In September 2002, Kelly Clarkson had won American Idol. I was a faithful watcher and voter...probably from my pink Motorola Razr. Ha. Her debut song was, "A Moment Like This". I was pregnant with Cody. He was due on Christmas Day, 2002.
However, by this point, we were not entirely sure what life beyond Christmas Day 2002 would look like. There were many uncertainties. What had started as an anxious and exciting moment (a funny one at that) to find out if were having a boy or a girl, turned into a moment engraved into my memory so deeply that amnesia couldn't erase it. We began to have ultrasounds via satellite with Arkansas Children's Hospital. We had an amniocentesis. We learned he would have bilateral clubfeet. There were questions regarding fluid on his brain and ventricles in his heart. There were moments when doctors let us know they were not sure if Cody would live to term and if he did live to term, if he would live beyond infancy.
There was a moment where abortion was discussed.
There was a moment where Derrick and his dad went and cut wood from sun up until sun down just to try and process all of these moments.
There were many moments where I shut off that pink Motorola Razr, sobbed and drove dirt roads until my gas light came on so I could process these moments.
And in those moments, there was a LOT of arguing and bartering with God. Surrendering.
But, also in those moments, some incredible bonds were formed with our doctors, nurses, and radiologists.
Our tribe began.
My wise and kind OB spoke to me on the phone during an appointment he could not attend and asked me such an important question that I think about often: "What are you going to do with this information?" I told him I just wanted to be prepared so I could take the very best care of him that I could.
Fast forward to December 17th, 2002 and Cody Ryan Jensen made a grand entrance at Willow Creek Women's Hospital at 9:04pm weighing 8 pounds and 4 ounces. The fluid around his brain was miraculously gone. His heart had a murmur, but otherwise, perfect. We had a plan for his feet. We had a God given miracle.
And then in a moment, things changed. He needed to be transported to the NICU, which at this point was at Northwest Medical Center in Springdale, where he would later be diagnosed with a severe case of Hirschsprung's Disease and eventually MED13L. Neither had a single, solitary thing to do with fluid on the brain or his heart or his feet. It was something completely different and could not be detected by amnio. I was getting a much needed shower when they brought my baby into the room in a plastic box for me to say my goodbyes as they transported him to Springdale via ambulance.
That moment.
That was the beginning of many "We will take good care of him, Mom" moments as they would wheel my baby away.
And now, tomorrow morning I will hear the University of Arkansas say, "We will take good care of him, Mom."
Cody stayed in the NICU until New Year's Eve. His first Christmas. He endured his first of eleven surgeries in that time...six of which were in his first nine months of life.
I was driving to the NICU to spend the day with Cody. It was my first time going alone as Derrick had to go back to work. Kelly Clarkson's familiar voice came over the radio...
What if I told you this was all meant to be?
Would you believe me?
Would you agree?
I have never sobbed so hard in my stinking life. I relive that moment every single time I hear the song. No matter what. Even after all of these years. I am in that white Camry, sobbing as I pull into the hospital parking garage. I can even smell the NICU soap that I had to scrub up with before entering. I know it's mostly a love song, but I hear it so differently. From that moment on it became a song I sneak off and take a drive and turn it up as loud as my radio will go and just sob. Every milestone. Every hard moment. Every happy moment. I play that song again and again. Me and Kelly Clarkson...crying it out.
Thankful to have these moments. All of them.
"A moment like this. Some people wait a lifetime. Some people search forever. For that one special kiss. Oh, I can't believe it's happening to me. Some people wait a lifetime for a moment like this."
We fast forward 18 years and WOW has it been a ride. So many peaks and so many valleys. "Everything changes, but beauty remains. Something so tender, I can't explain."
I cranked that song when Cody received his acceptance letter to the U of A. And I have cranked it a lot these last few days.
People keep asking me how I'm doing. And that's hard to explain. I am ELATED. I am THANKFUL. I am HOPEFUL. I am EMOTIONAL. I am so, so, so EXCITED for HIM. And I am a little terrified. But, I have PEACE. I don't know what the next four years will hold for Cody. Or the next 3 months, for that matter. But I am proud of him for taking this step. I am proud of him for ALWAYS going after what he desires. He puts in the work.
I am so thankful for him to have the opportunity to LAUNCH. To go and grow and experience LIFE as a young adult and learn what he has inside to offer this world. The way it is supposed to be. I wish this opportunity for every young adult who is differently-abled.
To fail and get back up and keep trucking. To cling to God and know that He will carry him through.
To go and make the world a better and kinder place. To have the opportunities to explore and gain skills and independence that I cannot teach him at home. To go and snatch up that dream job.
To let his light shine bright.
I literally can't believe it's happening to {him}. This isn't just college. Without this program, Cody would be sitting at home growing more self-isolated than ever. My nightmare. His nightmare. This world can be hard and ugly. I have to know that he can take care of himself, give and receive grace, teach others and learn from others. He will be a wonderful contributing member of society. And moving up to The Hill is his launching pad.
I am so thankful to the U of A. To the EMPOWER program. I am thankful Cody gets to have this moment. He deserves a moment like this.
I have enjoyed these last few weeks with him. He spent his last night at home going to the BWHS game tonight because #SchoolSpiritNeverDies but we worshipped how God turns graves into gardens on the way home. Windows down, music up, like we always do. I'm going to miss doing that every day. Maybe Cooper will humor me once in a while. :) My heart is torn in two, but it is not an even split. I am more thrilled and proud and excited for him than I am sad. I know it won't be easy for him. Great things never are.
Please pray for Cody. Pray for authentic relationships to be formed. Pray for a bubble of protection around him. Pray that he settles in well and begins to find his place in this world. Please also pray for all of the EMPOWER students.
