Family

The NEW Diagnosis

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We have entered a new chapter in our lives with a NEW DIAGNOSIS over Keller's life.  

A couple weeks ago we had a follow-up appointment with Keller's pediatric neurologist who diagnosed him on the autism spectrum in 2014.  We initiated the meeting because we felt that it was time to talk with her about Keller's diagnosis as it had become clear to us and his other therapists and community that he had truly lost all his symptoms.  

This appointment put me in a very tender and emotional state.  I was sure of what I had seen in Keller's life and deeply certain of the incredible and miraculous strides he had made since his diagnosis, but I also trust this expert and her opinion and wisdom into Keller's life.  Without her concrete diagnosis on Keller's life when he was 22 months we would NEVER be where we are today.  She sat at that first appointment and even before she had written up a full assessment she knew unequivocally that he was on the autism spectrum.  She left no doubt or questioning in our minds when we left her office and her certainty helped launch us into our new mission with Keller.  

However, as much as we are eternally grateful for this doctor, being on the doorstep of meeting with her again made me feel like my own fate was in her hands once more.  I felt vulnerable and extremely emotional the entire day leading up to the appointment.  There are times still in our journey with Keller when a wave of emotion, grief, or fear will wash over me about his life and I feel again like I might drown without the anchor of God to hold me in the storm.  We are blessed to have an incredibly supportive community around us and so some of our closest friends prayed with me during that day as we anticipated the appointment.

At last the appointment arrived.  Casey was confident, Keller was clueless and happy (as usual) and I was an emotional wreck.  Quickly in our conversation Dr. Schleigal asked why we were there and we told her about our desire for her to assess Keller's progress.  She asked Keller some questions and we continued to chat and then she said "Well he is obviously NOT on the spectrum!"

This sentence that just rolled of her tongue has absolutely has changed our lives.  Our son Keller does NOT have autism anymore.  Keller is NOT on the autism spectrum.  The new diagnosis is that we have NO DIAGNOSIS.  We just have a happy and full-of-life little boy.

This was what we had always hoped for but also were scared to dream of.  A couple years ago Casey and Kieren started praying every night that Keller would lose his diagnosis, but it was too scary and vulnerable for me to pray.  For me, God was still GOOD even if Keller never lost his diagnosis.  I didn't NEED that miracle, I just needed God in the midst of whatever our story was supposed to be.  But over the last year it has become glaringly clear that Keller does not have autism, and to let myself even begin to accept that has been huge.  But this appointment, this day with our doctor, was the confirmation of it all.  And it has been so good.

Honestly, it still feels unreal when I think that I DON'T have a son with special needs now.  It became a part of our identity as a family, not just for Keller, so it's strange that the term no longer applies.  We now look ahead to our future and dream with new lenses for Keller.  So much is possible, so much is tangible, so much is even beginning to happen now.  We have a new diagnosis of a son WITHOUT autism and our lives ahead look rich with promise and potential.

You Went BIG

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New friends of ours showed up at Keller's 6th birthday party this weekend with their son, and the dad took a look around the kitchen and said, "WHOA, you went BIG!" It was just a passing comment to him but really struck me as I glanced around our decorated kitchen.  Ummm, yes it seems that after HOURS of party preparation for Keller's superhero party, we had in fact gone REALLY BIG.  There were decorations, games, themes, food, banners, and more.  It was SUPER BIG. 

I thought later about that comment made by the father about us going BIG because I hadn't realized it before.  We always love celebrating birthdays in our home and as a family love putting together a party, but this one had gotten pretty extreme.  What happened that made it so BIG?

A quick reflection easily revealed that my heart is overflowing with thankfulness and celebration as Keller has recently lost his autism diagnosis.  There seems to be SO MUCH to celebrate.  Keller's early birthday parties were only a few people, and even that seemed to completely overwhelm his little head and heart.  As the years have gone on we have added people to his parties and they have become more big and boisterous.  But this year we have been planning his birthday party for MONTHS and he has been filled with eager anticipation for it.  He loves his friends, he loves a party, and he loves to celebrate.  We were all looking forward to it.

