Normal: Conforming to a standard; usual, typical or expected.

Even reading the definition of normal makes my stomach flip and churn.  For me the words “typical or expected” cut the deepest.  After Hattie was born, I was at war with myself and in denial that Hattie was not healthy “normal” child we had waited 37weeks to meet.  I could not bring myself to admit that she was NOT typical or usual.  Each of those first few months with her, I fought EVERY thought in me screaming…SOMETHING’S NOT RIGHT…because of fear of not conforming to the standard.  When all my deepest gut feelings were confirmed, I completely withdrew into myself.  How could this be, How do I process this, How do I look at her without crying…How do I look at her without grieving the loss of the “normal” life I had dreamed for her since her conception? How do I explain to her sisters that she is not going to be “like them”?  So many unknowns, so much loss of control.  Then I got angry with the Lord….How could you place me in this position of uncertainty.  How could you take her future from her. How could He not make her perfect.  How does a good God allow things like this to happen?  I remember a drive to work one night where I was talking…ok crying…to my dad about how I was so sad about Hattie and how I didn’t know How to process all of this.  I felt alone but I couldn’t even speak my feelings out loud.  My dad graciously told me “Its normal to grieve the loss of normalcy”

Bam.  That was it.  My emotions/uncertainties finally became clear to me.  I was grieving the loss of the normal life Hattie would never know.  I was going through the 7 stages of grief for Hattie’s normal life and didn’t even realize it.  How could I be grieving something that I never had or actually lost?  Some of you might have never heard of these “stages of grief” but it is a model that I see a lot of in Medicine.   Depending on the source, there are 5 or 7 different stages of grief as listed below.

1. Denial and Isolation                               1. Shock and Denial

2. Anger                                                        2. Pain and Guilt

3. Bargaining                                               3. Anger and Bargaining

4. Depression                                              4. Depression

5. Acceptance                                              5. The upward turn

                                                                       6. Reconstruction & working through

                                                                       7. Acceptance and Hope

These stages apply to losses and pain in life in various scenarios. Grief is different for each person.  Some do not follow a certain order.  Some circle round and round in the first three stages.  But the hope is that to get to healing, one takes each situation and walks through each stage to be able to move forward.  I don’t think moving ON is the right term because we never leave the thing we are grieving, it is a part of our story and defines who we are.  It’s the hopeful choices and steps we take forward that gets us to the next chapter of our story.  It defines your attitude and your choices moving forward.  It makes YOU in control of your thoughts and attitude toward the battle to come.

Now I believe that you can go through these various stages simultaneously (as I included in the diagram chart above).  When we first started on this journey with our Hattie K, I think I circled around through them all a million or so times.  Some days I would feel like I was on the upward turn but would sink back into depression because triggers are the worst.  Triggers are unpredictable events or reminders of the thing we are grieving.  Somedays it would spin me right back into isolation – It was overwhelming for me to be around other childrens Hatties age because it was this huge elephant in the room of how she was different.  Its taken almost 3 years for me to get to the acceptance and HOPE stage on a daily basis.  Its so important though that for friends to come along side those isolating themselves and encourage.  Like I had mentioned in the “loving special needs family” blog topic – invite us again.  Sometimes it’s a bad day – sometimes we might be in the depression stage but we will move through! We will come back into the light…some days are just harder than others.

I plan to make this post a series  “in the loss of normalcy” (only because 7 stages might keep you reading all day).  I am going to walk through the 7 stages of loss that were the biggest for myself in this journey with Hattie.  This week I will get through Stages 1 and 2.