And don't mind this mama, throwing it back to 2002, listening loud and crying those bittersweet tears.
On Saturday, we were riding a major high. Cody, my eldest son, had just been accepted to the University of Arkansas EMPOWER Program. Cody has been looking forward to college and becoming a Razorback for a while now. You see, the EMPOWER program is a four year, non degree program that focuses on academics, independent living, employment, social and leisure skills in a college setting with the goal of producing self-sufficient young adults. Cody wants to be a spirit coach's assistant, a teacher's aide, a physical therapist or maybe even a police officer. One thing is for sure, Cody has a servant's heart who loves the Lord and loves others wholeheartedly. There aren't many options available post high school for young adults who are differently-abled. There aren't many options available because of ignorance and lack of awareness. Some people do not presume competence. Some people fear those that are different. Some people do not even acknowledge Cody as a person worthy of respect. Worthy of great things. What I didn't realize was that his very own peers are some of those people.
I could not imagine researching someone's phone number on the internet and calling them repeatedly and have the courage to say such horrific things about their child. You informed us that Cody was a r*tard. That he didn't look or act like he was 18. That you couldn't understand anything he said because he didn't speak well.
Did you think about how that would make us feel?
Did you feel proud of yourself?
Do you think Cody's life is less valuable than yours?
Do you feel entitled to belittle and bully someone?
Did you feel big?
Did you hang up the phone and pat yourself on the back?
You said you were doing this for "entertainment"...were you entertained?
When you went to bed that night, did you feel happy that you hurt someone else?
This wasn't just you. This was a group of yous. When one of you were interviewed by the dean about why you were doing this your answer was, "That kid just isn't normal. So we all started making fun of him." All. A good 15 kids. Maybe not each of you actively said horrendous things, but not one of you tried to stop it.
Not one of you acted like men.
We thought it was over. But, no. You took to FaceTime on Tuesday night. We had just gotten home, high on a Wolverine win. You asked my husband if he was r*tarded also. You taunted us that we couldn't figure out who you were. You said that there were death threats against my son. You both went on for 7 minutes spewing hate and enjoying every second of it. But, you are just boys. You underestimated the power of a parent who is faced with hate against their child. I found you. And now your parents have learned about the entertainment you seek.
Let me tell you a little bit about the young man you hate.
When I was pregnant with Cody we were not sure that he would live to term. His birth was simply a miracle. We left the hospital without our 8 pound 4 ounce baby boy. He was admitted to the NICU and had the first of 11 surgeries at 3 days old. He spent is first Christmas in the NICU. We traveled hundreds of miles every week for years to seek treatment at hospitals for Hirschsprung's Disease and Clubfeet. For years we sought answers to our questions about his health. Cody didn't walk until he was two. All of the things that you take for granted in your life and feel you are entitled to, walking, talking, eating, friendships, academics and so much more, took HARD WORK and DETERMINATION on Cody's part. They didn't come naturally for him. He had to fight. He goes to school and then goes to therapy after school all in an attempt to be what you determine as worthy..."normal". But what I have learned this week is that I am THANKFUL Cody is nothing like you. If you are normal, then I want Cody to have nothing to do with normal. Because, you see, Cody would never find joy in hurting someone else. He has every right to be angry and sad. Life is HARD for Cody. And you don't make it any easier. But still, he manages to radiate joy and happiness. He loves everyone. He longs for authentic friendships. He knows what pain and sorrow is like. Yet, he chooses joy. Is he perfect? Of course, not. He is a teenager. Does he make mistakes? Sure. Are they intentional? Never. Does most of the ugly things he has learned come from "normal" teenagers? Yes.
What baffles me is you KNOW he is different. You called him "so autistic"...yet you didn't chose to protect him. None of you did. Some how you think you are entitled to the internet and someone beneath you must be deserving of this hate. He's a nobody, right? Just some disabled person that was an easy target for some good laughs. Because you couldn't dare pick on someone your own size.
I don't dare want to think about the others you have hurt. What if you go too far? What if your actions cause someone to hurt them self. Would you be proud? What if someone hurts you? Would you regret your actions?
I go from angry to sad in a moment. As you can tell in my rambling here. You've rocked my world. But don't find satisfaction in that fact. Because what I have learned is that I have so much work to do. While there are so many incredible people in Cody's corner, there are still many of you out there. Those that seek to step on others in order to stand taller. Those that see Cody as less than. I am praying for you though. I am praying that God tugs on your heart as you lay down to sleep. I pray that your heart changes and you seek to protect those around you. To be the positive change we all want to see in the world. Most of all, I hope you look back on this moment when you become a dad and you're holding your entire world in your arms.
Cody won't need to stand on anyone else to feel taller. Cody will stand tall on his own because he isn't afraid of hard work and because joy lives inside of him. Cody and all of the other Cody's out there are fearfully and wonderfully made. Just as you are. So do better. Be better. I know it's in you.
But from where I'm standing, Cody is more of a man than you are. Maybe he could teach you something about that.
I should be packing up and getting ready to head to Kansas
City Mercy with Cody after school…but instead, I am digging my way out of an
emotional box of quicksand.
But, I promise, I am full of joy.
I know that the holidays can be tough for many. And you
would think by now that I would know it’s coming. That I would sense it and be
able to think ahead. Really take charge of it. And yet, for the life of me, I never can until it is on
top of me. Smothering me. Maybe because it is the holidays and we are so busy
trying to get all of the things done in time and not lose the spirit of Jesus’ birth
in the process. But it isn’t until I see myself not responding to texts / calls,
not meeting deadlines, not being nice to my children, longing to stare at the
wall or take the long way home and just sob that I remember why my soul aches
so much.