But maybe I was the one most looking forward to it.  To gather a big group of people and have a ruckus and rowdy celebration for my son is a true gift and one that I don't take lightly.  My son, who use to have autism and would literally SCREAM if anyone walked into our living room, now planned an entire party (and dinner that followed) for the people he loved and relished in every moment.  Truly, he soaked up all the love, attention and friendship of every single person that was there. 

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It.  Was.  Stunning.

So yes.  I went BIG.  I went REALLY BIG.  I made too many decorations and I made the whole family dress up like superheroes and I bought WAY too much food and the whole thing was super over the top.  I went BIG.  But for my miracle boy I absolutely love BIG and celebrating all that God has done in his life.

Happy birthday dear Keller.  For you, my son, we go BIG!

Choosing Bravery

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Our son Keller is starting a new chapter in his life this year as he is now attending Grade R (called Kindergarten in the USA) and it's been a huge transition for him.  When we went to visit the school and had the 'meet the teacher' day, he ended the day crying because he was so overwhelmed and just wanted to stay at his playschool.  My heart was broken watching him struggle and we began to tell him over and over again that he was BRAVE.  He is BRAVE.

Now Keller has started school, and today was a true revelation in my heart that Keller doesn't need to become brave because KELLER ALREADY IS BRAVE.  Today Keller went to school just as normal but a friend who teaches in his school sent us a beautiful picture of him as he chose to be brave today and get dressed up as a skeleton which he had never done before.  He was smiling with pride and my momma heart soared to know he is choosing bravery in something that was an obsticle before.

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Every day at school, without the help of his obsessively loving parents, Keller is choosing to be brave and step into new and unknown things.  We watch from the sidelines and cheer from the background and couldn't be more proud of him.

But as I cheer I can hear God speaking very clearly to me about my own path and the obstacles that are in my way.  Just as we have been telling Keller to be brave, God has been telling ME that it's my turn to be brave.  It's time for ME to choose bravery.

Having a child with special needs is a journey that is hard to even describe to those who haven't walked this path.  You live constantly planning, thinking, therapizing, sacrificing and praying for your child and each day is a challenge to tackle.  We have walked that road for three years, but now our little miracle is flying into his own world and living bravely all the things we have taught him.  It is stunning to watch your child thrive, but can I be honest that it's also strangely painful to see your child fly away.  I have walked with Keller every step of his past three years and what he is doing now is beyond my wildest dreams, and when I am honest it also causes a sharp pain in my heart because I am no longer needed.  This calling that was put on my life to be a special needs mother, the calling I never asked for and never-ever wanted is now part of my identity.  But what happens if it's NOT my identity any more?  What I never wanted is now so deeply who I am that I do not know how to separate from it.  Part of me doesn't want to separate from it.  All of me doesn't know how to separate from it.

And so in this confusion and heart pang God is telling ME now to choose bravery.  God knows my hurt and searching and has gone before every moment I am feeling.  God is telling me to choose to be brave, even when I would rather cry and be overwhelmed like Keller has in previous times.  God is telling me to BE BRAVE.  May we always choose to be brave.

“I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear. – NELSON MANDELA

The Edge of Autism

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Our days with autism, could be numbered.

We are walking a journey with our Keller James that is miraculous and unbeleivable.  It is at the same time hard to take in and yet all we have wanted to see for years.  It's the days we dreamed of... when we were brave enough to dream.

Keller has finished creche (preschool) and in January 2018 he began Grade R (kindergarten).  He attends the same school Kieren attends, a normal primary school filled with neuro-typical boys and girls.  The school does value inclusion and has a few kids on the spectrum and with other intellectual disabilities, but it looks likely that Keller will not be one of them.  For sure, he was nervous about the change to 'big school,' but he is ready, and we, his biggest fans in the world, know that he will thrive.

