Chasing the Impossible

I have a very strong belief that everything happens for a reason and I won’t apologize for it.

I believe with all of my heart the verses that say….Before I formed you in the belly I knew you…I know the plans that I have for you…you were born for such a time as this…..all things work together for good…

I’ve anchored my faith and life in them. So I do firmly believe that every single thing that we go through in life God had it planned before we were even born. That gives me hope that in every situation I can look for the reason, our suffering is not in vain.

April 2018, I believed that God was calling me to open a school for kids with special needs. I shared the idea with a few people that were in my life at that time. People I believe that God strategically placed in my path. They didn’t look at me and say “you’re crazy” they believed in me and encouraged me to go for it.

So I did! Full-speed ahead. I hired a business consultant to help me take the first steps in the right direction. I went to the bank to get the funds and I told my boss that I wouldn’t be returning to my job in August.

May 2018, a week before summer I received a phone call from Karsyn’s doctor. She recommended that I take her to Texas Children’s Hospital. I left school, picked her up from my moms and drove straight to the ER. I didn’t even pack a bag. I never would have dreamed that my girl would be admitted for the next 28 days.

She was diagnosed with a rare autoimmune disease that was attacking her brain. My little girl who was once the life of the party was now trapped inside her own body.

That first hospital admission I was still in “full-speed ahead mode”….while she was sleeping, I was working on my computer. Planning things out for this school that I was determined would still open in August. I knew God was the one who placed this dream in my heart so surely he would allow it to happen.

I had no idea the battle that we were facing. After her third hospital admission that summer I knew God was giving me a firm NO! There would be no school opening for now.

This whole medical mystery ordeal with her was mind-boggling and soul shattering. It crushed parts of me that I can’t even speak. I watched my girl suffer more in a year than most will ever suffer in their life. We listened to doctors tell us that we may need to just accept that this is her new baseline. One doctor told us that the treatment options that we are considering could kill her. I don’t think you could ever understand how hard those decisions are to make unless you’ve been there and done it.

We were at one of the best hospitals in the nation with the most educated doctors in the world and we heard things like…we don’t know if this will work…there isn’t a textbook on how to treat what she has….I’m not sure if it is worth the risk…I can’t answer what I would do if it were my child…the treatments that we are giving could cause cancer….she is writing her own textbook…….the list goes on and on!!!

So what do we do? Do we settle for her to just exist so we can be happy that we at least have her with us? Or do we take the risk and fight to get our girl back?

When you see so much potential in someone and you believe in them so much you are willing to take the risk for them!! She deserved it!!!

I have questioned so many times why God would allow her sickness to happen. I’m sure there are MANY reasons. Some we may never even know.

But I do believe I have realized a few of them.

God was preparing me to do the job he was calling me to do.

KCAcademy opened a year after I wanted it to.

It has been much harder than I dreamed it would be but in three short months I can see how God is using everything that we have gone through for good.

The other day I actually said out loud…”I wish there was a textbook on how to make this work” and in that moment God spoke to my heart and said “there isn’t one!!” If the smartest, most-educated doctors in the world can humble themselves and say “I don’t know the answers. There isn’t a textbook on this but I’m willing to try anything to fight for your girl” …..then you can do the same for the 27 kids I’ve given you!!

Yesterday, I sat across the desk from someone who I highly admire for advise. I love being around people who may not speak what you want to hear but they speak what you need to hear. I left with this realization….

Sometimes we do get caught up in life chasing the impossible. There isn’t going to be textbooks to every situation in life. There isn’t going to be answers to every problem. If we spend our time trying to figure out the impossible then we will lose the beauty of the moments that we are living in today.

I’ve witnessed bravery mixed with humbleness in a way very few people have had the chance to experience. And I think that’s the key to success!!

You don’t have to know all the answers but you must be brave enough to try anyway.

We don’t always get to know what the outcome will be! It could be the most amazing miracle or it could be unimaginable heartbreak.

18 months after Karsyn’s diagnosis we are so thankful that we didn’t let the fear of the unknown hold us back. After so many hospital admissions and treatments that I’ve lost count, our girl is completely back to her life -loving, sunshiny self!! God is good and SO faithful! We got our miracle!!

As for KCA….I have no idea what the outcome is going to be. I do know God has surrounded me with a group of people who believe in this as much as I do. We don’t pretend to have all of the answers but we are willing to try anything to make sure these 27 kids reach their highest potential.

Life doesn’t have to be perfect to be beautiful!!

Stop chasing the impossible and focus on the possible!! Make a difference where you can!

3 Things I Learned from the Hospital Room

Karsyn was recently readmitted for the 4th time this summer at Texas Children’s Hospital.

In May she was diagnosed with Hashimoto Encephalopathy, a rare brain disease.

The reason for this latest admission is she lost the use of her bladder and had to be catheterized.

