinthians 13:13
How was your December? (photo by Simply Beauty Photography)
I can’t believe I went all month without a post. It is my favorite time of the year. I always try to pack it all in while attempting to savor every moment so it doesn’t pass too quickly. (photo by Simply Beauty Photography)
However, I had something happen two years ago that began changing my perspective on Christmas. (photo by Simply Beauty Photography)
I actually wrote a blog post for you about it, but to be honest it was a little too raw to edit and actually finish. (photo by Simply Beauty Photography)
Every Christmas since 2015, I feel God speaking to me in a way that builds upon that new perspective. (photo by Simply Beauty Photography) Pajamas are from Sweet Honey.
This year was no different. (photo by Simply Beauty Photography)
So I decided that He isn’t done molding my Christmas spirit, and it’s not the time to share. Maybe next year. ❤️(photo by Simply Beauty Photography)
I do want to share with you all my Christmas decorations and some of the fun things we did!! (photo by Simply Beauty Photography)
It was fun to have a space of our own again. (photo by Simply Beauty Photography)
I look forward to adding to and improving what we did this season year after year in our new home. 🤞🏻 (Knock on wood that we aren’t moving anytime soon!)(photo by Simply Beauty Photography) Dresses are from Hannah Kate Clothing.
If there is anything you have questions about or want to see in more detail, leave me a comment or question! I hope you enjoy. So…here we go!
Every year our elves arrive on Dec. 1st with a welcome breakfast! I know a lot of people loathe this new Christmas tradition, but I think it’s fun! (Elf version of a hot air balloon!)(I decorate the table with ribbon packages, Christmas decor, really anything in the house.)
This year, we had two elves. Lizzie belongs to Alexa and Snowflake is Afton’s. (Sleepover Party!)
They rarely get into mischief or make a mess. Sometimes they are hanging from light fixtures. (Or taking a nice drive.)
Sometimes they are more creative.
We always purchase a real tree for the house. I love Christmas ornaments and all are welcome on my tree! I have handmade ornaments from the kids as well as sentimental ones. This is one of my favorites!
(I have one for each of the girls!)
We placed wreaths on all the windows hung by ribbon. Well, they appear to be hung by ribbon.
The wind off the east coast wasn’t kind to them. We ended up attaching them to window hooks to secure them, and the ribbon was just for looks or support when the wind kicked them off the hook. (I made this wreath this year! I love the simplicity of it vs all the glittery ornaments that were on my old one.)
That only happened on one particularly stormy and windy day. Next year, I want to add lights somewhere outside. I think we were the only house on our street without them!
Speaking of lights, it’s one of my favorite things about Christmas! We visited a botanical garden in our area that always goes all out for Christmas. Several local businesses do a great job with lights and it makes driving through the heart of town so beautiful! Even our local park wrapped the old oak trees in lights, and as I mentioned before our neighborhood impressed this year! (Savannah Mall’s Christmas set up!)
We saw Santa too which is always a HUGE hit! 😂
We went caroling with some friends from church. This was our first year participating and it was a lot of fun!! You could tell the neighbors really enjoyed it also. I hope this will be a new tradition for our family. Alexa had her class party at school, and we made some sweet treats for our teachers! We usually make a gingerbread house, but this year I found this cute gingerbread village. The small houses were easier to construct (in my opinion), and I liked that we each had our own house to work on.
Can we talk about how much I love Christmas outfits? 😍
It’s crazy how much I love them! 😂 I had so many outfits from when Alexa was little in addition to things I had bought for Afton AND outfits from last year that still fit, we couldn’t even get them all worn.
My living room Christmas decor is very traditional in color, and I love it, but I have always wanted a room that reflected a white Christmas theme. I attempted to begin that in the kitchen this year. Somehow I dropped the ball on photographing the kitchen as a whole, but you can see I hung wreaths inside the windows on white ribbon.
I wanted flocked wreaths, but found green ones on sale at Hobby Lobby. I decided to spray them with artificial snow spray. It actually worked better than I anticipated and was a nice option to keep the budget down.
I added this garland on the light fixture later and loved it. But it made me think maybe I should go for green wreaths next year and just add some white sprigs. We’ll see!
I found these flocked magnolia wreaths in the dollar section at Target along with the placemats for the kids! How awesome is that section at Target? Seriously, I find the best stuff.