Stage 1: Shock and Denial

Shock provides emotional protection from being overwhelmed all at once.   When I was first told Hattie had hypotonia and we needed to rule out all the life-threatening things – I was numb.  In medicine you create an innate ability to turn off the emotional “switch” as to separate yourself from the overwhelming losses you see and encounter everyday.  It’s a coping mechanism that for me can sometimes hinder me more than help me but allows me to move forward to the next patient and focus on everything else but what has an emotional hold on my heart.  I had been in denial of the truth about Hattie from the very beginning – often telling myself “shes just a slow starter” or “shes probably just struggling with tongue tie issues”. I researched quietly/secretly of what might be “wrong” with Hattie and then would stop reading half-way through not able to fully comprehend Hattie as being different.  When I was assured that it wasn’t just me noticing but she truly was not progressing by our physician, I flipped that emotional switch over so quickly.  I went into robotic motion and withdrew all my emotions.  I built a compartment with an impenetrable barrier around the deep wounds my heart and soul were feeling.  I was strong and I was not the emotional type – I kept telling myself.  No one could see me cry except James.  I had to put a brave face on for my girls because my terrified face was too much.  I couldn’t let anyone see that internally I was falling into pieces.  The uncertainty and lack of control sent my already anxious nature into overdrive – I started to have panic attacks.  So when it got to hard, I just turned it off.  Somedays I want to say that I’m not ever still in this place but that would not be the truth and THAT’S OK.  When someone is going through this phase, its ok for them to be a robot some because its probably taking ever ounce of willpower just to take one step forward, to get out of bed, to take a shower.  Let them live there for a minute.  Processing takes time.  I don’t know when exactly I moved into the next stage or if I kind of went there simultaneously but I knew I couldn’t shut off the emotions switch forever.  I had to talk about it.  I had to speak to my husband and my family.  I had to be strong for Hattie. 

Stage 2: Pain and Guilt

The pain.  The pain at times that you feel FOR your child cuts to your core. I was supposed to protect Hattie.  Did I work too hard during her pregnancy?  Did I do something to change her genetic code in utero?  Was there a way to know about Hattie before she was born to save her pain and unnecessary pokes/prodding/labs?  I’m a medical person – HOW did I not know this before??  I thought about Hattie graduating from high school, going off to college, getting married, meeting the man of her dreams and my heart breaks for her.  The whelp in your throat is unstoppable.  But truth is that the pain is all mine – Hattie was created for a special purpose and she will never know these losses.  She will only know the pains that come as a cost of her genetic condition not the pains of a life not lived as I expected or anticipated.  

The normal mom guilt that each of us feel after we birth our children was magnified 100x.  I felt guilt about my other children because I was having to spend so much time focusing on Hattie and what could be wrong with her.  I was nursing every hour.  Literally for months in EVERY picture I’m nursing Hattie.  The devil would get into my deepest of fears and occasionally would speak such deep untruths that I felt unhinged.  In my darkest of thoughts – I knew the girls would resent Hattie and they would resent me for having to always be with Hattie.  Hattie had taken their happy mom from them and given this broken, bits and pieces of a mom.  I hated the pain but then kind of liked to wallow in it at the same time.  I could stay in the place and feel something instead of lingering in the shock phase of feeling NOTHING.  It was easy to feel pain and people where OK with me staying in this painful place.  Encouraging me to stay there unknowingly by again repeating I’m so sorry. But I knew I had to fight for Hattie – Hattie needed more than my pain and my guilt was getting her no where fast.  

If you are still reading, yall are amazing.  Tune in next week for more on the Stages I have walked through in this journey of Hatties diagnosis and her “loss of normalcy.”

Blessings – Kaet

Podcasts Ive listened to this week:

Nothing is wasted Podcast by Davey Blackburn (went to grade school with James, has many great podcasts about grief and moving through it)

            Episode 95 – Karen Millsap

Whoa that’s Good by Sadie Robertson

            The World is a Lesson – Chrys Howard special guest

The Grove Podcast

Unexpected: the Path to the PRomis: DawnChere’ Wilkerson

Perspective is an amazing thing, I can talk to one person who saw the same thing as another, but each person describes the situation completely different from the other.  You see, we all have the ability to look at a situation and decide whether we want to embrace it and enjoy it or fight it, argue about it, or be miserable in it.

After thinking through the past decade of my life I am left with a rollercoaster ride of emotions, from extreme highs, to extreme lows.  There were things that happened that I had always dreamed would happen and then there were nightmares that came true that I never thought that I’d wish on myself or anyone else.  That said, I’ve come to realize that we all live in a world filled with people searching and striving for great success, and what that success is, and even though that success looks different for everyone, and even though there are certain things I’d love to have or do that might define success, I’ve come to realize that one of the greatest success over the past 10 years is that Kaet and I are honestly stronger today than we were 10 years ago.

You see, the reason perspective is so funny is because some people (including myself at times) could look at our life over the past 10 years and thought that our life seemed unbearable at times, and if I’m honest, some days it does and did feel that way.  However, as I look back on the moments that seemed unbearable, they now have become monuments in our past that helped to shape, mold, and define who we are today.  Because of the perspective we were given through Jesus, Kaet and I did not allow the unbearable moments to crush us, but rather we have become stronger because of them. Now, we can look back on those days and use it as motivation to get through the next challenge that we will face. The best part about perspective is that we can control how we perceive something, and we get to choose how we want to face this world in front of us.