At this point we have been told by multiple therapists that Keller does not have ANY of the symptoms of the autism spectrum and some have recommended that we meet with our diagnosing doctor about taking away his diagnosis.  This can happen, where a child would 'lose a diagnosis' because of intervention and an overcoming of symptoms.  We see Keller still struggling at times with focus and other tasks, but we agree that truly his defining autism symptoms are no more.

I someone wonder, with a huge lump in my throat, HOW DID WE GET HERE?

How did we get to a point where our child has no symptoms of autism and absolutely thrives in every part of his life?  Was that other child we had just a dream or was that really our life?

We know that Keller's autism diagnosis at 22 months was very real and it was very accurate.  He met all the criteria for autism and had symptoms that were moderate.  Our lives were completely turned upside down by the diagnosis and our family became intervention experts and all personal therapists for Keller.  

We have walked a three year journey with Keller where every moment was an opportunity to have therapy and help him learn and our efforts have proven fruitful.

What has been the most fruitful in this journey with autism has always been PRAYER and the PRESENCE of GOD.  We have always known that God was with us and have always seen His hand on Keller’s life.  There are changes and advancements that could have only come by a miracle and we never will forget what God has done.

Why We Fight

Many of you have learned that recently we are fighting to stay in South Africa as we have had continual visa problems that are really coming to a head.  We are fighting to stay here in Africa and continue our work.  The question has come up, the GREAT QUESTION is WHY ARE WE FIGHTING to stay in Africa?  Why the fight?  Isn't it possible that all these problems are a sign that it is time to go?  Isn't it possible that the children might do better going to schools and receiving what they need in America?  Could God be telling you it's time to move on and give someone else a turn?

*Someone LITERALLY suggested that last comment to Casey's face*

These are HONESTLY all great questions.

Questions we have been asking, praying over, and wrestling with for years.  We have taken every part of our call here in South Africa and completely surrendered it before the Lord.

We always tell our volunteers and interns that they are not needed here in South Africa and God can do whatever He wants with or without us.  The same is true for the Prince family.  God does not NEED us in South Africa.  He can do His will WITH or WITHOUT us.

Painfully and humbly we have surrendered this before God and truly feel that He has responded.  

God doesn't need us in South Africa but we feel He wants Casey to continue leading Ubuntu Football.  Wrestling with these visas and our call has really clarified that our family was called here to be the heart of Ubuntu and lead it from our family.  While Casey is all the time with Ubuntu it is part of the heart of our family and we all make it possible for Ubuntu to be it's best.  It's our call together.

God doesn't need us in South Africa but we feel he wants me to continue community development and ministry in Ocean View.  Truly it's the place God has planted my heart.  I love coming home to the people of Ocean View and my heart beats for the community.  My ministry continues to evolve in Ocean View but the goal is the same - point people to Jesus as I live among them as mother, sister and friend.  Furthermore, God has called me to learn and grow as I pastor and assist at Hillsong Church and I love this place of growth in my life.

God doesn't need us in South Africa but He wants to tell Keller's autism story here.  Early on in our journey, soon after Keller was diagnosed, I was crying out to the Lord asking him WHY, HOW and WHERE He was going to work in the darkness we were facing.  I clearly heard the Lord tell my heart that He wants to tell Keller's story in Ocean View.  Over the past year and a half God has shown up time and time again in miraculous ways as He changes Keller's heart and makes him a new boy.  Keller is thriving and growing daily and we have an incredible team around us tackling autism together.  And our boy LOVES Ocean View.  His best friends live in Ocean View and he delights in this community; something completely foreign to normal kids with autism.  God wants to continue to tell Keller's story in South Africa.

God doesn't need us in South Africa but God is growing Kieren to be a beautifully complex, compassionate and loving child as she grows up here.  Kieren has friends that are every socio-economic background, every race and every type of heart.  Her love knows no bounds and her openness to people astonishes me.  She is happy playing by herself or being the center of attention on stage.  Kieren is getting an excellent education, growing in her gifting of dance, and fostering a deep heart of compassion for her friends who will never know her opportunities.  Something very special is growing in Kieren and we believe South Africa is the place God wants to cultivate it.

