School update

So, KC’s standard testing results came back recently. I clearly remember the day my big girls brought theirs home from VPK. I remember their scores being a source of pride. They’d each done a great job and it felt, in part, that their results were a reflection of my hard work preparing them for their school careers.

However, I immediately felt teary as I reached for KC’s envelope. I was sure the results were going to sting just a little. I know how hard we’ve worked to get to this point and I know how smart she is but something about seeing on paper how she measures to someone else’s “typical” standards made me anxious. I read through her other testing papers first and her teacher was kind and thoughtful enough to write littles notes here and there in the areas that KC did really well. Seeing those little victories immediately began to diffuse some tension. Overall she did great but my favorite moment was a personal message from her amazing teacher. She reminded me that Exceeding academic Expectations is, “not an essential life skill.” But rather love and kindness and empathy even towards those that aren’t choosing kindness matter most and her words, “in these areas KC is off the charts,” gave me that truest amount of pride that I think a parent could possibly ever feel.

I had a good time laughing at myself and the pride I had felt in my big girls test scores. It was equally funny that I was celebrating scores for K that I’m certain I wouldn’t have celebrated for my other two. It was also a really important reality check on the pressure I sometimes put on my kids to perform well in areas that matter the least. We are surely blessed with incredible teachers. I’m learning so much this year am I’m always so thankful for the amazing people KC brings to her team and into our lives.

Also, VPK pictures are in! 😍😍😍

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Celebrating You

Here we are in our 5th year of life with our 3rd little miracle, KC. This is also our 5th year celebrating Down Syndrome Awareness month. Wow are we blessed!

I was trying to decided what to write about this month and after a little bit of a weird school week for KC I wound up googling what the Bible has to say about disability. I came across several pages that cited specific verses about “disabilities” but most of them included accounts of healing which indicates to me many people view illness and disability the same. This told me some of the answers I find may be skewed. Honestly, I may have thought of the two as the same before having a daughter with an extra chromosome but I now know that they are two very separate matters.

I also came across many sites that said disability exists because of sin.

This logic made me feel both sad and confused. On the one hand I’ve read so many times that we are knit together by our Creator in the womb and we are fearfully and wonderfully made (Psalm 139). I easily accepted that KC was created in his image from very early in her diagnoses. (Gen 1:27) So much good and so much beauty has come directly from her existence. Sure there have been and will continue to be plenty of dark days and hard times but that’s life with imperfect people in an imperfect world.

So how now do I process the belief that just one of my fearfully made gifts is a result of sin? I feel like I’m beginning to understand why this community often feels so excluded from the church. I continued to search for more answers and I eventually came across a very specific blog. I felt drawn to this one and wasn’t sure why. As I skimmed the page I noticed that the publish date was 10/2/12, the day KC was born! Next I was excited that author first sited on of my favorites, John 9:1-3. “As he passed by, he saw a man blind from birth. And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.”

She was reiterating a truth I clearly needed to be reminded of that completely debunks the idea that disability is a result of sin. We are ALL created with a purpose. KC’s diagnosis was NOT a mistake and not result of something gone wrong. It was the result of a Savior that chose to display his good works in and through her. Here is the blog if you’d like to read more: http://www.shannondingle.com/blog//2012/10/my-8-favorite-bible-verses-for-special.html

I love how perfect his power is made in our weakness (2 Cor 12:9). I went to sleep wrestling with all of the thoughts going on in my mind about disability. The next morning one of my best friends sent me a photo of she and I at KC’s baby shower. My mind immediately remembered how difficult that shower was. At the time, the last statistic we’d been given on her survival was just 2%. I only invited very close friends and family in case it was too difficult. I didn’t remove the tags from any of the gifts. I brought them home, set them on her bedroom floor and shut the door. I was busy building my protective heart wall in case we never got to bring her home. My heart was renewed that morning after seeing that photo thinking about how far she’d come as I drove her to her preschool class.

When we got to school I realized the date was Sept 29th. This was the very day 5 years ago that we checked into the hospital because I was in labor, just 32 weeks along and terrified.