I’m going to be honest I was feeling a little sorry for ourselves. I hated seeing that bag hang on her bed and we hadn’t left the room in 4 days. On Sunday a friend stopped by for a visit. Her short time with us completely changed my perspective. She was more knowledgeable on this new season in our lives and shed some light on our current circumstances without really even trying. I guess when you’ve seen so much worse you can offer some hope and perspective. Even if Karsyn did have to keep this with her for a short time, this isn’t the end of the world!! She picked up Karsyn’s bag, held her hand and they went for a walk around the unit. She didn’t realize the impact our conversation and that 5 minute walk had on me!!

The power of perspective, positivity and knowing the truth can change lives.

We spent the next 2 weeks there and the whole time my heart and mind thought about the power of those three things.

This blog started out as a running blog and so it’s fitting to “go there”.

When I first started running the thought of running 3.1 miles seemed “crazy”. I couldn’t run .1 miles. And then I ran 13.1 miles and 3.1 miles didn’t seem as bad.

I did it, I survived and so I know I can do it again.

Karsyn’s first hospital stay was 25 days. When we got to day 10 and still had no end in sight my mind was blown. This hospital stay was 15 days and it didn’t seem as bad.

We did it, we survived and so I knew we could do it again.

I think in a way that’s how God grows our faith!! We are put into circumstances that our mind thinks is “crazy” but the things we “know” keeps us going!!

We have to change our perspective, see the positive and anchor our hearts in what we know is the truth.

It’s easy to focus on what’s not right, what’s not fair but that won’t change our circumstances.

I’m going to wake up tomorrow and Karsyn will still have Down Syndrome. And if that’s not “fair” enough she’s going to still be fighting a rare brain disease on top of that.

The words that she has worked so many years to say, she will have to work even harder!

We really don’t know what her future will hold. The brain disease that took away her bladder function could easily take away her lung function. I could live a life of fear of what I don’t know but I choose to live in the peace of what I do know.

I know God is good and He wouldn’t allow this if He didn’t have a purpose for our pain.

3 Things I learned from Room 1009…

Keep my perspective right...this life is so short, eternity is really all that matters.

Whereas ye know not what shall be on the morrow. For what is your life? It is even a vapour, that appeareth for a little time, and then vanisheth away. James 4:14

Stay positive….things could always be worse.

Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself. Matthew 6:34

Focus on the truth...God loves us and he promised to work ALL things for good!!

And we know that all things work together for good to them that love God, to them who are the called according to his purpose. Romans 8:28

I love this girl and I’m SO thankful for everything her little life has taught me!!

Keep leaving your mark on this world!! It’s definitely a better place with you in it!!!

Angels Among Us: This world needs more people like Alex and Karsyn

This week has been a very hard week. We lost a special young man, Alex Foreman.
Alex’s Mom is the Principal of Hope Christian, the school that Karsyn attends and where I work.
Regretfully, I didn’t know Alex as well as I wish I did. I had the opportunity to talk to Alex on several occasions. He visited our school frequently. On any given day, I could see him working around the school or sitting in the chair in front of his mom’s desk.
The Tuesday night before Alex passed away he was helping in the concession stand at our basketball game. After the game was over, Alex was busy cleaning up. I went in the kitchen and offered to help but he said “no ma’am, I got it!” I didn’t know that would be the last chance I would ever have to talk to Alex. I wish now that I would have insisted on helping him and enjoyed a conversation.

I only know Alex because God blessed me with a special girl of my own.

Hope Christian was never in my plan for her. If I’m being honest it was a last resort.  For reasons out of my control our path led us to Hope Christian, where Linda and Alex Foreman would become a part of our life.
The Bible verse in Proverbs where it says, “our steps are ordered by God” , is so true. God continues to amaze me how he orchestrates our life. He puts us where we need to be at the exact time we need to be there.

I don’t love Karsyn any more than I love my other 5 children but there is something different that’s very hard to explain.

I really don’t know if every parent of a “special” child feels the same as I do but from the first time I sat down in Linda’s office and heard stories about Alex, I could tell her heart felt the same as mine.

If we were having a meeting in her office, it didn’t matter what the conversation was about, if her phone rang and it was Alex….our conversation could wait.

Every time he walked in I could see a light in her eye and hear a sweet tone in her voice that only he could produce.

I respected her for that….I never told her but I tucked it away in my heart.
I knew that feeling of pride and unconditional love that she felt every time he entered the room. His presence lit up a room with smiles!!

Having a child of my own like Alex (to some degree) I know the constant and ever present worry and feeling that “she needs me!!!”

I remember dropping her off at Prek for the first time when she was 4 years old. That scared and lonely feeling was almost unbearable. What if she needs me??

Her sweet teacher was so understanding and loved my girl so much.
Karsyn didn’t really need anymore love, but her Mom needed it.

When I walk her into class now, every morning her teacher stops to welcome her and hug her. Karsyn doesn’t need that either but her mom sure does. I need to know that if my girl needs me and I can’t be there then she’s with someone who loves her like I do!! 

But Something changed in me this week. I realized a profound truth..Karsyn really doesn’t need me!! The truth is “I need her!!”