It is almost December 17th. It is almost December
25th. Cody was due on Christmas Day but came a little early.
This would be what I consider to be Cody’s ‘golden birthday’.
17 on the 17th. And boy is it a blender of emotions. On the one
hand, I remember being told Cody wouldn’t see his first birthday. And am I
thankful that we are about to celebrate his 17th. After watching
that video online about the momma of a boy feeling like his growing up was a
slow breakup…boy I am in the thick of that! Cody informed me this week that he
would be spending his birthday at the school basketball game and cheer
practice. He wanted to let me down easy. And honestly, it didn’t hurt at all.
It was a joyous moment for me. As there is so much joy in each birthday, for
both of my boys, Cody’s aging makes my blender of emotions kick into high gear.
When your child, who is differently-abled, reaches 17 there
are a lot of things you have to start pulling out of that box you tucked way
down deep into your heart and start getting real with yourself. You suddenly
realize that you are standing on the edge of a cliff. At the edge are all of
the resources that have helped your family make it to this point. Your tribe. Over
the edge is adulthood. And you’re just supposed to jump off….you and your
family, alone. While all the resources are on top of the cliff waving at you…nope,
they can’t come with you.
My mind continually races….What resources will no longer be
available to Cody once he reaches adulthood? All of the work he has done in
private therapy nearly every single week day of his life just stops? There aren’t
really adult services to help continue that progress? What specialists are
there to continue his care post pediatrics? Special Needs Trusts, life
insurance, but wait, make sure you don’t have too much saved because Uncle Sam
doesn’t like that. How can you make a plan robust enough that Cody gets what he
needs and Cooper will understand his role as more than just a little brother
without feeling the pressure? HOW DO YOU KNOW WHAT TO PLAN FOR? Options post-graduation?
There is no stability in options post-graduation for a meaningful, fulfilling life
because we are on the cusp of realizing that they aren’t many options and
trying to fix that. How can I prepare him so that he understands? How do I make
sure that I understand his wishes and that we lead by them? How can I help
foster meaningful relationships post high school? Where are the built in social
events for adults? How can I prepare him to live self-sufficiently now so that
when I die, I can rest in peace knowing that he will thrive?
So you worry endlessly about the next chapter. Except, now
that next chapter….it’s here….you’re about to turn the page and step into it. Yet this book, it doesn’t have a single piece
of advice in it. Instead, it is an endless sea of pages with arrows pointing
you forward to the next page.
It can be a real drag.
How do you balance the joy and the sorrow at once?
There.is.so.much.pressure. I desperately want my boys to
live a happy and fulfilling life. But, let me be real honest here…for the Cody
Jensen’s of the world…it takes a village and a warrior mama and dad to get it
done. Instead of supporting their happy and fulfilling life and being a sounding
board and a soft place to land…you have to be the driving force. And you don’t
even know how to do it. It just gets to be a lot sometimes.
I can’t decide if it is a good thing or if it kinda sucks
that we have a big appointment so close to Cody’s birthday. Maybe that just
adds to my emotional blender. The last time we had genetic testing Cody was
about 7. They found a “blip” and they didn’t know at the time if this blip
meant anything. So, they filed it away in the genetic testing filing cabinet to
wait it out. Now, we retest. With the insane amount of progress the world of
genetic testing has made, we are hopeful that there might be some sort of
answer to that, or any other, blips. Cody does not have a disease to be cured.
But Cody is definitely marked under the OTHER box in all of his medical mumbo
jumbo. And y’all, just trust me when I say it makes a lot of things reallllllll
hard and complicated when you check the OTHER box. There aren’t support groups
for the OTHER box. There aren’t dedicated doctors researching the OTHERS. There
isn’t a 5k and fun run dedicated to the OTHERS. There aren’t even doctors out
there trying to work with the OTHERS. I mean, we get passed around like a white
elephant gift because there isn’t a clear path or diagnosis to lean on to move
forward with a care plan. “Oh, he has a what? An appendicostomy? You mean an
appendectomy? No? Oh. He receives an enema through his appendix? Interesting. I
mean, is he having trouble with it? His belly doesn’t feel tender. Just call
the GI department if he ever has trouble. Nah, we don’t really need to do an
ultrasound annually to make sure nothing is going south with his appendix…that
there is any fecal poisoning going on….even though he really wouldn’t be able
to EXPLAIN SYMPTOMS IF HE WAS HAVING THEM. Nah, we will just cross that bridge
if we get there. I mean, let’s not even consider getting him on an established
annual routine for checkups so that when you, mom, get old and senile, he will
already be in the habit of these checkups.” “Oh his nerve problems? Yeah, let’s
just put him on Gabapentin from here to eternity…even though it doesn’t really
do more than mask the problem.” Forgive my attitude. But that’s western
medicine for ya. Especially when your check mark is in the OTHER box.
And while I could give a flip less about a name to associate
with Cody other than a perfect child of God and my son, I know that more testing
will hopefully lead to more answers and that will only help Cody in the future,
specifically, for when I am no longer here. And, Lord willing, will help other
generations of Codys.
A few weeks ago, I got to take Cody to be fitted for a
letterman jacket. Y’all. I was embarrassing. I could not contain my emotions. I
have replayed that moment in my head regularly. He doesn’t have a clue to its
significance. Boy did it mean something to me. I will cherish that moment until
my last breath. And it made me realize that this next year will hold prom where
he will wear his first ever tux / suit. Senior pictures. Graduation. Adulthood.
And then, we will hold hands and jump off the cliff.
So here I am. In all of my honesty...being thankful, scared, excited and angry at
all the same time.