If you had told me 10 years ago, that my life would look the way that it does now, I might have been pretty dang scared, to be honest.  However, I’ve realized that some of the things we are most scared of can become our greatest blessing.  

10 years ago Kaet and I moved to this little house in McKenzie, TN, and this is where we begin the process of becoming adults. In the middle of this season of life, I don’t think I would have ever expected to look back on this house with such joy, but I do and I’m incredibly thankful for this moment where it all real began for me and Kaet. The people we met and the lessons we began to learn in this house will alway hold a special place for us.

I guess if I had to give someone advice on how to live the next 10 years, I’d say, “Make it your own, enjoy every moment, fear nothing, love generously, learn from your failures, and remember nothing lasts forever.” 

Below are some pictures of our crazy life over the past 10 years, and I can’t wait to see what our pictures will look like 10 years from now.

I recently attended a conference called Passion this past week with a tour bus full of amazing high school seniors and collegians.  For the first year, James and I were able to attend together and do ministry together. I believe God has placed as a true calling on our lives and always has kept a passion for youth ministry in both our hearts.  As I sat in the Mercedes dome in Atlanta with 65,000 collegians praising Jesus and seeking to know Him more, I was overwhelmed.  The opportunities that this current generation has in front of them and at their disposal is astounding.  So as we enter into this new decade, I thought I might reflect on how the previous decade paved my current foundation.

From 2010 to 2020: 

Marriage.  I left my 20s behind and entered into my 30s. I went from newlywed to celebrating 10 years of marriage.  James and I challenged one another and loved each other even more deeply.  We discovered that counseling is important in developing communication skills. We discovered that when life puts us to the fire, it exposes the weakest spots clearer than ever and its ok to seek help. Knowing each other more only makes us stronger.  We were recently asked what our best advice would be to a newlyweds – we replied to communicate directly and  “Anything said between the hours of 1-7am are off the record.” yep. For us conversations between those hours are not allowed to be used in later arguments or make us arguing.  They are words that vanish from the page. But with that said acknowledging wrong is still a priority.

Another piece of advice was to not “worry about the other persons desires SO much that you both lose sight of yourself and your own desires”. James and I are selfless people but often we missed the mark with one another when we are so worried about making the other person happy and forgot about ourselves.  Here I am doing what “I THINK” James wants, and then here’s James doing what “HE THINKS” I want and before we know it, we have missed one another entirely.  We are so interested in supporting one another that we create unneeded conflict by not being direct with each other.  That concept only took us 10 years to figure out so lastly Grace upon Grace also helps in your marriage.

Family.  I had 5 pregnancies and 4 beautiful children.  Yes 5 pregnancies.  I miscarried in-between our first and second child.  I suffered what 1 in 4 women go through EVERY day.  It’s still nothing that the struggle of infertility can even compare to, but it was loss.  There was anger and grief.  There were words to the Lord.  There was brokenness that I never thought I could ever feel.  How could I be so upset about something that was never really mine, That I never actually saw or held.  Laken once told me that she had another sibling in heaven (I never have told her that I lost a baby) and I believe that.  I became a special needs parent.  That alone brings so much.  We were and are still navigating the journey that has been set before us.  I am a creature who likes control….No more control.  I was a creature that prayed everyday “God just please give me healthy/normally developing children”. God responded with a greater gift than I could have EVER known.  I feared special needs children – it was hard, it was different.  I grieved the loss of normalcy and then took on the new life of uniqueness.  I embraced the truth that “yes my child has special needs – let me tell you about it”. I went from avoiding the conversation to seeking out conversation.  God made my fear….my passion. 

Jobs.  My husband began working at Crosspoint as a ministry head in Recreation in 2011 and continues to do this PLUS now does 7/8^th grade ministry.  I’ll let him tell you how he never envisioned himself working for a church at another time, but I had a sneaking suspicion this would be a calling on his life.   I went to PA School, struggled through PA school, living apart from James for 1 year and then graduated from PA school. I began working in the ER in 2012. When leaving PA school, I was asked what I wanted to go into…Clearly, I remember saying out loud “I’m not sure but I know not Emergency Medicine.”  Boom – Lord said NOPE.  I believe now it was because out of all the rotations I did in school it was the one that pushed me out of my comfort zone the most.  Fear (tends to be one of my worst motivators) said NO WAY but God said MY WAY.  I have worked and met some of the most amazing people in choosing that path.  I have fought with myself – I have pushed myself – I cried, and I laughed – I lost sleep and I definitely have learned some wicked coping mechanisms, but I wouldn’t change it in anyway.    