The thought of living without that precious girl is inconceivable. Her presence in my life has changed me to the very core. She has changed so many lives for the better!!

I have no doubt that she was sent here on a God mission!!

The passing of sweet Alex has once again changed my focus from here to there.

This life can be so short!

I know the promise of Heaven is the only thing giving his sweet Mom the strength to go on without him. Every moment I see her, smiling through the tears….I tuck it away in my heart. I’m amazed at the power of prayer and the grace of God. Alex and God continues to carry her.

We get so preoccupied with this life and what we want to accomplish, what we want them to accomplish that we forget why we are all really here.

It’s not to make a name for ourselves on this Earth, it’s to take as many people with us to Heaven as we possibly can.

Karsyn has expanded our reach far beyond what I could have ever imagined.

She can reach people that I could have never reached without her and the same could be said about Alex.

I stood in amazement at his visitation as the crowd wrapped around the church, waiting to say their goodbyes to him.

He wasn’t your typical 18 year old kid. There was something incredibly special about this boy.

Call me crazy but I believe they are Angels among us.

Angels sent to teach us the true purpose of life.

Angels sent to unite different people of all races and religions.

Angels sent to remind us that this life isn’t all that matters.

The only thing that matters is that we’ve received the greatest gift ever given to mankind.

John 3:16
For God so loved the world that he gave his only begotten son. That whosever believeth in Him should not perish but have everlasting life.

Karsyn and Alex both continue to teach us that differences don’t really matter.

God doesn’t care what religion we are affiliated with, how successful we are or what we can offer him.
He simply wants us to come to the place where we understand, this life is all about Him!! We can do nothing to earn his love or his salvation. We just come to Him as we are and trust what he did for us on the cross is enough.  We accept his gift!

The pureness and innocence of kids like Karsyn and Alex makes God’s love so easy to understand.

They just love, they don’t judge. They love unconditionally and just as you are.
It’s a beautiful legacy that leaves everyone they meet feeling the love of God by simply knowing them. They love like God loves!!

This world doesn’t need more people like you and me….this world needs more people like Alex and Karsyn!!

Karsyn the Kindergarten “Drop Out”

I told my oldest son awhile back that I was going to write a children’s book about “Karsyn goes to Pre-K”. A book that can be read to preschoolers explaining Down Syndrome and showing that kids with DS are really not that different…..to which he replied, “what’s going to be your sequel? Karsyn drops out of Kindergarten?”

We both laughed because that was a true statement. She didn’t make it past December in Kindergarten. 

Another time in my life when my plans went nothing like how I wanted them to go. 
I choose to believe that God knew my plans were going to fail. He was there. 

He doesn’t always save us from the heartache but He is always faithful to pick us up, dust us off and send us on another path. He promised to work all things for our good. 

I don’t think you ever forget “traumatic” events in your life. The ones that shake you to the core. From time to time you replay them in your head and you still feel the pain in your heart. 

The day Karsyn was born will forever be a part of who I am. I kind of wish I would get to the place where I’d forget. I wish even with her diagnosis that her birth story would have just been a celebration. But the reality is it hurt then and it still hurts now. 
The sting of the reality that my baby is “different”. The moment that my doctor gathered us around my hospital bed and in the kindest way possible broke the news to us. I can still feel the pounding of my heart and the tears swelling in my eyes. 

The grief and fear were overwhelming. 

But over time the grief subsided and we were overwhelmed with joy instead. I love her to pieces. Anyone that has ever met us would never question that. 

Everyday you accept that the things she can’t do pale in comparison to the things she can do. She taught us to stop and enjoy the little things. To look for the miracles in everyday.

We made it through the fear of the newborn days. We waited patiently for her to build the muscle needed to hold her little head up. We watched her struggle to rollover. I screamed the first time she sat up, she did a full split and pushed her way up. She eventually crawled, then walked and now she’s running. 
Believe it or not I survived dropping her off to school as a little 4 year old baby to a total stranger I had only met a few times. She couldn’t say anything, she was still in diapers and couldn’t even walk the whole way to the cafeteria and back without tiring out. (Or just wanting to be held)
That precious teacher who loved her like her own will always hold a special place in my heart. 

Karsyn gave us the courage we needed. She thrived and learned so much. 

I had high hopes that school was going to be a great and exciting journey for her. She was going to break the stereotypes! She was going to be the one who changed the way people viewed Down Syndrome. 
We were blessed with a great school and everyone loved her. 

I think I went into the year with the same expectations that I walked into the hospital with that day.

But things didn’t go like I had planned. 

Maybe my high expectations were a bit unfair to everyone including Karsyn. 

After a few months, I had another meeting that changed me. This time it was gathered around a little desk instead of a hospital bed. My heart started pounding and I could feel the tears swelling before they even said a word. I’d been here before and I knew what was coming. It wasn’t my Doctor pointing out her almond shaped eyes, her “thick” neck and the crease across her palm instead it was a teacher pointing out similar facts. Karsyn is different. She was not keeping up with her class. I know it broke their hearts as much as it did mine. I wish I could say I was prepared to accept the news this time around but it didn’t get any easier. Just like the day she was born the rest of that meeting was kind of a blur. I got stuck in that dark place of grief. 