Now I was laughing at myself, I spent the night before worried and wrestling with thoughts about reasons and causes for disabilities and God was reminding me of what actually mattered. It matters that she was His masterpiece (Eph 2:10). It matters that she was made to love and be loved, both of which she does so well. It matters that we do our best to raise our girls with the understanding that the way that they love others will sometimes be the only thing that sets them apart from the rest of the world (John 13:35). It matters that we show this love by learning to celebrate our differences and fighting for inclusion for all. I love this quote from Audre Lorde, “It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences.”

I love that my reminders didn’t end there. I was on my way out of school when we randomly ran into Roger. He was the one that showed up the day KC was born and asked if he could’ve pray for her. We expected words of encouragement

from him that day but instead he only spoke of healing. He pleaded for healing on our behalf just moments before KC entered the world. She ran up to tell him, “hi.” She ran, she spoke, and she smiled at the one who believed with and for us.

Thank you, God, for the last 5 years with this gift. Thank you for entrusting us with three beautifully different children to share your love with. Thank you for KC’s life and the many good things that are a direct result of her uniqueness. Happy 5th birthday baby girl and happy Down syndrome awareness month. Oh how we love celebrating you!

Celebrating Women

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As a mom of three girls, I love any excuse to celebrate women. International Women’s Day is an especially great excuse because I think it’s important for my girls to understand that some things are worth taking a stand for, even if it’s unpopular. Injustices should not be overlooked and women can take a stand and create change. This is one of our all time favorite books, Good Night Stories for Rebel Girls, and AK wrote one of my all time favorite stories in it.

The girls current favorites are The Mirabal Sisters and Matilda Montoya.

Who is your favorite extraordinary woman?

 

 

 

 

 

Music Speaks

 

We are just a few weeks away from KC’s 4th birthday and social media keeps reminding me about a trip we took just two weeks before she was born. It was our middle daughter’s birthday week and we’d had a family trip to see The Mouse planned. I was about 7 months pregnant with KC and we had a high risk doctor appointment scheduled just a couple days before we were scheduled to leave. The appointment was awful. What we excepted to be a quick scan turned into a “she needs to come out now,” and then back to a “lets give her just a little more time because she likely won’t make it now.” It was a rollercoaster of an appointment to say the least. We did get permission to go on the trip as planned but obviously felt an overall sense of fear and defeat. We were determined to try and have a good time celebrating our middle love and keep a positive attitude. We had no idea what our week would look like when we returned and we determined that this trip should be joyous. We prayed a lot in those next couple days before we left. I remember praying a lot for a good attitude. It was hard to smile through the pain but I remember while praying one of those days a song by Hillsong called Healer popped into my mind.

I love that our minds were created in such a way that we can connect with a song no matter how long its been since we last heard it and recall all of the lyrics and it feels likes it speaks directly to us.  Music can speak to us in such a unique way. In the song they sing about Christ being our healer and while it mentions Him being the healer of our disease, which absolutely was my prayer for KC’s imperfect heart, it also talks about trusting Him because he is more than enough. I found so much comfort in replaying that song in my mind during that tough week. I didn’t know how KC’s story would play out. I prayed He was healing her fragile heart while I carried her in my womb even though all statistics said impossible. But, I had so much comfort in knowing He is also my healer and trusting in Him meant it could eventually be my broken heart that needed the healing.

A friend that has been working with Hillsong’s new movie being released tomorrow (Sept 16th, my middle’s birthday!!!) sent me the soundtrack to Let Hope Rise. It is amazing and the timing couldn’t be more perfect. I can’t wait to watch the movie. I can’t wait to  I can’t wait to discover what speaks to my heart next.

What song God placed on your heart  in a time of need?

 

 

 

The Power of Yet

So, I saw this trailer for the upcoming movie GREATER (releases August 26th) and I felt so moved by Brandon’s story.

One of the things about having an extra chromosome requires that KC works a little harder to accomplish things that may come easily to the rest of us. Thankfully she is a very determined little girl but there are some things determination alone can’t conquer. There are skills that require guidance and practice and coaching for her to master.