Faith.  James lived life with an amazing group of young men – He formed bonds and we both have loved to watch them mature and grow.  The seeds he hoped to plant and cultivate slowly spurted plants and now are beginning to form trees and fruit.  It’s a joy in my life to watch these relationships that He values and loves so deeply continue through their adult lives.  We recently attended one of their weddings and watched as one of them set roots and foundations for his own family tree.  It solidifies the importance of speaking life and more importantly LIVING life with this next generation so that they may know HIS life and how that is, ALL that matters.  I ministered to an amazing group of young women (some of who I was able to spend time with this week at Passion which makes my heart so happy).  I was able to stumble through my own doubts, my own life to somehow speak life into theirs.  I love them and what they probably don’t realize is that THEY give me more life and Joy than I could ever have the capacity of giving.   

Community. We moved 11 times……yes 11 times and no we aren’t military…. We built 3 houses and discovered that we REALLY love building houses.  I don’t know if it’s because we absolutely LOVE our builders and their families in so many ways or we REALLY love design but we loved every part of the process.  We weren’t sure about our community for a long time – We did the classic 20s search for what and where we belonged, but it continually called to us and always made itself known.  It wasn’t until we struggled, and I mean STRUGGLED after Hattie’s birth and first years of life and my difficult pregnancy with Ryder that we had to finally ask for help.  God broke us and at the same time built us.  He showed us what the hands and feet of Jesus were and HOW IMPORTANT it is to be linked into a church body.  I don’t care if you like big, small, traditional, contemporary, acapella, Baptist, Methodist, episcopal, Lutheran, catholic – BELONG SOMEWHERE.  Online church is a great temporary or transitional method of attending services but it leaves you alone.  It only feeds the world through a screen– phone, tablet, Television – I encourage you to seek community like we are.  Not only church community but people. People that will be your people through thick and thin.  I’m an introvert, I get energy from being alone….so you can imagine this TERRIFIES me but after this decade I have learned and seen the importance of this and it has become a new vision for our next decade.

As it was spoken about so much in Passion – Your choices in your 20s will dictate your life in your 30s.  I find this so true.  I was CLUELESS before my 20s but my 20s brought about moments that forever would shape my life.  My 20s brought me some new identities – Mother, Wife, PA, Special Needs Parent and Renewed identities – Sister, Friend, Daughter

But of all these identities Christ Follower is the one that will continue to feed into my next decade.  Thank you Jesus Thank you.

Blessings,

Kaet

I haven’t wrote in a while (this is James), but I have binged watched a lot of Netflix.

Because I haven’t wrote in a while, I have kept y’all hearing some really great and hard parts of our lives. However, the great Bear Bryant once said, “if you’re still talking about what you did yesterday, than you’re not getting anything done today”.  So, with that said, let me just share what’s happened in the past week and what God is doing in our lives.

I became a vegetarian 2 weeks ago…I have felt like hell for 2 weeks, and my wife assures me that I have had the worst gas and indigestion on the planet…she told me last night while sleeping, that I coughed and farted at the same time, so for breakfast she made me bacon.  

I’m not a vegetarian anymore.

I’ve learned that my marriage is more important than a diet, and I’ve decided to just eat less meat and more vegetables. (I also had 2 Mcdoubles from McDonalds today, I really jumped off the wagon)

We went to a wedding without any kids.  I’d like for you to think that I’m an amazing father and I missed them every second of the day, but that’s not true. I suck at lying.  But it was the most amazing wedding I have ever seen and we danced all night long…I am concerned about some videos and pictures that may have been taken of me that night, welp, you win some, you lose some.

I think it is absolutely amazing how God will speak to you, when you choose to listen, Kaet and I had 14 hours in the car traveling with just the 2 of us and we didn’t have any Netflix to distract us from having real conversations, and we believe God used this time to align His vision for us into one vision, not 2 separate one.