I knew they were right. Academically she wasn’t anywhere close to the other kids. I tried to agree with them but my heart said just give her a chance. 

I do not doubt that they loved her and wanted what was best for her. I wanted the same thing!! 

I just wasn’t ready to accept where she was ultimately headed. 

Someone asked me, “what do you want for Karsyn when it comes to school?” I guess the true and honest answer is…I want her to be “like every other kid”. The same thing I wanted for her the day she was born. I want her to run and play with no limitations. I want her to sit and learn with her friends. I want her to express her wants, desires and feelings. I want her to be fully included. 

I know there is not an easy answer and maybe what I’m searching for doesn’t even exist. I just know how her being in my life has changed me. I’ve seen her change my kids without them even realizing it. I watched her in a reverse mainstream class for two years leave an impression on the kids around her. She was teaching them compassion, empathy and acceptance. I know if you asked her teacher she would stand up and say she added way more to her class than she ever took away! 
I really never cared about academics. I want her to learn to read and write but that has never been my focus. I never wanted it to be but I found out quickly that academics is all that people see on paper. 
Unfortunately, it defines who you are. 

It doesn’t show you the amazing little girl I see. It doesn’t let you see everything that she has to offer that can’t be graded. 

It’s not the school’s fault. It’s the society we live in. We live in a broken world with a broken system. We all look for what people have to offer on paper. Grades, behavior, awards and achievements.  It’s hard to look beyond the surface and see what’s really there! 

I don’t know where Karsyn’s place is for her educational journey. I could have this all wrong. I am very new to this! 

Sometimes reality is hard and it takes awhile to come to terms with it. 

Eventually I will get there..

I’ve come a long way in 6 1/2 years and I’m sure in another 6 1/2 years I’ll look back and I’ll be proud at how far we’ve come. 
I’ll continue to be forever grateful to the people that God puts in our path with understanding hearts and patience as we grow. 
Karsyn was not given the “best” mom out there with all the answers and the mom who always makes the right decisions.  
Does that kind of Mom really exist? 

We are all just trying to do the best we can driven by a fierce love to protect and provide the best things for our babies. 

What I’ve learned is Special Education is complicated! I take so much for granted with my “typical” kids. 

The next time you see a student with special needs cross the stage and receive their diploma, stand to your feet and applaud them! They overcame many obstacles to achieve their goal!! And then go find their sweet Mom and give her a BIG hug!! Because she is my hero!! 

Karsyn  will continue to teach me like she always has! 

She’ll find her place and she’ll bless everyone with her vibrant spirit. 

The girl really is amazing! 

Update..Karsyn is currently enrolled in school!! She didn’t stay a “drop out”! 😊 

The Best is yet to come….

Motherhood on Steroids: Special Needs Parenting

My Brock has asthma. When his asthma starts to flare up one of the first things we do is start him on a round of steroids. It turns this typically laid back kid into an uncontrollable mess. I know that meltdowns are inevitable!!

That’s exactly what it feels like to be a mom of a child with special needs.

You carry the same burden as any other mom. You want your child to be safe, secure and loved at all cost but throw in a disability and that is all magnified by 10,000.

Most days I spend my time trying to convince myself and every one around me that I am really not crazy.

But truth is, Karsyn does make me crazy!!

I am crazy about her!! 

For the first four years of her life she was with me every second. I sat in on every therapy session she had (and it was a lot).
I watched her every move and celebrated every single milestone that she made along the way!

So when it came time to send that precious little girl off to school it was heart wrenching and terrifying.

At 4 years old she was so little and fragile to me.
It is still a huge miracle that I let her go. She was a baby, still in diapers with very little communication skills. My list of fears were a mile long.

I met with the principal and talked about how this was going to work. I told him all of my worries and concerns and I’ll never forget what he said to me…”You’re telling me everything that concerns you,  but this has nothing to do with Karsyn’s ability to perform well at school. This is about you. Tell me why she can’t do it?” I was speechless because deep down I knew there is nothing that the kid can’t do! She is the most determined little girl I have ever met!!

He was right and I knew it. She can do this.

So we continued with the process.

God knew the teacher that she needed. The teacher that I needed. I met with her and I had a peace that Karsyn would be ok! There was something about her. I felt a genuine love that she had for my girl. I felt like she would move mountains to protect her and that’s what I needed. I needed for her to be safe and loved! She also made me feel like I was normal even with my suitcase of crazy that I was carrying. She wasn’t afraid of it. She even helped me carry it and over the next two years she helped me unpack a little bit of it.
There is so much more to a good teacher than teaching abc’s and 123’s. In Karsyns situation it was just as important the way her teacher treated me as it was the way she taught Karsyn. Moms can be hard to deal with but when you add “special needs” to a mom’s identity you are dealing with some very strong emotions. She could have very easily written me off or dealt with me as little as possible but she knew if Karsyn was going to succeed then I was going to have to trust her in every area. I will be forever grateful to Holly Edwards for the way she loved us both!! Karsyn’s new teacher should thank her because I really am a lot better than the first day I walked into school.