One time KC was working in one of her sessions on a new skill. The instructor made several attempts to model what she wanted KC to do but it wasn’t clicking for KC. The instructor looked at me and said, “she just can’t understand this, can she?” I, being a super sensitive momma bear of a kiddo with special needs working her tail off to keep up, had my feelings hurt. The comment wasn’t meant to be rude or hurtful or ugly but it just didn’t sit right with me.

The next week I was at another session with KC with a different instructor and I mentioned the encounter. I’ll never forget what she said back, “She just hasn’t understood it YET. KC simply needs it taught in another way.” She then offered several suggestions and within a week KC had completely mastered this new skill. She was right though. KC was not understanding what was being modeled for her but that didn’t meant she wasn’t capable of learning this new skill. It simply meant she wasn’t learning in that way and needed a new model.

Its an amazing thing to watch how the positive influence of one person can change everything. While the skill that KC mastered was not something earth shattering that will get KC into college at age 3 or qualify her the Olympics, it has completely and permanently changed my perspective on her education. It’s challenged me to constantly seek new ways to help her grasp a new concept. When KC works with someone new I am quick to tell them that she is an excellent learner with a great memory and then leave the ball in their court knowing that we expect her to learn and we expect the instructor to find the right way to teach her.

I love that in Brandon’s story, it took his determination along with the positive influence of  someone else to push him all the way to reaching his dream of playing in the NFL. It reminds of the power and weight of our words. It shows up how easily we can give someone the right push in the right direction to carry them to reach their full potential. It encourages me to always keep pushing my girls to achieve their goals with the hopes that they are cheerleaders to others along the way.

From one of KCs favorite Sesame Street Songs 🙂 The Power of Yet https://youtu.be/XLeUvZvuvAs

 

Who Inspires You? Plus a give away!

In case you can’t tell from my last two posts, I’m totally obsessed with A&E’s Born This Way right now. I love when people are so willing to share their experiences for the sole purpose of encouraging and inspiring others.

I saw this little clip recently of Rachel from the show and I love it. (Click Link on FB here    )  Besides Rachel and her parents being so inspiring for me, she reminds how important it is to reflect on the things and people that inspire me. Rachel’s dad talks about how being the parent of someone with an intellectual disability is just a little bit different. He talks about how things happen on a different timeline and while they are still celebrated all the same its just flat out different.

I think about how my experiences being KC’s mom has differed from the big girls. Again, we’ve celebrated so many of the same milestones; talking, walking, jumping, singing, climbing stairs, coloring a picture, etc. and I think about how some of these things have been entirely on her own timeline. Furthermore, there are still many milestones that I anticipate the big girls will reach but I’m unsure about whether or not KC will. I don’t know if she’ll get a drivers license and drive off in her first car or if she’ll have the opportunity to walk across a stage and accept a diploma as she moves on from there to her career. I know that none of these things are ways in which we measure success but some days  all of these thoughts turn into a really strange cycle in my mind of ,”Yes, I want to push her to accomplish anything and everything my other girls will.” but “No, those are not the things in life that matter and no one should be measured on these scales so why I would I push her towards these things if they don’t really matter?” but then again “I don’t want people to look at or treat her any differently because of a diagnosis. KC is awesome and amazing and should never be limited. She be given and challenged with all of the same opportunities.” and then I end with, “but I truly just want people to love and see the amazing girl she is. I just want others to be kind. I want to know there will always be someone there to help her. Maybe I can just keep her home and safe with me always and forever.”

Crazy mom talk, right? All of these conflicting thoughts and emotions all mixed into one. Then I think how truly amazing it is that I still have any friends left of only “typical” kids. I’m all over the place in my own mind. I know how clueless and ignorant I was about disability and everything surrounding it before I had KC and now that I’m forming my own thoughts and options from a whole other perspective that are so very conflicting some days, I wonder how can someone that doesn’t understand our life feel brave enough to be a friend to me. Yet somehow, by the grace of God, I have them. Now, there are people in our lives that seemed to disappear and move on around the same time frame as KCs dramatic birth story but those people are few. I should add that really, greatly appreciate having those fellow moms that have similar stories that really understand me like no one else but to be honest, I’m moved at the thought that I have close friends that don’t understand. They don’t always know what the proper/non-offensive, people first “thing” is to say. They don’t know what its like to juggle therapies and appointments. They’ve have never had to watch their kid fight for life in a NICU or again later through open heart surgery. Some of these friends I’m even lucky enough to call family. These people inspire me. I think about how much easier it would’ve been to disappear on those hard days for fear or saying the wrong thing. I think about the times that KC was on lock down because her immunities were so low and how so very easy it would’ve been to just fade away and go on with their own life until things became more stable with us but they didn’t. I wonder what I would’ve done if the tables were turned. I think its really inspiring that people decided to love us right through our hard days. The love and support was not motivated by their understanding of our experience. They chose to be a faithful friends and were willing to risk doing or saying the wrong thing in the name of lack of experience because they decided it was better than doing nothing.