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This is no way a pity party. But maybe like a confession. A
way to process my many emotions and just maybe help someone else not feel
alone.J
It has been a while since one of the Cs has scared me. Thank goodness for that. But we were due and it was Cody who decided to step up to the plate. Yesterday morning I get a call from our babysitters phone and that is abnormal so I quickly answer. Cooper is on the other end speaking very calmly. “Mom, we need help, Cody is very sick. We are at the creek and CiCi put him in the car.” I tore out of the office to meet them at the house. Cody was drenched in sweat (so abnormal) and white as a ghost. We get him inside and get water and a sandwich and a cool rag, all the fixings. They hadn’t been outside long enough to warrant overheating so I call the pediatrician. I really wanted him seen being a Friday and also that Cody isn’t one to faint or any of the things that happened in that moment. She is booked solid and tells us to go to ACNW and have them send everything to her.
Pause.
Y’all. I can’t tell you how HUGE it is to have ACNW in our backyard. I have had to “bring him to the ER” and that meant driving 3 hours in a worried state to the ACH ER.
Feel very lucky that we have this hospital!
I go through the checklist with Cody of what he ate, drank, did, etc. I ask, did you take your medicine last night? Cody is 15, we are working on independent living so at night he goes to the bathroom and brushes his teeth and takes his medicine. I don’t hover. Wellllll, I can also tell when he is lying so I go and check his medicine. It is clear he hasn’t been taking it.
Way to go, Mom.
We load up and go to Springdale. Everyone there is SO kind. Shout out: Nurse Lindsay, Nurse Josh, Nurse Caroline and Doctor Michelle!
I was SO pleased with the thoroughness and honesty of their exam and tests. When we arrived, Cody had hypertension and a very high heart rate. He was sweating profusely again and was feeling “dizzy in his head”. The wires, the IV, the various tests and pokes...it is so easy to file those memories away in a closet in your soul that is marked: TRAUMATIC HISTORY. But, those kinds of memories have a way of jumping out when you least expect it. It can be a song on the radio. A commercial on TV. A victory that Cody has worked hard to achieve. This last week those unexpected memories have been popping up more frequently. Cody being excited about his first job and now, sitting in the ER room watching the doctors and nurses evaluate what is happening to my son. It reminded me that Cody’s journey is far from over. We have been coasting and that just is not acceptable. Just because the surgeries are *hopefully* behind us doesn’t mean I can coast. He is far too precious for that. I let him down. That I won’t do again.
After all of the tests, we learned that Cody was going through withdrawals from stopping his meds abruptly. That is a sight I don’t care to ever see again. Through it all, Cody was a champ. He had everyone laughing and giving out high fives and coming to visit. That’s my special and unique kid. He can bring joy in every situation. He is the patient and he is keeping everyone else calm.
The doctors did test his heart. They wanted to be sure there wasn’t any damage and praise God there is not. Of course not! That heart of gold is SO strong!
After one last round of high fives and good-byes, we blow that joint with a promise to never, ever stop taking our meds again. As we get in the car, the first thing I hear is this love song. And while it was written as a love song between lovers, it broken me down and brought me back to those long, nerve-wracking days and nights in hospitals and waiting rooms. Surgeries, colostomy bags, casts...I needed to be brought back there. I allowed myself to be cocky and just complacent. Cody is far too precious for that.
I can't count the times
I almost said what's on my mind But I didn't Just the other day I wrote down all the things I'd say But I couldn't I just couldn't Baby I know that you've been wondering Mmm, so here goes nothing
In case you didn't know Baby I'm crazy 'bout you And I would be lying if I said That I could live this life without you Even though I don't tell you all the time You had my heart a long, long time ago In case you didn't know
Cody feels much better today. And I am thanking God for the gentle reminder of His precious gifts.
Every year I sit at the computer and write out my thoughts as I approach Cody's birthday. Life moves us along so quickly that I have to sit back and reflect. Put the breaks on, step outside of myself and look over moments. I mean, moments go by so quickly...they're gone in an instant if we don't stop and savor them. I love collecting moments. I love packing them away in my heart and returning to them as often as possible. I try so hard to cling to them, tightly, until I can physically feel them again. Honestly, (and because this is my safe place to express my truest feelings) it isn't that I am scared of death, but I am seeing as clear as day how fleeting life is. It passes us by faster than we can get a grip on. Sometimes, when I am cherishing those caught moments, I get really emotional knowing that time is marching on and there is nothing I can do about it. I can't slow it down. It really brings me back to when my grandfather was dying. I was 17 years old and my grandparents had picked me up for an ice cream date at Braums. We were on our way back to my house and some song was on the radio...some old country song that I don't remember, but my grandpa just broke down into a million shattered pieces. He knew he was dying and he was trying so damn hard to cling to all of the moments. He was trying to pluck them out of the past and relive them. That heartbreaking moment changed me. If I could have one single super power, it would certainly be the gift of time travel. I want to be able to step and back and relive so many moments.
As I reflect on Cody's 2016, I literally sob from JOY and RELIEF and CALMNESS and PEACE. God has given that boy WINGS and he has SOARED. Whoa. Hold on, I have to really have a moment with those words. Most of you have faithfully supported and prayed for Cody all of his life. You've let us into your lives and shared in our many peaks and valleys. There have been so many valleys. So much sadness and loss. Y'all, finally he has had the best year of his life. He is the most deserving person of a best year ever! It hasn't been perfect and it hasn't been a storybook year of a typical 13 year old. However, that kid has really come into his own. He is comfortable (mostly..as you can be as a teenager!) in his skin. Happy and love pour out of his soul and spill over into everything he does. It is simply amazing that he is MY flesh and blood.
Let me relive some precious moments. I am happy to report that 99.9% of these moments revolve around school. This warms my heart to no end because school was my greatest joy. I was a social butterfly so my very favorite memories are all from school. I want nothing more than Cody to enjoy these super special years also.