Here it is: God has placed a ridiculously big vision on our hearts to change the world and culture of how people view and treat people with special needs and disabilities. We don’t know what that looks like yet, but in time we know God will make that clear to us.

Ultimately, we have heart to see everyone live into how they’ve been created, no more, no less.  We were not created to be like anyone else other than our self, and the same goes for people with special needs, why would we expect anything different from them, and why wouldn’t we embrace how they have been created and celebrate the amazing gift that this world has been given.  Believe me, Hattie and all people with special needs have something that none of us have, and we are robbing our self of an amazing blessing by not embracing the gift that Hattie and so many other children and adults with special needs have.

That said, it seems like this vision is something that is completely unattainable and I have real fear when it comes to sharing this vision, because 1) it seems impossible 2) By voicing this, I can no longer do nothing 3) We can’t do it alone.  However, these reasons are confirmation to me that this vision, is from God.  

Now, here’s the coolest part and the confirmation of the hope and vision that has been placed on our hearts.  Since our trip, we have several conversations with people, that can only be described as “God Meetings” and then tonight.  

Tonight, Kaet almost didn’t bring our kids to church, and I almost encouraged her to not bring them, but I kept my mouth shut, and she brought the kids.  This proved to be the absolute best decision of the day.  When Kaet was leaving with all the kids, a young High School Student stopped her and gave her a letter, and simply said, “This was a school project, here you go.”

Now, get the Kleenex out and read how Hattie is already changing the world at age 3.  I mean how many adults reading this, have received a letter like this, and Hattie can’t walk, talk, or write!  This is just another reminder that people with special needs are way better than me.

I find myself often battling different things Internally without letting anyone in. If I have learned anything in this journey with Hattie, Battles have become my new normal. Battles with insurance, Battles with emotions such as grief, joy, anger, anticipation, Battles with fatigue as I found myself burned into the sun last December and with these battles I often forget that I am not alone. In this fallen world we ALL have battles and part of life is learning to open up and express when we are struggling. Another norm in the special needs world is the expectations we put on ourselves to be MORE for our children. I laugh at this because I often get the term “superwomen” spoken over me. All the while I’m internally screaming and feeling far from super. This fall I pushed myself to the point that I lost myself. Working as a full time mom by day and full time PA by night pushed me further than my body could allow me to go and for the first time I saw that I couldn’t do it all. Huge pill to swallow for this “I can do it all” personality type. I allowed myself to forget myself. I went on autopilot. I stopped investing and focusing on things that matter the most such as my marriage, my Lord and myself. When you allow yourself to loose yourself the devil can get in the cracks. I felt like he was tapping on each weakness with a tiny hammer and my complacency was allowing them to shatter. I was so busy pouring out to all the special needs of my children and into caring for others at work – I forgot to refill. I got to a dangerous point in my relationship with my spouse. We needed help and fast – but I was willing and wanted to go. It takes a lot to say HELP out loud and to those around you but I did and so did James. You always here the saying “marriage isn’t easy” and yes it’s ridiculously difficult. You are asking 2 people to live as one. To be far from selfish. To encourage and uplift each other even though we literally do live on separate planets. It’s down right insane but it’s important. Saying that I was overwhelmed was one of the most difficult yet important life lessons I have learned yet. Jesus put this in perspective for me as he sat in the garden asking (I envision yelling out) to God to take this cup from Him. But the most valuable lesson in this is I AM NOT ALONE. I have a partner that would literally hang the moon for me – our problem was that we cared TOO much for each other to the point we assumed and missed the mark on what we needed. It wasn’t that we were broken. It was that we weren’t communicating and oh wait LISTENING to what we needed from one another. How great a lesson – be still and LISTEN. I think in this contemporary life asking for help and mental health is slowly getting better but it is far from perfect. Life is Hard and Life is busy – we aren’t super heroes alone. We are super heroes by those who are helping hold our cape and lifting us up in the air. If you look at all the so called super heroes in movies – there’s always their person….or team….they never work alone. Battles aren’t meant to be fought alone – acknowledge your people – love your people – talk out loud about how you are feeling – sing out to the Lord in your suffering. When people ask how you are doing, Go deeper – be real – be honest because more often than not, THEY get it and THEY have lived it.