Thank you to those friends/family that navigate though our amazing, new normal every step of the way.

I know you saw the part about the give away, right? Because some days being a mom is hard and for those of us with a little one that requires a little extra, we would really love to gift one of you with a $25 gift card to heaven…ok kidding, its to Target which basically a little piece of heaven on earth!

***So, head over to our FB page, watch the link and be inspired by Rachel and then tag a parent you know that is raising someone with a disability that is totally rocking it and deserves this gift card. We will randomly select one winner for the gift card.***

I adore this little ball of sass and all of the wonderful things she teaches me.

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Future Looks Bright…

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In the early stages of receiving KC’s diagnosis, I think a difficult piece to process was feeling like she’d lost her independence particularly in her adulthood. We now pictured her adulthood looking exactly like our lives looked rather than it being her own. Surely she’d finish some form of schooling but then we’d just be taking care for her for the rest of our lives. Maybe occasionally we would travel or something and her sisters would then take a turn looking out for her but I wasn’t able to picture her having a say so and a complete life of her own.
Y’all know we have ALWAYS loved her with our whole hearts – all 47 chromosomes included – but I’ll be real and say this thought was a little discouraging. I felt like down syndrome had stolen her future before it even began.
After KC was born and we’ve been given this incredible opportunity to watch her develop and grow into her own little person it really became abundantly clear that the limits put on her future came from my own ignorance about her diagnosis.
Maybe she will go to college, start her own business, teach in a classroom, become an actress, live on her own, fall in love and get married or maybe she’ll do a thousand other things entirely different than anything I just named. Maybe she’ll even choose to just stay home. My point is that she has an endless list of opportunities awaiting her and she shows me every single day how truly capable she is. Some might even say she just enjoys proving me wrong. ☺️

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While the lives of 6 young adults can’t speak for an entire community of individuals, it can paint a really promising picture for our future. Down syndrome is not at all what I thought it was going to be and I think if you watched this show you’ll find yourself delighted as well. Whether you know someone with Down syndrome personally or just our KC from this page, Born This Way on A&E will help you appreciate that just like you and I, people with an extra chromosome have the same hopes, desires, dreams and goals as any other young adult. The show doesn’t make Down syndrome appear falsely perfect. Life in general is anything but perfect for all of us. And just like anyone else is capable of experiencing these things, you’ll see some of the struggles with self acceptance, relationships, careers and even the process of learning to let go as a parent and allowing your children to figure out life as a young, independent adult. My heart is encouraged for KCs future each and every time I watch. And I want to be clear, the individuals on this show encourage me greatly but equally as encouraging is watching the interactions between their family and other “typical” peers they encountered each day. Inclusion and acceptance are beautiful things to watch. It’s so important for us to see beyond a diagnosis and see the individual right in fronts of us. We would love for you to watch and be encouraged with along with us on Tuesday, July 26th on A&E. Let us know what you think!
Also, for parents of those with a little with an extra chromie, check out last weeks post for my interview with one of the cast members parents. Its full of great insight and resources!

BORN THIS WAY Interview

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So, about a week ago we were presented with a really neat opportunity to have an exclusive interview with Sean’s mom, Sandra, from A&E’s BORN THIS WAY. Have y’all watched the show yet? Its awesome. I was most excited about the opportunity to hear the perspective of a more experienced parent but the perk of this being someone we get to watch on TV in just a week made it even more fun. Sandra provided a lot of great answers and resources and I’m thrilled to share below.