Most of all, as we have realized God doesn't need us in South Africa, we have prayed deeply to question if he still wants us here in this time.  In our times of prayer and discernment we believe we have heard God does want us here and that it's not our time to go.  God isn't finished using us in South Africa and more than that, God hasn't finished forming US in South Africa.

Because of this revelation, that God doesn't need us in South Africa but has called us here, we fight.  We fight against the lies that our time is over, that it's someone else's turn, that our kids would be better off somewhere else, that it's time to bring things to a close.  We fight because it's our time to be in South Africa and we want to fulfill God's will for our family here.

We now ask that you would fight with us.  Fight against the schemes of the enemy that are trying to keep us from fulfilling His call here.  Fight with us in prayer that God would protect our family emotionally as we go through this tumultuous and emotional journey.  Fight for God's will simply to be done here in South Africa.

This is why we fight.

When You Try Again...

When your child has autism, things that are small challenges or goals for normal kids and families are anything but normal for yours.  Not only can it be a challenge but autism can make a normal event downright TRAUMATIZING.

At the end of 2014 we made a trip to the USA for our annual time of fundraising and connecting with family.  We had almost a year of therapy and intervention for Keller and his autism diagnosis and we were feeling encouraged at his progress.  However, the trip was disastrous on many levels.  Keller regressed and was anxious and upset much of the trip.  Those would be my feelings on all levels as well - I was anxious and angry.  I felt like my family and friends only were able to see the worst version of Keller and I was constantly filled with stress.  Truly, more than stress I just felt SAD.  Sad about the reality of autism and unsure of our future.

We came back to Africa, regrouped, refocused, and re-goaled.  Keller got back on track and continued to make significant progress.  We began to prepare for our next trip at the end of 2015.  We prepared Keller, we prepared our family and friends, and we prepared our hearts.  There was lots of work, but can I admit that much of the work was needed IN MY HEART.  There was a part of my heart that was terrified at having to take Keller back to America.  I feared he would regress, I feared he would be anxious, I feared it would be difficult, and I feared I would crumble under the weight of it all.  If Keller limped through the entire four weeks I know I would barely made it out alive.

There was no choice in the matter.  We had to make the trip.  We had to take Keller.  We had to DO IT AGAIN.

And we are on the other side of it all.

Can I just say that SO MUCH OF SPECIAL NEEDS is simply doing it again.  We fall and we fail and we HAVE to try again.  We simply must DO IT AGAIN.

I didn't want to travel across the world with my autistic son but I had no choice.  There are other things, however, that are also difficult with Keller and I do have the choice to try them again.  Often I try and often I do not.  Sometimes I am brave and sometimes the fear overcomes and cripples me.  

Our time in the USA at the end of 2015 was an incredible success for Keller.  He loved being with family, understood each transition and challenge, was incredible and calm on the airplanes, and overall just THRIVED in the USA.  

As he succeeded, so did I.  As he triumphed, so did I.

With children, with special needs, with LIFE, so many times we just have to TRY IT AGAIN.  We can't give up.  We can't be defeated.  We can't be overwhelmed.  We have to try again.

Because when you try again, you have a chance to triumph.  

Don't miss your chance.  

TRY AGAIN.

 

the Ministry of Motherhood

I am not the first to have this realization, and it's not even my first time having this awakening, but lately my heart has awakened to the utter profundity of the ministry of motherhood.

I have always known I was called for ministry.

When I was in college, one night at a ministry revival I felt God tell me that my life was going to be devoted to the ministry of telling people about Him.  First I planned on being a worship leader and youth pastor, but that quickly fell through when I learned I couldn't play guitar or sing and needed too many naps for youth.  Then I was going to be a young adults pastor, then focused on small groups, then looked mostly at teaching, then teaching in a college setting, then women's ministry, then ministry to the poor, then then then….