To all my special needs parents – I see you, I know you, My heart aches with you. This often invisible battle you’re fighting we all know. You are not invisible. The heartbreak you feel for your child is our heartbreak. Your battle is my battle and you aren’t fighting alone. And the best part – We have the most incredible special children to fight for everyday. Soak in that one smile, that one word, that one touch, that one moment that pushes you through the rest of your restless day. As I read the blog of another special needs mom who lost her beautiful little girl with some of the same story as my precious Hattie my heart was heavy and my soul hurt. But the most amazing thing is she is choosing to battle it out WITH her people and Holding fast to Jesus. Live in the moment my friends. Don’t loose yourself in the invisibility but take it on as a cape and learn your limits. Call your weaknesses out one by one – so you control them and not the opposite. Your super hero cape is held up by many.

Thank you James for loving me despite myself. You stitch my cape together daily. I’m so blessed to be living this circus life with you 🎪

It has been a wild month for the Jettons – It has been filled with ups and downs and all arounds. We have had quite the time with Ryder James lately and his new issues with reactive airway disease. It’s interesting that when you think you have conquered a lot of things (mostly with Hattie) that you find out you know nothing about other things – the game of parenting is such a roller coaster.  Little man has been admitted twice since 10/23/18 for his airway issues having pneumonia with the first admission.  He is such a ham though and has brought such an amazing amount of joy to our life.  Hattie is slowly growing fond of him even saying “bubba” (brother) for the first time last week – Laken is loving preschool and is full of emotions good and bad, and LOVES a good conversation on the phone. Isla Kate is in pre-vpk and had her first program which she cried through but HEY stayed on the stage.  She loves a good task especially to clean with the mini vacuum and continues to make us laugh with her random funny sayings and giant beautiful smile.

10/31 we moved….yes again…but back to our community in Niceville.  God showed up in a HUGE unexpected way and we are still reeling from it.  It started when I told James that I was going to go part-time due to Hattie needing me so much more and that I would feel more comfortable not building “Hattie’s Home” as we so lovingly call it right now and finding a bargain home for the right price that I could cut back on work.  I truly felt that the Lord has been speaking to me in this area and took a step – well He met with a whole golden staircase! The next day we received a text that our house we were renting was under contract – praise GOD – then the next day our realtor, Dana Topel, was showing us houses and pulled out of her back pocket a remodel that wasn’t listed that she knew would be perfect for us AND IT WAS – she has always been our guardian angel when it came to any homes we have purchased and the Lord worked through her BIG time. Best part is that it was our builders who were renovating the home, Huff Homes, and they helped us to put in all the same flooring and wheelchair ramps for Hattie K so its more than we could ever need at this point.  At some point I believe that I will start trusting God – but then I would have to never worry and who wants that!  Moving back to our community even though I am still commuting has been the biggest blessing – Hattie needs community and we need strength.

Hattie started school with the big girls in August and is absolutely loving it! I had a lot of anxiety about it but her teachers and the wonderful ladies at Crosspoint Academy have made us feel so welcomed.  We made her a small bumpo wheelchair from a DIY instructable post a father of a son with spina bifida had posted and Hattie has taken off.  It’s definitely been a transition for James and I because it is our first real thing in public that open us up to questions.  People are starting to realize Hattie is different and sometimes its a hard pill to swallow.  We have to believe that all special needs parents experience that anxiety/fear/nervousness/dread of bringing out the “equipment” that sets their child apart but we have to remind ourselves that HATTIE DOESNT CARE! She loves the mobility and we love her joy.

She is now rolling from back to front and bearing more weight with the help of her AFO braces. Ryder and Her do races around the living room – rolling into each other – with only the occasional collision or protest from Hattie because Ryder pulls her hair…or she bites back (whew! yes we are working on that)  She works so hard for her therapists and is continues to make wonderful inch stones.  She sits better in the bumpo and is almost to the point of sitting up by herself for small periods of time.  She is feeding herself small foods so much better and we swear she NEVER STOPS EATING. 