I will always harbor fear for Cody's adulthood. He is super cool now, but be real honest here, how many 40 year old men that are slightly "off" or "not quite right" freak you out? Especially, those that L-O-V-E you children as much as Cody does? I always say that my mission in my life is to help people remember the Cody Jensens of the world...well, here is really where that comes into play, folks. However, the students at Lincoln Junior High have given me a tiny bit of faith that they will truly change the world in regards to this. You see, Cody has made everyone his friend. Annnnd, I mean this literally. No one really gets a choice, he just makes everyone his friend. Even his favorite cafeteria worker. He sent me a selfie of the two of them and finds this guy at Walmart (his second job) and visits with him. And y'all, the kiddos at Lincoln have really embraced and ACCEPTED him. ACCEPTANCE. That has been a dirty word in my heart for a very long time. Acceptance is hard. I mean, HARD. But these kids...
They have accepted that he most likely will not be able to remember your name, but that when he yells "BYE MY LINCOLN!" they know he is talking to one of you football or basketball players. And they always say bye back. Always.
The cheerleaders accept that he will say "BYE MY CHEERLEADER!" and point and yell "BFF" every.single.day.in.the.car.rider.line. But, they always point and yell in return, "BFF!"
Those kids have no idea how many nights I have cried to God and pleaded for his peers to ACCEPT and LOVE him. They just can't realize that they are my answered prayers.
These kids have learned to ACCEPT that he doesn't read, write or type well, but when he texts a simple HI or I love you, that they were on his mind. And they take the time to send a quick HI back. It is really that simple people. And these kids...12, 13 and 14 are GETTING IT.
At the first of the year, Coach McKnight shot me an email asking if Cody would like to be a manager for the boys basketball team.
Side bar: do everything you can to support this coach and this team. Guys, Coach McKnight is teaching these young men that they can make a difference in a person's life FOREVER just by the above simple gestures. He cannot possibly realize the gravity of what he is pouring into them. I can't say enough about this entire situation. This is one of the moments that I just hold onto so tightly.
Of course Cody wanted to be the manager of the team! HELLO, if you have ever met Cody, you will realize pretty quickly that he believes pretty strongly in his management skills! He had been dying for basketball to start...the kid loves all things Lincoln but he was ready for his debut! He was PART OF THE TEAM, Y'ALL!! He wasn't watching from the stands! He was sporting a LEOPARD UNIFORM WITH HIS FREAKING NAME ON THE BACK! He has never been more proud. The first game was an away game. Coach said it wasn't necessary to attend away games. Ha. Seriously, Coach? So, I drove him to Siloam and as we walked in the door of the gym, the team all waved and hollered for Cody to come over and sit with them. Are you kidding me? These are the things that you as a parent of a 'typical' child take for granted. These things don't happen for our kids. That was a moment that I reflect on often. The game gets started...3 minutes in Coach calls a time out. The team huddles up. Cody Jensen grabs his water bottle carrier and races over to the huddle...he is bobbing up and down, weaving in and out, trying to get in the middle of that huddle. Seriously, hydration will never be an issue for that team. Bathroom breaks...maybe. :)
A friend stopped by tonight to drop off goodies for Cody's birthday party tomorrow and he went and got his uniform, made her close her eyes so he could surprise her and show her that he was part of the team. He begs his family to come watch his beloved Leopards every week. I can't say enough about these moments.
Another precious moment. Cody has a really hard time retaining information such as the daily announcements that come over the speakers at the school so I am thankful for the daily emails so I know what's going on. Well, I see the email about the various clubs that Lincoln has and I read them off to Cody to see what ones he might be interested in. Immediately, he is excited about the Ambassador club. Ya know, new kids start at your school and you become their friend and eat lunch with them, show them around, introduce them to your friends, etc.? Well, Cody was ALL OVER THAT. After all, he feels like Lincoln is all his. It was required to write a paragraph explaining why you would make a good ambassador. We sat down at the computer and Cody typed it perfectly and it went something like this(shout out Mrs. Bennett!): My name is Cody and I love making new friends. I love my Lincoln and want to help make new friends. Love, Cody. I mean really? Club PROWL was next on his list. Spirit Club for his Lincoln Leopards?! Matching club t-shirts (ahem, uniform?!) and black and gold poms and group seating at football games?! Y-E-S. I mean, this only fuels his love of cheering and drive to become a Bentonville West High School Cheerleader!
He has involved himself in nearly everything he can at school. He loves this because he loves his school and the people in it more than words could possibly describe. I love this because my son is happy. And people know him. The latter is important because Derrick and I have to live with the reality of Cody being taken advantage of...being put in a dangerous situation. But, with everyone knowing him and with him being involved in all of these things that make him so happy, he is KNOWN. He is somewhat protected. Derrick and I can bring the helicopter in for a landing and feel a little bit of peace in that.
There is so much more. He enjoys helping in Wee World (preschool) at our church. He loves those littles and they love him...he isn't different to them. Here's to hoping they are the next generation of youth that destroy that gap between normal and different. He knows that at 14 you are allowed to have a Facebook (eye roll) and get your driving permit. We are working on the permit test questions, but trust me, I'd rather him drive a car than have a Facebook! His teachers are the best of the best. Mrs. Edwards has fostered his "management" skills and gives the upper classmen the freedom to be role models to the underclassmen. In art, he did a project about his hero and he chose Mrs. Edwards. I don't think I really have to say more. Other than every day during our ride to school, he reminds me that she is the absolute best. It really makes my heart swell to add so many precious people to my tribe. He is doing great in Special Olympics and enjoys the social aspect of it far more than the actual sports. Yeah, he gets it from his mama.