Karsyn thrived in her class. The little baby that I dropped off in diapers would grow so much. The little girl that needed to be carried halfway to the cafeteria because she tired out, the girl that couldn’t carry her tray, couldn’t feed herself, couldn’t climb all over the playground equipment learned all of these things and so much more! By the end of her second year you really couldn’t tell there was any difference between her and the kid next to her.

On World Down Syndrome day her teacher tried explaining to the kids a little bit about DS. I’ll never forget what she shared with me…she asked the kids, “What makes Karsyn different??”  The only thing they could come up with is the color of her hair bow. YES!!! My sweet girl! You just taught everyone around you to look past the differences and see the person!!! That’s what inclusion is all about. That should be what life is all about!!

She rocked Pre-K!!
There’s no holding this girl back. She is ready for the next step…Big girl Kindergarten.

I knew the transition would be hard. Over the summer I would drive by the school and have to fight back tears.

But Karsyn hasn’t missed a beat. The kid amazes me. She’s so confident and ready to take on the world. If only I could be as brave as her!! I wake up every single night thinking about her day. Some nights I can’t stop the tears. I don’t get much information from her but I know she’s happy. And I have to trust that she will let me know when she’s not. I love my friend’s advice…Just breathe and let Karsyn lead!!
She has been blessed with great teachers this year. I know they will love her and help her grow even more.

Do I have an overwhelming selfish desire to keep her home with me? YES!!

But this isn’t about me.

She needs this!
The world needs her sweet smiling face. She is the brightest of sunshines.
She has so much to accomplish and so many lives to change along the way. (Especially mine)
Psalms 139:14
I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; andthat my soul knoweth right well.

I couldn’t see the forest for the trees

I couldn’t see the forest for the trees

It’s so easy to focus only on small details and fail to understand larger plans or principles.

This school year is flying by and with that comes the unsettled feeling in my heart of what’s next for my sweet Karsyn.

The past year and a half she has been with the same teacher. She loves my girl and sees the best in her. She will always have a special place in my heart!! But Karsyn can’t stay there forever and it’s almost time to make decisions on what’s next.

 

Last night I pulled out a stack of books that my friend had given me about understanding IEP’s. I am clueless on this subject and I figured I better start educating myself a little bit. Tara and I exchanged a few texts about some things and in one she said……I couldn’t see the forest for the trees.

I didn’t think too much of it last night but today it hit home.

I kept Brock and Karsyn home from school today. Brock is sick with his asthma and Karsyn…well, there’s not a great reason why she stayed home.
Karsyn was the first one awake this morning and immediately started asking to eat. So, I got up and went into the kitchen to cook some eggs.  A few minutes later Brock woke up and his coughing started back.
I heard Karsyn dragging something and turned around to see what she had. She had gone into the living room, got Brock’s breathing machine and was bringing it to him.

I was amazed and impressed with how incredibly smart that girl is. I snapped a picture (because I take pictures of everything the kid does lol) and sent it to a friend, bragging on her. My friends response was….I love it!! Empathy for others!!!!!…..

Talk about not seeing the forest for the trees.

The fact that she just showed an enormous amount of compassion for her brother never entered my mind.  I was just focused on the fact that she’s smart!! I want the world to see that she really does understand everything that’s going on around her.  I don’t want them to look at her and see her diagnosis and assume that she can’t learn or understand things. She most certainly CAN!!

I want the world to see that about all of my kids.  That they have great potential to be anything that they want to be!!

BUT when I read my friends response to Karsyn….Empathy for others!!! I stared at the text with tears in my eyes.  She didn’t praise her for her smarts. She praised her for her compassion.  That is what leaves a lasting impression on people’s hearts.

I got so caught up in the details that I didn’t see the bigger picture.

God has a great plan and purpose for my sweet girl!!

I will do my part to ensure that she gets the best education possible. I will fight the battles for her that need to be fought.
But I have no doubt that God will continue to take great care of her.

At the end of the day…the purpose of Karsyn’s life is not to show the world how smart she is and what all she can accomplish. The purpose of her life is to show God’s love and compassion to everyone she meets.  I feel and I see the joy she brings to a room when she walks in.  It is Heavenly!!

I pray I never get so focused on the things that I want for her that I miss seeing the things that God has planned for her.

His ways are far better than our own.

I’m blessed to be this sweet girl’s Mom!!

Abortion should NEVER be an Option

October is Down Syndrome Awareness Month. The most heart wrenching statistic when it comes to babies with Down Syndrome is the abortion rate.  About 92% of pregnancies in Europe with a diagnosis of Down syndrome are terminated. In the United States, termination rates are around 67%, but this varies significantly depending upon the population evaluated.