Ministry in my world in a common sense of the word continues to evolve in my life and heart; and seems it will not be a place that I arrive in but rather the journey of serving Jesus and others.

And yet, my most profound and important ministry happens every day in my home.  The two beautiful children God has given me and the incredible husband whom I married are my primary ministry   A ministry that is so easy to not take seriously, so easy to overlook, so easy to ignore, so easy to wish away.  Motherhood is the most exhausting, time consuming, frustrating, and soul-stretching ministry I have ever embarked on.  I never knew what a ministry it really would be and what an incredibly great and precious thing God entrusted me with as a mother.  There are few thank-you's and rewards and many times I feel broken in the blaringly clear mistakes I have made.

But motherhood is the place where I see God the most at work, and find myself most forgiven as I fall short of what is needed of me.  God daily shows me love, life and laughter through my children.  Over and over again I am forgiven by my husband and reminded of the beauty of God as I look into my children's eyes.  The ministry is not something still to come but the full plate of today and it is an utter gift from God.

May we joyfully receive what God has given us today; and for me, today I fully embrace the ministry of motherhood.  Thank you Jesus.

Marriage and Missions

March 23, 2015

Last month as the Prince’s celebrated Valentine’s Day the predictable banter ensued between my husband and I where we tried to get the other person to plan a fancy date so we wouldn’t have to.  I got a babysitter and until hours before we had absolutely no plans for Valentine’s Day.  We eventually went on a (GREAT!) date but it took some mustered energy from us both.

As the Valentine’s weekend went by I watched through social media as friends in various stages of life posted about their Valentine’s day plans.  The single people either were silent or boldly posted pics of Netflix and wine parties.  The newly in love or married couples went on fancy dates and proudly displayed their bleeding love to the world (barf).  The parents with children were also silent OR just posted pictures of their ‘little valentine’ children who now fill their hearts (and time and emotional capacity and every word in their home).  It made me think about Casey and I and what makes it work for us now that we have been married almost THIRTEEN YEARS (GEEZ OLD PEOPLE ALERT!). Oh how different ‘love’ looks in the different seasons of our lives!!

Everyone is different, but for me, marriage is something I always want to enjoy and find life in, not just endure.  I am not happy to have just a life partner or best friend, I also want a lover and someone who pursues my heart.  I want my PRINCE (hah) and I want to be the PRINCESS (Sarah in Hebrew means princess… double barf).  What does this actually look like when you have two small kids and live a life of mission and ministry?? We are full-time missionaries and our lives are engrossed and overwhelmed with people and tasks and needs and voices and things to do.  How do we make it work and how do we keep the love alive?

GREAT QUESTION!

Well the easy answer is that we live by God’s grace EVERY DAY and it isn’t a fairy tale, it’s real life. But it’s honestly better than the fairy tale and worth the work and effort.  At the end of the worst day imaginable or the greatest thing ever, the person I want to most share it with is my husband and I call that a ‘win’ every time.  But marriage and missions means that our relationship is something that we work on just like we work on all the other things in our lives God has called us to.  God has called us to be parents.  God has called us to missions.  God has called us to Africa.  God has called us to love people.  God has called us to serve people.  God has called us to minister to people.  And God has called us to this marriage.  That means we must put in the effort and care and time and focus that we put into all the other things we are called to, maybe even MORE.

In the Prince’s world we take our marriage very seriously because it’s a huge part of our ministry.  The community we live in has a lot of broken families and hurting homes and they often look at us wondering if what we ‘preach’ is even real.  So we have to make sure that it’s real and we work hard on it.  We take dating seriously and spend as much time together as we possibly can because if we aren’t loving each other well then we can never love others well.

We love being together and love our lives together.  But love doesn’t come easy and we know that our love is a combination of a lot of work and God’s miraculous hand.

During a fundraiser event that we had in January a friend came up to us and shouted excitedly, “You guys are just the most perfect couple ever!”  I could only laugh because it was the most ridiculously thing I had ever heard.  I had no words.  Later I found myself thinking more about the ridiculousness and what ever gave her that crazy idea.  We are FAR FAR FAR from perfect but we ARE in love.