Alexa has had this pink tree for years. I bought it online from Treetopia. We started with a handful of ornaments, and every year we add a little more to it. Ignore the shadows toward her bed. Apparently, we ran out of light bulbs and I didn’t realize it at the time of this picture! 🤦🏼♀️ (photo by Simply Beauty Photography)
The tree has candy garland and tons of ornaments that resemble ice cream, slices of pie, gingerbread, and other sweet treats! Afton doesn’t have a tree yet, but I plan on working on that for next year. My girls love window clings too! We found ours this year at Walmart. You can see here on the door in the kitchen we put this snowy scene of Santa flying over a little town.
I’m attempting to save it for next year even though most clings are a one and done deal.
The girls had snowflakes on their windows in their bedrooms we bought there too!
We finished off our season as we always do with a candle light service on Christmas Eve. This is a “come as you are” event, but it is our family tradition that the girls wear their best Christmas dresses and it makes it extra special for us. I have mentioned before that Afton’s 3rd Birthday was very hard for me – for so many reasons. But it prepared me for Christmas this year. She doesn’t get excited about new toys or opening gifts.
The thought of Alexa opening box after box for her while we attempted to rope her in and get some excitement out of her just crushed my spirit.
Then it occurred to me…why do that to myself?Or to her!
We bought her a playhouse.
Nothing to open.
It was perfect.
We painted it like a house I had seen on Pinterest, and it was beautiful!!
You can see her playing inside it. It amazes me that she just KNOWS when something is meant for her.
I decorated it for Christmas, and we added the number 15 to the door to match our house number.
It has a little play kitchen sink and stove inside and a working doorbell!
I even asked our family to do the same. My mom and sisters went in together and got her this rollercoaster.
It has been a huge hit for every kid that has been over since Christmas! Ha!!
Even my mother-in-law & sister-in-law got in on the unique gift giving and sent her a book, therapy items, a music toy, & pajamas (just to name a few)….things she could really use.
It was perfect and a good lesson learned.
Expectations can be crushing.
Sometimes it is important to accept the way things are (for now), and make that time extra special instead of trying to make it into something it isn’t.
That’s exactly what we did for Christmas dinner too!!
You are looking at our Christmas dinner!🔝
We have never missed Christmas dinner with our family until this year, so we decided to make it our own.
Grinch night was the theme!!
All our food was green and we even made green punch. It was actually delicious.
Then we all watched How the Grinch Stole Christmas.
To wrap it up, December was great.
We dealt with some sickness and we threw expectation out the window.
Most importantly, we celebrated Jesus.
As always, I hope you leave this page feeling inspired and encouraged.
Thanks for following along on our journey!
Happy New Year everyone!!
The fact that it is 2019 blows my mind. How about you?
I’m sure someone out there thought by 2020 we would all be in flying cars like the Jetsons.
My graduating class has started talks of our 20th high school reunion this year.😳
I just refuse to believe I am that old.
Anyway, I wanted to share what is on my heart for this new year and some funny pics of our New Year’s Eve. For some reason every year Alexa and I go nuts with Snapchat filters. Tradition, I guess! Ha!!
Also, I have a Christmas recap that will be out to you soon. We had a great December, and I also give you guys a little background into why you haven’t heard from us on the blog all December.
If you follow us on social media, hopefully you enjoyed our elves and all the fun Christmas activities we participated in.
Ok…about the new year.
Our sermon on Sunday was on Isaiah’s vision. Basically, he has a vision of God sitting on a throne in a temple.
There are angels declaring God Holy, Holy, Holy and Isaiah is able to see just how sinful he is while in the presence of the Lord. However, his guilt is removed and his sin is atoned for.
The Lord asks “Who will go for us?” Isaiah replies that he will go.(After all the Christmas ornaments were off the tree, I left the lights for a day or two to enjoy at the beginning of the new year. I think this will be a new tradition.)
The question that was proposed to us was what has God asked you to go and do?
If you are a Christian, your sin is forgiven and you are filled with the Holy Spirit.
We are all asked to go and share the good news which is that Jesus loves you so much that he died on the cross for your sin so that you can live in Heaven with Him.
Our pastor said everyone is asked to go.
We aren’t asked to go to church, we are asked to go into the world.
We aren’t asked to serve only each other but the world.
It made me think about what is my mission here?
What plan does God have for me?
At a time when we are making resolutions and goals, I thought what if we all began to pray for God to reveal his mission for us?
What if in those resolutions I committed to volunteer in my community?
What if I spent my time planning how I could spread more good news?
I watched a video once by Tim Tebow where he said that people always say to him that they don’t know what God wants them to do.
He said he didn’t know what God wanted you to do either (ha!) but to just get out there and do something. Do something that helps others and he felt sure God would lead you in the right direction. (I’m paraphrasing…but that’s what I got out of it.)
I think this is good advise!
Get out there and do something and pray God will lead us in the right direction.