The perception of what it will be like to raise a child with Down Syndrome has to be changed!!! 

I wish someone would have walked in my room with balloons and confetti the day she was born and said, “Congrats on the birth of an amazing little girl!!” She will take you to places you have never dreamed, introduce you to people you never would have met, and teach you things only few get to learn!!

  

My girl is only 5 years old and I stand in amazement at the things she has accomplished and the lives she has touched along the way!!

Anyone who knows us knows that we have been blessed to be a part of the awesome organization Ainsley’s Angels. Karsyn participates in races all over!! If you have a child with a disability, I urge you to contact them!! They have added so many blessings to our life!!

This last weekend was the Ethel Precht Breast Cancer Walk. Karsyn’s Grandmother was recently diagnosed with breast cancer and thanks to Ainsley’s Angels she was able to participate alongside of us! This race was close to our hearts.

As we were walking up to the race, the Principal from Karsyn’s school came over to speak to her!! We are blessed to be part of a school where they not only know her name but truly care about her! I don’t take that for granted.

A few minutes later someone tapped me on the shoulder. It was Karsyn’s first PT. She started seeing Karsyn when she was 3 months old, but we haven’t seen her in years. I was so touched that she went out of her way to come say Hello to Karsyn.

While we were waiting to start the race another person came over and put her arm around me. I turned to see a young St. Louis Saints Cheerleader! She came over to say Hello to Karsyn. She is the daughter of Karsyn’s first Speech Therapist.

I left that race with a renewed awareness of how awesome it is to have a daughter with Down Syndrome.

Yes, they told me that Karsyn would be delayed and would need extra help in certain areas. She would need OT, PT and speech. She would be part of a Special Education program at her school. She would be part of “Special” organizations that would cater to her needs.

As a new Mom that is all pretty depressing!!

I wish they would have told me that because she will need these things, God is about to bless your life in an AMAZING way.

God will send Karsyn the very best therapists!! Not only will they be exactly who Karsyn needs but they will also be exactly who you need!!

Karsyn will need a Special Education teacher to help her learn but don’t worry that teacher will love her more than you ever thought possible and she will be there for you even on your craziest days!!

Karsyn will be a part of some “special” organizations, but this will be the greatest journey of your life!! You will meet strangers who will become like family! You will travel to places you never would have gone, and have the privilege of meeting some incredible people!!

There is no need to be depressed!!!

Down Syndrome is the coolest, most exciting journey you have ever been on!

That little girl is going to change everything about you. She will teach you to never give up, to try new things, to love people for who they are, to never settle for less than the best, to keep a positive outlook….things could always be worse, to celebrate every accomplishment along the way whether big or small. You were born to change lives-don’t ever waste that!   It’s ok to fail but always keep trying!!

I really don’t have the time or space to write everything that she has taught me!!

Did I mention she is only 5??

  

If you are a new mom and you have been blessed with this same amazing gift!  Embrace it!!  Don’t you dare have a negative outlook on the future for you and your sweet baby!! Love that baby with every fiber that’s in you!

He or She is the single greatest gift you will ever receive!!

Happy 5th Birthday Karsyn!!! You Keep us Running!!

It’s hard to believe that my baby girl is 5 years old today!!

It seems every year, on her birthday, my heart and mind go back to the day she was born. I’m not sure if over the years this will stop, I kind of  hope it doesn’t. I hope I’m always reminded of where we all started and how far we have come!

I had no idea how much joy and laughter this little girl would bring into our lives!!

Karsyn is the definition of FUN!!
She has had a very busy year!
Every year that passes I think, there’s no way God can top what He did for us this year!! But HE does!!! I’m amazed!! I’m so proud of this amazing little girl!!

She started school in August!! Let me be honest…I knew deep down that school would be good for her but I did not want to let her go!!! I wanted to be selfish and keep her home with me! At least not send her everyday!!! The thought of spending days without that little sunshine around did not sound like a good idea to me!!! Plus, I have a little issue with letting go of control of her. She’s not my first kid and to be honest I used to make fun of moms like me! You know those Moms who think their kids can’t function without them around!!! Yeah, well Karsyn turned me into one of those Moms!! I’m sorry for judging them now!!!

Sometimes you just need a little push to do what is best!!! God put two amazing people in our path this year.

Holly Gaudet, Karsyn’s Speech Therapist and Holly Edwards, Karsyn’s Special Ed Teacher. They both encouraged me to let Karsyn give it a try!! They said, We really think she will do great! And she did!!!! I can’t really tell you what all she has learned as far as her ABC’s and 1 2 3’s. (She is still non verbal) I’m sure it is more than I realize but what she has learned can’t be tested on paper!! School was great for her!!! I am amazed at how much she has grown!! We were blessed that she was surrounded by people who loved her and wanted her to succeed!! God bless her teacher for loving her SO much and for putting up with her crazy mama!!! I’m not sure she fully understood how hard it was for me to let her go but I don’t think anyone else could have met our needs like she did this year!! I know her teacher isn’t supposed to take the place of her mom, but she made sure that Karsyn was safe and loved in my absence!! I could never thank her enough for that!! She will always hold a special place in my heart!!!