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Here is our interview:

  • We are currently beginning to make decisions about pre-school for our daughter, Kennedy. Understanding that all kids are different, did you choose specialized schooling or inclusive schooling in a “typical” classroom environment for your son and what was your reason for this choice?

—When Sean was in preschool ‘inclusion’ through the school district wasn’t available, and services (speech, OT, PT) weren’t available if you didn’t attend…so we did both. We had Sean in district special ed preschool in the mornings, and then 2 afternoons as week he was in a regular preschool. TODAY you can have inclusive preschool thanks to the new clarifications in the law…so go for inclusion! Our kids imitate their peers…and watching the typical kids go to the potty, listening to them talk, learning to take turns and play were all valuable social skills that go far in life.

  • Looking back now, how, if at all would change the school experience?

—I wouldn’t change a thing about elementary school. It was textbook perfect. High school…If I had it to do over I would have sent Sean to another school in our district that was more inclusive-minded and didn’t limit their students with disabilities like the one Sean attended did.

  • What method or resource have you found to be most successful in educating peers who may need some help becoming more understanding and/or more accepting of Down syndrome?

–We created a book (on the computer, very primitive) that introduced Sean to his peers. The teacher read the book to the class, then sent a copy home for their parents to read to them one more time…we included a fact sheet on inclusion and on Down syndrome, so their parents learned too. Here’s a template that we encourage others to use to make their own books— http://outskirtspress.com/webpage?isbn=9781478729570

  • When I consider the transition from high school to adult life beginning, I often worry about Kennedy feeling left out or left behind as her friends and siblings start to move out and into collage and careers. Did you experience any difficulty with this? What is your best advice for making this transition smooth?

—SAVE FOR COLLEGE and send her too! There are so many programs now. www.thinkcollege.net

This was the hardest part because the majority of Sean’s ‘typical’ friends went away to college. And they are just now graduating and not all are moving back here. We did create a social group of Sean’s peers who have a variety of disabilities and they get together weekly. That made a huge difference in keeping Sean socially active.

  • I read that Sean attends a community college. Do yours and Sean’s opinions and goals for him attending college align?

–I try to let him select the classes he wants.He’s not working towards a certificate or to transfer, so we look at the schedule each semester and he picks what interests him. He has had many acting classes. He took a pre-requisite to the cooking classes. Golf , bowling, weight training, and is enrolled in Tennis for the fall. I do my best to not tell him what to do…and he doesn’t listen to me even if I do.

 

  • Before Kennedy was born, as parents newly receiving a diagnosis, we often pictured future us caring for an adult rather than being empty nesters who were downsizing and traveling, etc. As I see this unnecessary limit that I was placing on my daughter, I wonder what you would say is your son’s biggest accomplishment in gaining his independence as an adult.

—Confidence in his abilities is his biggest accomplishment. Believing in himself, that’s the key to happiness and independence. I had to believe in him for him to believe in himself.

Thank you

Sandra

 

Loving heart parents through their child’s open heart surgery. 

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I always enjoy reflecting on life at this time in our lives from 2014. I like to remember where we were and just think on how far God has carried us. KC was so sick and to make it worse we didn’t understand why. We were preparing for her to have open heart surgery in the hopes that surgery would at least help her suffering heart while the experts tried their very best to understand the cause of her lung issues.
I’ve shared about heart surgery and the absolute blessing in disguise that turned out to be but I’ve not shared many glimpses into the life of a heart parent in the months leading up to her surgery day. I’ve not shared what life looked like facing a scary surgery with a fragile kid.
We’d already missed out on her first scheduled surgery date because KC was so sick so the goal was to do everything we could to get and then keep her well. We are abundantly blessed with amazing family and friends and at the time it was hard to process and pinpoint needs but I think this is why reflection is so important.

From our side of things;

We took turns going out to public places so that we didn’t risk her picking up anyone’s germs. That means I went no where during work hours in the week other doctor appointments, picking up my oldest from school and occasionally I moved KCs oxygen tubing to the tank in the front of the house so we could sit on a blanket in the yard for fresh air.
We took turns taking our older kids to church on Sunday but limited most other public contact with others to minimize germ exposure. I’d never thought I could’ve missed eating in a public restaurant with my family as much as I did. We even missed extended family birthday parties and I felt completely isolated some days.