I know this journey well. I know that this high won't last forever. And you know what, as much as I am NOT ok with that...I can put that reality in a jar and set it aside because these moments are far too good to cloud with the grief and the loss and the pain that still consumes me from time to time. This mom thing is really freaking hard. And Cody has endured far more than he deserves. And yet, that kid is the happiest kid that ever was. Yes, there are realities. He will likely never read beyond a Kindergarten level. He may not be chosen for BWHS Cheer. He may not get married. He may not have children. He may get forgotten as adulthood approaches He may struggle to have a job. I mean, this is what this mom gig entails. These realities. Our brains never stop because we have to anticipate every possible situation for them. We have to prep their heart and our own and hope that we can throw ours out in front of the bus to protect theirs. But, I'll carry that burden because when Cody enters a room, he lights it up. He brings the party every time. And when I stop and cherish those moments (like when he enters a room and shouts, "SEXY IS IN THE HOUSE!" or when he stops a solider and says, "thank you for your service" or when he tells strangers to have a good day or when he requests our prayers for people completely at random) I feel God wrapping us up in a great big hug and winking at me. God is reminding me that we are ALL precious in His sight. That we are ALL created in His image and He makes no mistakes. Cody is a great big giant blessing to everyone he comes in contact with. And God planted that giant blessing in my tummy.
He certainly has taught me far more than I will ever teach him. I look to him for lessons and he never disappoints. He has taught me strength and courage and the ability to get out of our comfort zones and just L-I-V-E and live with a smile.
If you read this, thank you. Thank you to each of you that support him. Thank you to each of you that cheer him on. Thank you to each of you that love him. Thank you to each of you that pray for him. Thank you to each of you that have taught your children that we embrace different. Thank you, thank you, thank you!! You make a difference. Your support carries me as well and pushes me forward. I could fill this white space for eternity with all of the people that have made him smile and that is all I could ever hope for. Everytime I get started on one moment another one immediately pops in my head. But, my bottom line in sharing my life is simple: to promote awareness...to open eyes to the life of someone that is differently abled. People tell me all the time, "you don't know if you don't know". I kind of hate it. But, they are right. So, I'm here to help you know. I am here to shout from the rooftops the awesomeness of the Cody Jensens of the world. The simple. The honest. The raw. The love. The innocence. The lovely innocence. And lastly, that through Cody you can see the love of our Savior. The beauty of innocence is leaving children faster and faster. God blessed Cody with that beautiful innocence that I think he will have forever. We all can learn a lot from his zest for life, living and happiness! He is everyone's biggest cheerleader.
Oh yeah, capture your moments! Cherish them!
HAPPY 14TH BIRTHDAY, CODY. YOU ARE LOVED. YOU ARE AMAZING. YOU ARE A JOY. AND YOU MAKE ME PROUD, EVERYDAY.
Please continue to pray for Cody's journey. Please continue to think of the Cody Jensens of the world as you move through life. Below is a timehop post from 2 years ago that holds more beautiful moments.
12 years ago tonight I was preparing to bring my first born son into this world. I was only 19 years old, but felt like becoming a mother was the only thing I had been destined to become. I wasn't scared by this point. Although in the beginning, I had spent many months terrified as there was SO much unknown about the state of my baby. A conversation that I had with my doctor, one I'm sure he doesn't realize the impact it had on me and how often I replay it in my head, we were discussing the pros and cons to having an amnio once we confirmed things weren't right and he asks, "Kelli, what are you going to do with the information? How will this help you?" All I could say was, "So I can be prepared to do everything he needs." That conversation has carried me through so many dark times. Being prepared to do anything and everything he needs to have the best shot. It carried me through kissing him goodbye through a plastic box as they put my baby into an ambulance to transport him to the NICU. It carried me through going home without my baby and spending his first Christmas in the NICU. It carried me through endless hours in hospitals. It carried me through the most gut - wrenching moments of the words, "We will take good care of him, Mom." as nurses wheeled my baby into the operating room 11 times. It really carried me through as we were kicked out of daycare after daycare after daycare because they couldn't handle his special needs. It carried me through the stares from strangers. The bullies. It carried me through temper tantrums and biting. It carried me through so.many.tears. It carried me through many doctor appointments and therapy sessions. It carried me through years of sleepless nights. It carried me through the stresses these things cause on a marriage and on sanity. It carries me through the struggle of trying to understand why people expect Cody to alter how he is because it bothers the "normal" people. Why can't you alter YOUR thoughts and feelings. It continues to carry me through the extreme loneliness. It also continues to help carry me through the anger because of the actions, words and lack of compassion of others.
It carries me because knowledge really is power. When I felt weak or unsure, I went back to that moment....getting prepared. I could do this. I could be his advocate. Because being prepared didn't give us the answers I continue to seek, but it sort of catapulted me into this mode of Mom. That this child would depend on me to carry him until he could walk and then walk hand in hand with him until he could run and then I could stand in awe of my son. It prepared me for the job that I can only describe as pure, honest, real love.
I always am an emotional basket case in the days leading up to December 17th. Cody was so close to not being here. And that...that would be a real injustice to this world, to everyone that Cody's path would cross. I sat on that table with a choice. No one would have blamed me had I made a different decision. But instead, I chose to be prepared. And I am so, so thankful.
I say it often, but I am so lucky to be Cody's mom. I see things so differently because of that boy. And I am so thankful to the doctors, therapists, teachers, friends and family that has made his journey so big and important and HEARD. I know that makes it sound like an award acceptance speech or something but with Cody and the tribe that we have been blessed with, it sure feels like I have won an award!
There are so many angels that have walked this journey with us and I am sure I have missed several (or maybe aren't friends on FB!) important people but you have to know that you are never far from our thoughts and our gratitude is never ending.