Karsyn started Gymnastics, She was blessed with two very special girls who spent their afternoons helping her learn their sport!

Her picture was on the Jumbotron in Times Square,

She plays Buddy Ball,

she ran a 1/2 marathon (without her mom or dad)

She became a Triathlete!

She “graduated” from Pre-K!

And thanks to Ainsley’s Angels she was able to go back to Holland, MA for another race with Dick and Rick Hoyt and our Ainsley’s Angels family from around the U.S.

While we were there we were able to visit NYC to show her where her picture was shown (not that she really cared haha)

She keeps us RUNNING!!!

I’ve learned so much from living with this little girl for the past five years.

Dream BIG, never put limits on yourself, always keep your heart open for unexpected blessings, try hard not to judge people for differences (let’s be honest we all fail at that from time to time) and whatever you do, DON’T QUIT!!!!

I’m so thankful for God blessing us with such a gift!!! I can’t wait to see what she accomplishes this year!!!!

“Don’t tell me the sky’s the limit when there are footprints on the moon”

Keeping dreaming BIG sweet girl!!! We all love you SO much!!

Everyone You Meet In Life Has A Story

I just had an amazing weekend doing things I NEVER thought I would be doing. I think sometimes it’s good to share your story. So I’m going to try and make a very long story short, and tell you what led me to the place I am at today.

It’s been almost 5 years, but seems like just yesterday. There comes a time in your life when you get tired of just doing the same thing over and over. You want your life to have a significant purpose. Matt and I were both at that place. He was on a Missions trip to the Dominican Republic helping to build a church and I was home with our five kids and one on the way. I remember lying in bed with this burning desire in my heart, begging God to send us somewhere to do something big for Him. Matt came home with a love and desire for God that I had never seen before. We both knew that God was calling us to DO something. So we surrendered to Him, we put our newly built house up for sale and planned to leave for missionary training school two months after our 6th baby was to be born. We had plans to do something GREAT for God!! Surely this is what God wanted for us, BUT God had other plans. Instead of giving us the baby that would fit into our plans, He gave us Karsyn. He took our world and all the plans we made and turned them upside down. Those were some very dark days. We were trying to sort out what this meant for our family.  We sold our house a few months after Karsyn was born. We were still in the dark as to what God was up to!! I’m not going to tell you that my faith was strong and I walked with God every step of the way. I cried, I questioned, and I doubted everything!!! I even became bitter at times that He wasn’t going along with our plans.

Now I have a baby with a disability and my beautiful home is gone. Not exactly the way I had dreamed it!! Karsyn would need lots of therapy!!! I was overwhelmed and a little obsessed with trying to get every kind of therapy I thought she needed. She was seeing OT, PT and Speech through Early Steps, and I was taking her to private OT and PT. It was very expensive and exhausting!!! When you are handed a baby with a diagnosis you know nothing about you just want to make sure you are doing everything you can to give her what she needs to succeed!! The first few years were tough emotionally, physically and financially.

 

God has sent SO many people to us. Therapists and Teachers who choose to love us both!! I can totally understand why they would love my sweet girl, but why they love her crazy Mama too is definitely a God thing!! Just like all the therapists and teachers before God continues to faithfully send us someone to love us both!!! Her teacher has been VERY patient with me and has fallen in love with my girl!!!!

 

I love to look back and see God’s hand in our life.

 

One year after we sold our house the people we sold it to, sold it back to us!! Sounds crazy???!! It’s true!!! How often does that happen?? Definitely a God thing!!

 

Out of nowhere, God put a desire to Run in my heart. I had never ran a day in my life!!! I was athletic and played sports but running was not one of the sports I loved!!

 

I knew Michelle, Karysn’s Speech Therapist, was a runner so one day I mentioned to her I was thinking about running a 5K. From that simple conversation God opened up a whole new world. Every day we are both AMAZED at what has come of it.

 

First, she has become one of the dearest friends in my life. She lit a fire that had gone out in me. I remember one of our first runs she said God wants you to do this. I called Matt on my way home and told him. He pretty much thought I was crazy.

 

Two years later….He does not think I’m crazy anymore!!! Only God could have taken that desire and turned it into what it has become!!

 

We were introduced to Ainsley’s Angels a little over a year ago. What an awesome ministry of lending your legs to those in need. I can’t count the people we have been able to share God’s love with because of running.

 

God put another desire in my heart….Triathlons!! My plan was for Karysn and I to do them together!!! I contacted AA and asked if this would be possible. In true AA fashion they said of course and made it happen. They purchased all the equipment! We were all set!! All we had to do was wait for the Tri season to start!!

 

In the meantime they sent us on an unforgettable trip to Holland, MA. It was in Holland where our friendship began with the Warner family. Lanie Warner touched my heart and left a lasting impression on me.