That same month I saw this great quote from Lisa Bevere and immediately sent it to Casey.

YES.

Our marriage is FAR from perfect but it is great and it is growing and we treasure one another.  We are on mission together and we are on mission love one another.  We love that mission.

One Year

March 17, 2015

Today is the day.

March 17, 2015 marks one year since our fateful day where we received Keller’s autism diagnosis.

One. Year.

What a difference a year makes.

A year ago we had a little boy who didn’t say any words and mostly communicated through grunts and cries.

A year later we have a little boy who talks and laughs and sings and dances and points and TRULY COMMUNICATES.  Hallelujah.

A year ago we had a little boy who wouldn’t make eye contact and literally screamed when people entered his presence.

A year later we have a boy who has FRIENDS at school, in our community, adults who love him, and new admirers daily.

A year ago we had a little boy who was obsessed with trucks and elephants and nothing more and who would choose those objects above all else.

A year later we have a little boy who still adores trucks and elephants along with cars, all animals, dinosaurs, books, bikes, and almost any other toy you can think of, but MOST enjoys his toys when he can play WITH another person.

A year ago we had a little boy who wouldn’t eat hardly anything and we have battled with food every single day.

A year later we have a little boy who still struggles with food but is trying new food all the time and learning to love family dinner time.

A year ago we had two parents who were overcome with grief and fear by the word ‘autism’ and who felt their dreams and hopes were dying right before them.

A year later we have two parents who are filled with HOPE and VISION for their son and trust in a God who promises the best and abundant life for our little boy.

A year ago we had a diagnosis that rocked our world and threatened everything we knew.

A year later we have a diagnosis that is a gift, a challenge, a tool, and something we embrace so that we can help Keller to be the best little man he can be.  We live with joy, hope, and trust in God’s promises.

WHAT A DIFFERENCE A YEAR CAN MAKE.

God gave me this scripture at the beginning of 2014:

“The LORD is my strength and my song; he has given me victory” – Psalm 118:14

Even in my darkest days God was always my strength and song and truly He has already given us victory.  What a year it has been, one I will never forget.  I will SING from the rooftops of what God has done in this year.

Happy diagnosis day, Keller James Prince.

We love you and love this journey with you.

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Dear Ocean View Vandals...

December 15, 2014

Dear vandals in Ocean View,

This past week, once again, you came into my home uninvited and unwelcome and have taken something that was not yours.  What you took was something given to us, or something we took a long time to purchase, or something important to us.  It doesn’t even matter what it was that you took, as the list of all that has been stolen while living here is too long to even compose.  What you took was just some-THING but it wasn’t yours to take.

I am tired of the stealing.  I am tired of the break-ins.  I am tired of wondering when the next theft will be.  I am tired of looking at people and wondering if it was him or her I am tired.

But I want you to know that even though you took something of mine, I am not the victim.  You are the victim.  My treasures are in heaven and you can never steal my salvation and my joy in Christ.  What is most important in my life is the love of my family, my heart given to Jesus Christ, the laughter that daily fills my home, the peace felt by those who enter my doors when they are invited.  By far the most important things in my home can only be felt but never taken.  I would invite you into my house or help you with whatever is hurting you, but you didn’t ask, you only came to take.

I want to say to you who continues to steal and deceive: stop degrading the value of your life. Stop degrading this community. Stop degrading yourself.  You are gifted and smart and strong and anything is possible in your life.  Stop seeing the world as so small that you must take things from others.  Stop living a life in the shadows.  Stop living a life that isn’t what God created for you.

Community of Ocean View it’s time.  It’s time to speak up.  It’s time to say something when you see something suspicious.  Tell your neighbor when their window is open.  Speak to your children about the value of their lives and how they degrade themselves when they steal.  Pray for the criminals of Ocean View as they have very broken hearts.  We must take back our community.

Pray for Ocean View and God’s Kingdom to come.