There were LOTS of sleepless nights involved. We would sometimes take turns sleeping in a twin bed in KCs room because her monitor would have especially noisy nights. Chances were it was just a bad connection on those noisier nights but your daughters ability to breath isn’t something you’re willing to chance. So awake one of us would lie in bed watching her monitor and her face for signs of distress. I often tried to stay awake until it beeped so I could quickly fix the cause and then I’d plan to try and get a stretch of sleep in which also resulted in a lot of sleepless time staring at a machine. This doesn’t include the restlessness that comes from knowing what your child will be facing.
Our other two kids, both under 5 at the time, knew what it meant when I asked what the monitor says KCs sats are. They understood where the normal range should be and when she was too low. We did our best to hide our fears and worries from their little minds but there were days that it was just plain hard. They knew what a nasal cannula was and probably how to tape it to KCs face. They definitely knew how to secure a pulse ox onto her toe. They knew far more medical terms and equipment names than I picture most average adults knowing.
KCs cardiologist and pediatrician were on speed dial. Thankfully they were incredible support throughout the entire process but I think most people would agree that those aren’t two people you want to be so dependent on and speaking to on a daily basis in regards to your baby. You want to be conversing with family and friends and scheduling play dates and strolling through a park or a Target wasting an hour before dinner time.
I say all of this not because I want anyone to feel sorry for us or any family battling CHD. I say it because I know it’s not the norm and people don’t just instinctively know what’s going on with a family dealing with CHD or how to help and I want to share my experience so others will know. These are things that were done for us that meant the world.
Bring them a meal and don’t bring your kids with you to drop it off. Not even your healthy kids. If you have to, drop the meal at the door for them or order something to be delivered. You might have to be pushy about them letting you help but It will mean so much to family feeling alone or isolated to know that you’re thinking of them. At very least, tell them you’re picking up some groceries. You can never go wrong with milk, fruit, toilet paper and few snacks. My dad always showed up with the best groceries on the weekend.
Send them a letter. I don’t mean an email or a message on social media. Mail them an actual letter or card that they can open and hold and touch and maybe even hang in their kids room or later in the hospital room. Not only does that remove some feelings of loneliness, mail is like finding a little surprise. It’s a change or a smile even in an otherwise typical day.
Send them a text or message or encouraging note that doesn’t need a reply. Maybe even tell them not to reply. Just let them know that they are on your mind or in your prayers and leave it at that. Sometimes the constant questions and reiterating of the issue going on is discouraging. I found comfort in those random reminders that KCs creator has already gone before her. My heart is completely overwhelmed with gratitude even today on my Timehop when I read through all of the many posts from people all over praying for our girl and our family who is carrying this weight with us and for every single medical personnel that would come in contact with KC.
Drop off a hospital care package for the upcoming surgery day. Fill a bag with snacks or magazines or anything that you think might be useful for a hospital stay. One of my friends dropped off a hand made banner with KCs name all over it and each section of the banner was filled in with an encouraging Bible verse. Some of the parents of our kids at church let their kids each pick out a small item for KC or her sisters for after surgery. Nothing was crazy expensive but it was all so touching to see how much even their young children cared for all of us.
Last, if someone decides to open up and share with you about how they might be feeling or the concerns they have leading up to this surgery day, don’t minimize it. If you don’t know what to say, that’s ok. Just don’t tell them, “it’s all ok.” Let them be sad. Let them be scared. Let them know it’s ok to feel this way. Remind them you are there to support them in any way and remind them how much you love them. Remind them how much God loves them. But don’t make them pretend like everything is ok. Let them feel what they are feeling. Just don’t make them feel it alone.
Thank you is not enough to express our gratitude to all of those that loved and supported us during this time. We are richly blessed by your love and care. In turn, you have made it my passion to serve and love others going facing the same CHD battle as us.

Philippians 4:19

But my God shall supply all your need according to his riches in glory by Christ Jesus.