 

So it’s time for Karysn and I to start training for our first triathlon together!! I was pumped!!! BUT once again God looked at our plans and laughed!!! Karsyn who loved the water all of the sudden wants nothing to do with it!! NOTHING!!! So, what do we do? AA already bought all this equipment we can’t just forget about it!! God reminded me of that sweet girl I met in Holland!! So I sent her Mom a message asking if she would be interested in taking Karsyn’s place?? I think she was a little hesitant but decided to give it a try!! It was a HUGE success!!! Lanie rocked it!!!

 

So, is that it?? We just do that one Tri and call it a day??? No way!! AA willingly expanded their organization and added a Tri division. I have no idea why they chose me but I am blessed to be the Tri coordinator. In just four months we have grown from one captain to four in our AASWLA chapter. Our South Texas chapter now has a Tri team. ( I’d like to think we inspired that!!) AND our Mississippi Chapter will soon join us!! (I hope anyway haha)

 

God works in mysterious ways!!!

 

Karsyn didn’t mess up the plan. She is THE PLAN!!!! Wow, God sure writes a better story than I could ever write on my own!!! What a gift!!!

 

God can take ordinary people and do extraordinary things!!!

 

I could not have planned this!!! His ways are higher than ours!!

 

I can’t wait to see what else He has in store!! This is an incredible journey!!!!!!

 

 

My Trip to Holland

I guess you could say that our trip to Holland started four years ago today, the day Karsyn Angel Lynn Caldwell was born! We started off that day with excitement! We knew this would be our last trip so we were taking it all in! I remember walking hand in hand down the long hall of labor and delivery; we had taken this walk five times before! We were so blessed to get to experience the joy of bringing a new life into this world 6 times over! The thought that this day would be any different never entered our minds, but the day did not go as we had planned. Shortly after Karsyn was born the doctor delivered the news that she had Down Syndrome; the first thing we did as a family was pray.

 

 

My Dad prayed a beautiful prayer thanking God for our new beautiful baby girl! There’s no doubt that his presence was there with us! We weren’t angry that our trip had taken a detour!   Scared, confused, and heartbroken would best describe our feelings! We knew that God had a plan for our family! Jeremiah 29:11 “For I know the thoughts that I think toward you, saith the Lord, thoughts of peace, and not of evil, to give you an expected end.”

 

When Karsyn was a year old my friend, Melanie, gave me a book to read “Roadmap to Holland” and the essay “Welcome to Holland” by Emily Perl Kingsley (http://www.our-kids.org/archives/Holland.html)
“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.” c1987 by Emily Perl Kingsley. All rights reserved

Last year, we were introduced to an awesome organization, Ainsley’s Angels (Ainsleysangels.org). They have become a part of our family. We have participated in many local races with them! Thanks to this organization I not only get to run, but I get to run with my sweet girl!!! A few weeks ago, our new family, Ainsley’s Angels sent us on another trip, a trip to Holland!!!

Let me tell you about my recent trip to Holland!

This was a trip of a lifetime, I know that it’s one of those trips that I’ll look back on and say, “Did we really get to do that?” We were given the opportunity to go to Dick and Rick Hoyt’s hometown of Holland, Massachusetts and run a 5K alongside 100 other assisted athletes. The atmosphere of this race cannot be matched anywhere. From the start of the race until I crossed the finish line, I could not stop smiling! I’m still smiling! It was incredible!

 

Can you imagine running alongside so many awesome athletes?

 One Captain left a lasting impression on me. He worked so hard to get up those hills! His hard work and determination changed me! You are my hero Captain Andrew!

 

Spending the weekend with such amazing people was life changing. Dick and Rick Hoyt, Rooster, Lori and Ainsley Rossiter are as special as they come! It is one thing to make a dream for your child a reality but it’s another thing to choose to share that dream with others! Thank you for breaking down the barriers and allowing us to join you along the way!

I left Holland a better person than when I arrived! Holland is a beautiful place to visit! The rolling hills remind me of the Holland where most of us live! We have our ups and downs but I wouldn’t trade this beautiful journey! My new friend Tara said “I will learn to love it here”. She has been here for much longer than I have and I know she is right! I’ve only been here for four years and my heart is overflowing!

Thank you to the Hoyts, Rossiters, and Ainsley’s Angels for our unforgettable trip to Holland!

Thank you to my beautiful birthday girl Karsyn Angel Lynn Caldwell!

You have changed me more in the past four years than my 30 years before that! You have given me a heart to love people who are different! You have given me the courage to leave my comfort zone behind! You have taught me that it’s okay to try and fail but I must keep trying!

Your smile, your hugs, your kisses and the beautiful way you say Mama melts my heart and brightens my day! You spread sunshine wherever you go! (Mrs. Michelle has nicknamed you “Sunshine” and I love it!) You are SUNSHINE for so many people! I’m so blessed that God chose me to be your Mom! Thank you for taking me on such a fun journey!