Happiest (almost) 12th Birthday Cody Ryan! I can't say thank you enough for keeping my heart so full of love and pride.
You make me proud, EVERYDAY. ♡
Attention Deficit / Hyperactivity Disorder, Combined Presentation
Oppositional Defiant Disorder
Generalized Anxiety Disorder
Social Anxiety Disorder - Deferred
Major Depressive Disorder, Single Episode, Mild Deferred
I've been staring at this all day long. Let me back up a little bit.
Derrick and I knew from very early on that Cooper would likely struggle with focusing, attention, sitting still, and so on. I mean, if you know Derrick and I, you wouldn't be surprised. D and I loved school, but only as a means to be social. When Cooper was 3, his daycare teacher stopped me one morning and asked me if I had thought about having Cooper tested for ADD. I replied by asking her how old she was (18), how many children she had (none) and what was her degree in (she didn't have one). Hmm. Great...so we won't have this conversation again. :) Cooper is an AMAZING child. He is incredibly handsome and when he wrinkles his nose and pulls his shoulders up and lets out a giggle....my heart nearly explodes with love and admiration. He is silly. He is funny. He is CREATIVE and his imagination brightens my every waking moment. He is an All-American boy that can tell you about every tractor, truck and super hero possible and his favorite sentences start with, "Hey, what if I were a....." He loves his momma. He loves to cuddle and he loves to give me big hugs and then play with my hair. He loves to go to work with his Daddy and talk him into letting him drive the "Little Bobcat". He wants to be a 'worker' when he grows up, just like his Daddy. He never wants to marry, however, because girls absolutely terrify him.
But Cooper is struggling. He is struggling in school. It is nearly impossible for him to sit and focus and understand what is going on and even harder for him to complete tasks such as reading and writing. But, the child can drive a tractor like he has been doing so for 50 years. But he can't color inside the lines or write his numbers to 25. He CAN. Cooper absolutely CAN do those things...but I guess the right thing to say is that this fog...this cloud of confusion....is hindering Cooper busting through and being the Cooper that I know is in there. Cooper is sweet. He is never malicious or cruel. He wants to be loved and he wants to love. He wants to play super heroes with all of his buddies and he wants to climb trees and drive tractors. But his confidence is dwindling day by day. Things are coming out of his mouth like,
Mom, I tried so hard to be good today but my brain just wouldn't let me.
Mom, the girls at school told me that my coloring was so ugly. Why are they so mean to me?
Mom, I am just stupid. I can't write as good as everyone else so I'm just going to quit.
Mom, my stomach hurts so bad like I'm going to throw up.
Mom, I was trying to stand in line between Sally and Sue like I'm supposed to but Sally pushed me down and when I fell, I hit another kid and I got in trouble. Why didn't Sally get in trouble for pushing me?
Mom, I want to play with my friends at recess.
Mom, I can't learn these words.
Mom, I am just not good at school.
I just die inside. I just die. He is rapidly losing his spark...the things that make him so, so special. The emotional toll that ADD/ADHD takes on a child is huge. Coop is so self-conscious. He worries until his stomach hurts. He is terrified of being singled out and being 'outed' for not understanding. No one wants that for their child. Coop deserves to shine like the bright kid that he honestly is. So, he and I met with Dr. Lawson (I highly recommend him, by the way!) and did a lot of talking. Coop is so honest, he laid it all out for the doc. Fast forward to today, Derrick and I sat across from Dr. Lawson as he explained so beautifully all of the things going on with Cooper. I knew this day would come. Nothing Dr. Lawson said was shocking or surprising to me. Yet, I got in the car and the tears just started pouring. Mostly for Cooper and how he feels and my God if I could take those feelings of worry and worthlessness from him...I would. I would carry all of it for him. I think I became so emotional at the validation of all that Cooper feels and that his feelings are of concern to others besides just Mom. But I also cried out of self pity. In those moments, I felt like a failure. Like somehow, this was my fault. After all, Derrick and I have cried many nights together over the fear of our boys struggling in any way like we did in school. And here we are. He is struggling and his self worth is taking a major hit, it is affecting him HARD. And then I felt like I have pressured Cooper (in my own mind) to be perfect because after all, his brother has required so much extra. Selfishly, I needed Coop to be perfect because I wasn't sure I had the mental or emotional stability to give any additional help in that department. I carry it all (D is about as emotionally supportive as a feral cat...bless his heart, he tries...). Did I do something wrong, God? I actually asked that question. I actually felt like I was bad and the punishment was being taken out on my children. Cody and Cooper are so deserving of all the perfection the world has to offer (as all children do). I hear the skin crawling phrase "As long as he/she is healthy" all too often and that always cuts me so deep. So, if I have children with special needs, differences, health issues, etc. did I get dealt a hand that isn't as worthy as that 'as long as he/she is healthy' child??? No. No, I most certainly did not. And I know those things aren't true. I know it's irrational, crazy thoughts of a worried momma.
I know that I was chosen....chosen for such an extraordinary gift that needed extraordinary care. I know that I am the lucky one.
But that leaves Cooper not feeling so lucky. But, that is all about to change. I have had my pity party and now I am ready for action. We are working on a medication that will give some immediate results on focusing and helping to apply those breaks that he just can't always apply and then that will help in the areas of worry, anxiety and depression. We are working with Dr. Lawson who I feel like is the perfect match for Cooper and he will help us weed through what the medicine doesn't clear up. I will knock this 504 plan out to help Coop get set up in an educational setting that will encourge his success. And then, Coop will see for himself what everyone else sees in him. How wonderfully made he is. How special and awesome he is. How caring and funny and loving he is. And that will make this momma the happiest she could ever be.