Let’s face it…I have decided God isn’t going to come to me in a dream or a burning bush or words spoken aloud for my ears to hear.
Even though that would be awesome!
I have to put in some effort.
Get out there and do some good.
Really pray for God to guide my path and that He would move through me.(I needed a lot of coffee New Year’s Day! 😴)
He asks us to be the hands and feet of Him.
If you think about it that way, what have His hands and feet been doing lately?😏(We started 2019 off with very warm weather! So outside we went.)
So…that’s the plan.…to do something!
The hubs and I have talked budget, diet, and exercise, and I plan to keep those because they are important. But I’m excited to see what God has in store for 2019.
(Gorgeous sunset provided by your Heavenly Father. ❤️)
Happy 2019, friends! 🥳
I can’t believe it is Thanksgiving week! Seriously…it’s shocking to me.
I got my Halloween decor down as fast as I could so that I could enjoy some Thanksgiving/non-scary fall things before the craziness of Christmas begins.
I absolutely LOVE everything about Christmas, but I hate that Thanksgiving seems to be skipped.
Don’t you think that it is so perfect that we have a holiday solely about being Thankful before we celebrate the most amazing gift the world has ever been given – the birth of the savior?
If we skip the thankfulness, can we fully appreciate all the love that giving brings during Christmas?
Anyway, we’ll chat more about that during December. I just wanted to mention why I want to celebrate Thanksgiving fully.
I asked for some traditions that others are doing for Thanksgiving.
I have noticed several people are having Friendsgiving. This is the best!
Friends are so important in our lives. Chosen family, I prefer.
Our church hosted a Friendsgiving through our women’s ministry. We all brought a dish and there were prizes and fun games! We even played Friendly Feud which was a crowd favorite.
The woman’s outreach at this church is the main reason we began attending. In my experience, it is the women who volunteer for the children’s classes or nursery on Sunday.
If your kid is sick you stay home.
If the baby is crying, you are the one sitting in the hall with them.
I think it is wonderful that they try to etch out this time for the women of the church to come together, get to know each other, and fellowship.
They have had testify nights where women of all ages and backgrounds from within the church have spoken about their walk with Christ too. It has been some of the most special times for me there.
Another activity a friend of mine mentioned is that every night they are writing on a pumpkin what they are thankful for. By Thanksgiving it will be covered in thankfulness! Sweet idea.
I have mentioned before on my social media account that in the past I have kept a blessings jar. For an entire year I would write little blessings on pieces of paper and stick them in the jar.
At the end of the year, it was wonderful to so easily read those pieces and see so many things God had done for us over the year.
So for the last week, I have encouraged Chad and Alexa to do the same. On Thanksgiving Day we are going to read over them during our long drive to Alabama.
Tonight we are going for dinner at the Taylor’s house for a little pre-Thanksgiving celebration. Jodi was my first friend in Richmond Hill, and I don’t know what I would have done over this past year without her friendship.
She has seen me through one of my hardest seasons in life without even knowing me very long. It would have been easy to say that being a friend to someone dealing with so much was too much to take on. It hasn’t been an easy year for her family either. But instead, she stepped up and has become a cherished friend to me.
I am slowly taking down my Thanksgiving decor because I know on our return from visiting family we will be in full swing for Christmas.
But I want to offer a final thought tonight on Thanksgiving.
Being thankful is a choice.
It requires acknowledgement of the things you have.
It requires you to value those things in your life.
And it requires you to decide to show appreciation for them.
We all know the saying “the grass is always greener on the other side” but how about “if the grass is greener on the other side, there is probably manure there.”
During this Thanksgiving season, choose to see all the blessings God has given you. Give thanks for those things.
And I encourage you to spread that thankful feeling through generosity and kindness.
We all have something we can give whether it is our money, our time, or simply a kind word.
I promised you all a special Halloween post, and I intended for it to go up on the Thursday after Halloween. However, life isn’t always what you expect, and Halloween took its toll on this mama. We’re going to rely on the old saying “better late than never” and just let it be.
I love the last quarter of the year! That sounds weird, I know – last quarter. However, my birthday is in September, and we are big college football fans as well. So for us the fun begins in September and continues straight through Christmas. (My spiderwebbed chandelier)
I love traditions!! For every event or holiday our family celebrates I have a short list of things that must happen. In October, we always visit a pumpkin patch, carve a pumpkin, and go trick-or-treating. (There are always festive outfits involved too.)
In every place we have lived, I have found one particular farm I loved. We always go back to it for the pumpkin patch and games every year. (It’s the Great Pumpkin, Charlie Brown!)