Laken and Isla love to sit behind her and help her play with toys.  They LOVE to push her around in her wheelchair especially up and down the ramps in the backyard…we have to watch to make sure they don’t pop any wheelies…but for real Laken is crazy.  At school Hattie has made many little friends who love to bring her toys and just talk to her.  Hattie truly seems to love the interaction – I was so fearful in putting her in a class setting but again I have realized that Hattie knows no fear and sees no difference, Mom needs to stop projecting her fear of rejection on Hattie.  When I get fearful of “the questions” or “the looks” – Hattie is smiling and has a never-ending joy through it all.  Hattie is saying Dada, Mama, Bobo pretty consistently – she says La, Ya, Seat, Dog often.  She LOVES outside and points to the backyard all the time.  She is such a goofball and makes everyone smile all the time – even Ryder. Hattie turned 2 in August – we had the best unicorn birthday party for her and she had so much fun

                     

This Sunday our church will broadcast our advent video about Joy and Hattie’s Story.  The more I watch it (we got to preview it before hand) the more I am humbled and brought to tears. My gut reaction is to hide and not to open myself up but I know the Lord wants me to allow more people into our circle. God designed fellowship – He did not create us to be creatures that are alone. Hattie needs people and we need people.  Our Journey, as we were made aware in April after Hattie’s diagnosis, will not get easier but will continue to wind and find new challenges.  Having people to pray, support, love on us is so important.  Love to all – Keep praying for Team Jetton and all our many winding roads!

  

Kaet

We’ve had a lot going on (I know shocker) and I’ve had a lot of time at home since beginning of February due to maternity complications and being taken off work – so this week’s blog is a little different because I’ve been chewing on some thoughts surrounding my sweet covenant group girls and their hearts/minds/love for Jesus- this one word and the life that surrounds keeps ringing and threading through my mind.

Redemption

The definition of redemption is 1.the action of saving or being saved from sin, error, or evil

I meet with a small group of girls in high school that are amazing thinkers, challenge my faith in amazing ways and have seriously the biggest hearts.  When talking about sermons and speakers – one thing I hear so often is resounding theme of testimonies that reflect need for serious redemption – whether a life of various addiction, criminal activity or disbelief in God completely.  I remember as a youth hearing from speakers about their stories of walking/diving through/in sin and then returning to the Father and finding powerful redemption. That “turning moment” for their lives is so clear and evident. Growing up it was confusing for me because in a simple mind I almost felt to live life with God to the “fullest”- one must walk through the darkness and return to the light….but what if I just chose never to walk those paths….would I still be as adored and loved by God as my counterparts… would my Redemption story be as pivotal as theirs? So here’s my take.

Redemption is the action of saving OR BEING SAVED from sin, error or evil.  There is the past tense that we are saved because the action already as occurred and then there is the present tense of BEING where the Lord is always saving us. Some stories concentrate more on the action of saving and God is using those stories in amazing ways.  Some stories just as powerful sit in the present tense of being saved – that’s where I believe I fit in.

I am not a person with a perfect life…I have made poor choices but never serious ones that lead to any horrible consequences or damage.  Jesus died and rose – he is my past tense that enables me to live in the present tense.  My relationship with the Father is as much adored as the next because I’m choosing to live in the present category.  I have not missed out on a “deeper experience” with God because He’s always been there with me.  He’s deeply connected to me and has never left my side.

Something so important for our youth to understand as they choose to walk and learn God’s way is that there doesn’t have to be a tough road to find the redemption. Sometimes our “turning point” is just deciding to follow Jesus and never look back.  It is free and powerful – available for the taking -because we are already so loved.  It’s GREAT to have a testimony that is not filled with sin and seriously poor choices – Walking with the Lord allows us to avoid a lot of broken pieces and baggage later on down the Road.

As a parent now to 3 little girls (yikes) – I pray that each day for them.  I pray that they will find the love for Jesus on their own and know that it is deep and true and requires NO baggage.  They are deeply loved and continually prayed over. I pray the Lord will send a man who loves God just as much as they do without them having to dig through the trenches.  They are beautiful, joyful, creative and strong and have already been redeemed because that is how they were created. The sacrifice has already been made for them.