Wow! Tomorrow, December 17th, 2013, Cody Jensen will turn 11 years old! I guess I don't have to say that time flies. Shoot, I'm saying it anyway, time.flies.
Today, Cody had an appointment with his Neurologist...you know, the one I really don't like. The one that said all those years ago about how she wasn't God and blah, blah, blah. I've learned to tolerate her. Simply because she is a smart woman (well, medically speaking she is) and Cody really loves her so I try to be more like he is and just love the woman. Anyway, while she was giving him a once over, I was so impressed on some of his achievements that he has made since our appointment with her last year. He was getting up on his tippie toes, that folks, has always been impossible for Cody Jensen. He was mature with her. His conversation was mature. His speech is tough and delayed but he was talking with such maturity that it almost knocked me out of my chair. She got him. He got her. I was no longer needed there. Please don't pity me on that! I have gotten down on my knees and prayed, no, I have begged for God to give that gift to Cody. The gift of being heard. The gift of his voice. I did not have to repeat every sentence that he spoke back to her so that she would understand what he was saying. For Cody's entire life I have had to speak for him. I have gotten so used to repeating each sentence just so that A. he was understood and B. so that he didn't have to suffer the embarrassment and frustration of hearing 'Huh?'. I was and still am blown away.
So that brings me to eleven years ago. I know that as a parent, we love to reminisce each year on our child's birthday and I would like to do the same. As much as I cherish that chapter in my life, each year the wound is ripped wide open again and I'm stuck in the middle of this mix of pain and joy. So, I'm inclined to go there and talk about it. I feel like it helps me heal once again but then again it also reminds me on a much deeper level than day to day, what a blessing Cody Jensen is. Plus, I want to be able to share his story with him as he gets older. So, the more I talk about it, the better I can recite every incredible detail.
On this night, eleven years ago my world was obviously about to be rocked. Derrick and I were scheduled for an induction as Cody was due on Christmas Day and with the high risk nature or actually, I would call it more of a big, giant question mark surrounding the birth of our first son, we opted to induce a week early. We knew Cody would have Clubfeet, but according to our amnio, Cody would otherwise be 'normal'. A word I would grow to despise more than any other word in the history of words. Derrick and I felt prepared. I had read everything I could get my hands on regarding Clubfeet and knew the process we would be taking. I felt confident and comfortable.
At 9:04pm on December 17, 2002 Cody Ryan Jensen was born. He weighed 8 pounds, 4 ounces and was just as gorgeous as the sunrise. Praise God, for close to 24 hours Derrick and I (and our amazing family and friends) got to be perfectly oblivious to anything and everything that would come to be. Fast forward to December 19th and well....everything stayed in fast forward. It was like being in the middle of a tornado and there wasn't a dang thing I could do to hold on. I didn't get to bring my baby home from the hospital. Instead, they brought him to me in an incubator and let me touch his little precious fingers before they transported him by ambulance to the NICU in Springdale. We left the hospital with an empty car seat and walked into our home without our son. That moment was so life changing. The doctors had sent us home to drop all of our hospital stuff off while they got Cody transported and setup in the NICU. Derrick grabbed the disposable camera (yeah, it was a decade ago!) and we took a selfie, went to Walmart and had it developed and took it with us. We put it in his crib so that when we went home at night, Cody still had his mom and dad there with him. They also sent me home with a cloth doll to wear inside of my shirt so that my scent would be on it and it would stay with him when I wasn't there, so he was constantly smelling me. They were out of blue dolls so Cody got pink. I still swear to this day that is the reason he loves pink! :)
At three days old he had his first of 11 surgeries and he spent his first Christmas in the NICU. Those first days in the NICU Derrick and I were just learning how to breathe again, and well, teaching us how to become parents on the fast track...on this very, very special track. After Derrick and I passed our overnight test with Cody (staying in the hospital with him) Cody was discharged on New Year's Eve 2002. What a special gift!
The first year of Cody's life was almost literally spent in the hospital between the Shriner's Hospital in St. Louis, the NWAMC - Springdale and ACH Little Rock. It was full of some of the most beautiful moments and yet it was still full of some of the lowest moments in my life. At first, we were so consumed with learning how to handle colostomy bags and cast changes and pressure points and pre and post surgeries that we couldn't concentrate on much else. What seemed like endless nights with your child in hospital rooms and surgeries and iv's and meds is enough to drive a person to a place that is far beyond insanity. And yet, that is where my survival mode for myself and Cody turned into the greatest blessing -- it is where Motherhood began for me. Don't get me wrong, the place, past insanity, left me with scars. It left Derrick with scars. But, it also gave us the gift of who Cody really is to us. This child that gives a part of himself to everyone that can't even be described with the word love. It gave us the gift of being able to see past 'as long as the baby is healthy' and know that without a shadow of a doubt that Cody, with every physical and emotional scar we have endured, that HE has endured,is everything a parent needs in a child. Yes, there are many, many times that my heart shatters at the thought of what he has been through. What he will go through. Some of the things that he may miss out on. But that is stupid. And that is the place, past insanity, that Satan tries to take me to to keep me from seeing the beauty and the gift in all of this.
My world, the entire world, is such a better place with Cody in it. He certainly is a special needs child. In eleven years, he has spread his 'special' to so many people. He doesn't even know it. How his innocence and his genuine love for everyone is so perfect for the dark and the ugly that is trying to consume our world. I guess that is the only sad part, he just doesn't know how wonderfully made he really is and the joy he brings to so, so many people. Thank God for Cody Jensen.
Happy 11th Birthday my sweet, sweet boy. You are something. Keep on keepin' on because you continue to amaze your momma!
I included just a few pictures of Cody as a baby. Gosh, he was so dang cute.