I love the height chart signs they put up so you can take your kid’s picture year after year and see how much they have grown. 💕 When you move often you obviously can’t visit the same one year after year, but I still love the sentiment!!
If you’re in an area where Farms and pumpkin patches aren’t easily accessible to you, I would suggest planning a trip one year! They can be a lot of fun, and I have found the smaller, less commercialized ones are better.(This corn maze had a bingo game to play as you went through. Alexa got really into it!)
My kids always like the hay ride, corn maze, and face painting. When we lived in Mississippi the farm we went to had pig races! (Afton rides in the stroller through the corn maze!)
Last year we visited a farm here in Georgia that had a rotten tomato sling shot. Like I said, the more simple = more fun sometimes. (This one had a cow train. Afton refused to ride with Alexa. She was upset about it, so Chad jumped in one as well. His knees were scrunched to his chest, and I got a good laugh. I told Alexa that is true love.)
Pumpkin carving for us has changed over the years too. We started off painting pumpkins. Then we all wanted to carve one, but carving is a lot of work!! For this year, we let Alexa pick a pumpkin and the carving design. The idea was that Chad would clean it out, and Alexa would do the carving. But like I said…it is hard work! She gave up and Chad finished it. Oh, well! Maybe next year. (Finished product!)
I had planned for us to have some fun themed food on the eve of Halloween and to watch a Halloween movie or two. Sometimes Halloween night is so chaotic you don’t really enjoy time together.
Life doesn’t always go as planned though and Tuesday morning before Halloween we woke up to Afton having a seizure. Thankfully, Chad was home. He was able to call into work, walk Alexa to school, and spend the day with us.
When her seizure is over she is unconscious. We administer a medicine to prevent a cluster of seizures to occur and put a call into her neurologist. Usually, she will wake up about 30 minutes to an hour later. (I’m working on a project with these frames which is why four out of the five are empty.)
She’s usually sick when she wakes up and then goes to sleep for about four hours. After that, she is starving (understandable) and grumpy (also understandable). Needless to say, it throws off your entire day. It was early evening before I sadly realized I hadn’t prepared any food for our movie night. My sweet husband said “we have to be normal” and ran to the store. He came home with some fall colored cupcakes. We all piled up and watched Transylvania 3.
Halloween morning we were at the neurologist’s office first thing. I was thankful they got us in so quickly! I knew we needed a medication change or we would end up in the ER on Halloween. Have you ever been to the ER on Halloween? I have once…talk about scary. (Another festive outfit!)
After the appointment, I tried to wrap up the day for a normal night. There are some things out of our control, but we try not to let her condition keep us from enjoying activities. We aren’t going to be leaving for a couple’s only weekend, obviously, but we can still do Halloween!
(Afton is obsessed with jumping on the trampoline. She goes out every day multiple times!)
Last year we were new to Richmond Hill, so our friends invited us to trick-or-treat with them. Since we are in our new house this year, we wanted to return the favor.
We made hotdogs for the kids and white chicken chili for the adults. (I’m obsessed with the cute cat plates and witch napkins!! I ordered them from Shop Sweet LuLu’s. I get all my best party decorations from there!!)
I attempted to make mummy dogs for the kids. You wrap crescent rolls around hotdogs so they look like mummies. I saw one on Pinterest where they actually cut arms and legs and I wanted to try those. (Halloween morning we had donuts for breakfast. Might as well indulge the entire day; right!)
I had not allotted myself enough time for the mummy dogs, so I only made four to make sure each kid got one. I would say one out of my four actually looked good. I wish I had a picture, but I forgot. I have a plan to try again next year and maybe roll my crescent dough out thinner.
We had some other fun treats too!
(I called this pumpkin juice – but there was zero pumpkin involved. I couldn’t find the cheese balls anywhere that you see people using for “pumpkin poop”. As I grabbed the bag of cheese puffs I realized they grossly and more closely resembled poop.)
I like for my girls to coordinate in some way, but this year Alexa wanted to either be Katniss from Hunger Games or Hermione from Harry Potter. If Afton would have let me do the makeup and hair, I totally would have made her Effie from the Capitol. I knew she wouldn’t though, and Alexa decided on Hermione.
I had considered seeing if Afton would try to go to the door even if I knew she wouldn’t say trick-or-treat. She is never herself for a day or two after a seizure though, so we got her dressed as her favorite cartoon character Shine from Shimmer and Shine. We have this adorable wagon that looks like a carriage being pulled by a horse. We just let her ride, and in true Afton fashion, she made herself quite comfortable and managed to get plenty of attention for her cuteness. (Head propped on hand, foot hanging out the side! 😂)
We ended the night with a special treat for the older girls and emptied four cans of silly string on them. I think this should be a new tradition- maybe a new prank every year at the end of trick-or-treating.