I prayed to accept Jesus in my heart in the 3rd grade at VBS in a classroom tent.  I have gone to church continually since I was 5 – I actually still go to the church I grew up in!  I was active in youth and praise band.  I have never tried any type of drug. I did drink before I was 21 but it was only a handful of times because I did not like not feeling in control and my mom had told me horror stories of scenarios where if not in the right state of mind I could get taken or hurt – Like check the back of your car a million times prior to getting in because a man might be there with a knife stories…confession – I still sometimes drive at night with all the lights on…but she made me aware of the darkness and danger in this world and I appreciate that so much now.  I loved school and excelled in it. I was a “nerd” and studied a lot – sat in the front of the class – tried really hard. I struggled with purity but held firm because I knew there was a bigger plan for my life.  Love was greater than the fleeting feeling of passion or being “wanted” even though it is so hard in this day and age.  I was in one unhealthy relationship that changed me for a few years, I was really awful to my parents but I wizened up without some horrific outcome with some great counsel from Godly women I sought after and God placed in my life at a pivotal moment. The greatest man I had ever met found me and sought after me relentlessly in college until I agreed to date him and still does to this day thank you Lord!  I have read the bible from front to back but don’t quiz me on the old testament.  There are days when I am in the word and there are days when I am living in the word.  There are days when I yell at God and He’s totally fine with that (I think…) and days when I sing praises to Him constantly. There are days where my heart breaks and I have no words to share with Him. Sometimes I’m a great wife and all star mom (enter sarcasm here)- and other days I curse and raise my voice and irritate my spouse.  My testimony did not take me down any path of destruction but my story is still important and used by God. I’m still deeply loved.

Bottom line, In ALL things God works for the good – even if we can’t see it or the good is far off in the future.  God uses the broken just as much as He uses the steady climber.  Since the creation of man – we have ALL needed redemption from ourselves and Thank the Good LORD He already saved us through Jesus. – Kaet

 

 

We feel so blessed for all the amazing medical professionals we have in Hattie’s corner. James and I had a phone call with her genetics counselor from Baltimore to obtain this information last Friday. It was humorous only because I totally blew the timing and forgot Baltimore was on eastern time – so instead of being at home with our notepad ready….we were getting family lunch at sonic with all 3 kids awake and loud in the back ground. Our genetic testing we most recently had performed after visiting Kennedy Krieger showed a diagnosis for Hattie.

Hattie was found to have a de novo variant in a gene called GNB1.  This is a rare, recently discovered disorder.  Frequent characteristics include hypotonia, global developmental delay, intellectual disability, and epilepsy.  There is no cure or targeted treatment for GNB1-related disorder at this time.

 

GNB-1 Syndrome was recently discovered in 2016 and so limited research is found about it.  Hattie’s hypotonia since birth, global developmental delay (motor, speech and cognitive), Slow Growth and eye problems all fit into this diagnosis.  GNB-1 would be a diagnosis under the CENTRAL (brain/genes) pathway which is different from what we originally were thinking.  Now that Hattie is 20months we are seeing that she is falling behind in all areas not just with her motor development.  This syndrome is highly linked to epilepsy and seizure disorders so it means that we will need to monitor her closely for any development in that area.

We traveled to Birmingham on Easter for Hattie to have an MRI under anesthesia at Childrens and then have her 6month followup with her Neurologist.  The MRI of the brain showed no abnormality except for slight enlargement of 1 ventricle (which doesn’t really mean much).  Her MRI of her spine showed something called a syrinx (fluid filled cyst) within her spinal cord which is small but should not be contributing to her symptoms. More than likely is linked with the genetic disorder and we will just have to continue monitoring it as she grows.

The visit with her Neurologist was pretty uneventful which was a pleasant change from our normal news.

I think back to the conversation on Friday and the question “I’ve just downloaded you all with lots of information, do you have any questions?” and laugh a bit.  From our hour long conversation we basically know that we will know more in 5-10 years….

• Hattie may never develop normal speech but might could use technology to help her communicate with us.
• Hattie may never walk – the 2 children with her variant are older than her and still in wheelchairs
• Hattie will always have Hypotonia – she may get stronger but there is no way to know what that looks like
• Hattie may develop seizures
• Hattie needs yearly Blood drawn (aka CBC) because there was one child that developed Leukemia due to the Gprotein issue
• Hattie will always have Global developmental delay

Bottomline – We have a beautiful happy special needs child that we will push and fight for, pray for and love, Continue to take to her therapists as much as we can. Learn more about and Try and discover what she needs as we go.

We have cried and laughed, are grieving and praying – but at the end of the day our Hands are going up.  We praise the Lord for the gifts that all our children are! We know without a doubt there is always something working for the good and that all we must do is put one foot in front of the other. So many families don’t have an answer and here we are after less than 2 years with an answer!

We will continue to keep you posted on this crazy Jetton life – P.S. I’m super pregnant and at home from work due to heart palpitations. I have a ginormous baby boy in my belly and I can’t kick him out for at least another month – preferably 6 weeks.  Pray for us – especially James, he soooo needs it!