It was a good night, and Thursday I had all the Halloween things down and put away. (Thursday morning breakfast – post Halloween mess.)
I make it a point to not decorate for Christmas until after Thanksgiving, but I love the Christmas season so much it is HARD!! I have already begun recording the new Hallmark Christmas movies.
It got me thinking though. I don’t have any Thanksgiving traditions!! (Do your kids and/or hubs leave shoes everywhere? Drives me bonkers.)
What kind of thoughtful or sentimental traditions does your family have? Please leave a comment and maybe we will try out some of your traditions and share them here!!
Happy November, y’all!
Wow! Is it really almost Halloween? We have been so crazy with the move into our Little House in the Hill, time has flown by.
I am excited to begin to feel more settled and get back into a routine, and that means coming here and leaving a little piece of our life every week.💜
I don’t know about you all, but when I let one area of my life go it feels like everything begins to unravel. Before I know it I am aimlessly making my way through the day.
Not just the day, but every day…until I get it together.
It makes me so unproductive, and I get so behind on everything. I guess that is a lack of discipline on my part. I am either carefully planned out or a total mess.
So basically, I’ve been a total mess for a month, and now I’m trying to get it together. Ha!!(Not like this girl…she’s a beauty.)
Today, I start back working out…which I hate, by the way. I would much rather sit in a chair with a good book and a chocolate pie, but that won’t get me back into half the clothes in my closet…ok, more than half.
I have some Halloween decorations up even though we aren’t completely unpacked.
Ok…nowhere near unpacked. 😳
But let’s be honest…I won’t be unpacked for quite a while, and I can’t let the holidays slip by!!
I plan on having lots of cute pics for you all and a special Halloween post. 🎃
I am excited for the kids to be able to trick-or-treat in our new neighborhood. There are kids everywhere, and a lot of our neighbors decorate. It should be fun!!
We are starting our small group back at church this week, and I started hash tagging some of Afton’s pictures again with the #kcnq2.
I began doing that around the time I started the blog. Both were things I felt led to create in order to reach out to other families who might be going through some of the same life happenings.
When Afton turned 3, it was a really difficult time for me. I spent a lot of time praying that God would give me joy. (Not this Joy…)
I have found that when I am using the hashtag, people reach out to me and ask questions. It gives me an opportunity to share her story, offer encouragement and understanding, and it gives me perspective.
Of course, helping others whether through a unique understanding or encouragement brings you joy. But every time I share her story I feel a little bit of healing.
The perspective part is what I couldn’t anticipate. It occurred to me after a few people contacted me that they looked at Afton and had hope their child could turn out as well.
With a KCNQ2 diagnosis you don’t know what to expect. Will they walk, talk, sit up, feed themselves?
With all the struggles we feel like Afton has, we are so blessed. She runs and sings and climbs and eats….man, can she eat some days.(It was nearly impossible to get a good picture for all the goldfish eating!!)
That is perspective. How can you walk around in sorrow for what she can’t do when people are looking at her hoping their child one day will do the things she can?
I have found too that people who don’t have special needs kids or even kids at all can appreciate and feel inspired by our journey.
It is easy to fall into a rut of seeing your glass half empty. But what if we all had the opportunity to walk in each other’s shoes?(I might have bought one very large pumpkin at the farm and my hubs was struggling!)
You might complain that your kids fight all the time. (That would drive me nuts, too.) I would love to hear my kids have an argument. (Only once! 😂)
Just to have Afton express anything verbally in a sentence she didn’t hear on tv or in a book would be amazing!
I want Afton to look at me and say “I love you, mommy.” But another mom just wants her kid to walk around the house – like Afton does.
And maybe you are struggling because your child can’t do anything for themselves. But there are parents who would give anything to be able to do everything for their kid one more time.
We could go on and on.
You hate your job – others want any job.
You’re single (and don’t want to be) – someone is in an awful, abusive relationship.
Joy…it’s a choice. (We know it…we just need to be reminded sometimes.)
And let me say this because it is important!!
When I say to choose joy or gain some perspective, that doesn’t mean whatever you’re walking through isn’t hard!! You hear me?
We are on a different journey for different reasons. Just because someone appears to have it harder than you or to be less fortunate doesn’t mean what you are going through isn’t a challenge.
What I am saying is that no matter the challenge you can still choose joy! You can.
So today, I am tasking myself in the house.
I will work out. 😏
I will love on my kids and pay my husband a little bit more attention.
And I will be preparing a cute-tastic Halloween post for you all to enjoy next week! 👻