A year since Ryder's Diagnosis...A Post from this Momma's Heart

          It has been a year since our sweet Ryder was diagnosed with a Congenital Heart Defect and almost a year since his heart surgery. Now a year later our family has been super busy out telling our story and raising awareness for Ryder's condition. When I think about the fact that if this was not detected a year ago and that their is a chance Ryder may not be here today if it was not caught I can't help but want to yell to the mountaintops to all families and parents to be aware of this condition and make sure your pediatrician is checking your child's blood pressure at check ups. If they do not... just ask and they will. Heart disease is real and is a silent killer to so many. One night when I was at Arkansas Children's Hospital laying next to Ryder watching him sleep restlessly I prayed to God to please please help our baby and I made a pact with him that I would do all in my power to make a difference and raise awareness. I knew God was working in me through the entire process. Many people have ask me how was I so calm during it all...my answer is by the Grace of God! He carried our family through it and I believe he did to be able to do the things we are now.
   Last week we went to a style show practice for a style show for the Go Red for Women luncheon. At that practice, Ryder ran up to say hi to a young boy he did not even know named Ryley. He was chatting Ryley up in regular Ryder fashion. Tears began streaming. I knew Ryley's story and I knew Ryder's and to see them together...2 Walking Miracles! Ryley had a massive stroke on July 8, 2013 at football practice. Ryley is such an inspiration. He walked the runway last week at the Go Red Event with his precious dog and truly chills came over me. We also met several other beautiful people that had heart transplants and it was just amazing to see how well all of these people are doing. Everyone has their story and their WHY and it was a beautiful experience to see all of them together.

      On Thursday of last week our family was invited to Sonora Middle School in Springdale, AR for a Valentine Program that the school dedicated to Ryder. Ryder told his story to over 800 students and teachers and then the choir sang a beautiful song to Ryder. After the program Channel 5 News interviewed Ryder and our family and it aired last week. If you have not seen it go to: http://5newsonline.com/2015/02/12/5-year-old-boy-living-with-congenital-heart-disease-honored-at-local-school/  A special thanks to our friend and principal of Sonora, Shawna Lyons for inviting us and making it a special day we will never forget. Also Peekaboo Magazine was so precious to ask me to share our story which you can read online: www.peekaboonwa.com


    As I look at the picture below of Ryder last year at this time and all of the unknowns about his condition and about Cardiac problems in general and look at what all we are doing with it now, I cry Happy Happy Tears that God has helped me keep my promise I made to him that late night in the hospital last February. God is Faithful and He is Determined! Today I ask that you take a moment out of your day to pray for someone you know with Heart Disease. It is real and without Amazing Doctors and the support and research from the American Heart Association I just do not know where we would be today. I leave you with these photos and our video of our story on YouTube. God Bless and thank you for taking the time to read.

  If you have not seen our story on You Tube, please take time to watch and share it with someone today....awareness is key!!! http://nwaheartball.heart.org/roarkboys

All my blessings,
Casey

Please Take Time to Read this Post

     Dear Friends and Family,

               It has been a while since I have posted anything and we have had some exciting news. We were recently ask to be the Survivor Family to be honored at Northwest Arkansas Heart Ball this year. All the money raised goes to the American Heart Association. It brings tears to my eyes to think we get the opportunity to help give back to an Awesome Community and to such an Amazing Organization. We have always been supporters of the American Heart Association and all those years never did it enter my mind that we would actually be the ones that would be on the other end benefiting from the medical equipment that this Association helps facilitate in Doctor's offices and Hospitals. We were ask as a family because it was not just Ryder's journey, this was a family journey and we were all one another's rock during the scariest time of our lives. Ryder's twin brother was greatly affected by it and is Ryder Jack's Biggest Fan. Not a day goes by that I do not look at Ryder's scar and smile and it brings tears because that scar is etched in all four of us not just Ryder.
       I understand that there are tons of organizations that raise money and are doing amazing things but for a moment I want you to think of who in your life has been affected by Heart Disease? Stroke? Just think of those individuals that you adore so much...The money raised is helping people just like them. As I put in the following story that hopefully you will take time to read below, it was because of money raised by individuals like you that the blood pressure machine was in our Doctor's office which helped save Ryder's life. http://nwaheartball.ahaevents.org/roarkboys

Prayer Warriors Needed for the Shofner Family

Dear Prayer Warriors....I found out in the last several hours that another child in our community has been diagnosed with the same condition as Ryder. His name is Jett and he is 5 years old. He was diagnosed yesterday and it was found once again by Dr. Averitt by doing a routine blood pressure check up. Thanks be to God this has been caught...however this family has a difficult road ahead of them and needs all the prayers they can get, however they have had quite a journey in their lives already. Would you take the time to read this post from the Aunt of Jett. Lets pray together for Jett and his precious family. We prayed this morning for him and Ryder said, "Mom I can go with him to Children's Hospital and hold his hand." heart melted.... I am very thankful our paths have crossed so this family knows they are not alone. Would you pray Jeremiah 30:16 with me for this precious boy.

Blessings and Love,

Casey

Friday, October 10, 2014

Day 10: Painful Post

Click here to see all the posts in this 31 day series

Day 10

I’m placing this in the top two hardest posts I've ever written. Never mind…this is the hardest one ever. I’ve only had six-ish hours to process the news we received this afternoon. Typically when I get hard news I process if for several days or weeks with God and by then I have a much better planned-out post to publish. 

I don’t have that luxury tonight. I knew this 31 day writing thing was an act of obedience and it has already been a blessing, but that means I write even when it’s hard.

I prayed before writing this tonight that it will help spread the word and save lives. 

I love this sweet family so much it hurts. Please pray continually.

My precious sister, Becky, took in her 5 year old son last week for a routine appointment at Best Start Pediatric Clinic. Dr. Averitt could not find a pulse in his legs and immediately scheduled his appointment he had today with Arkansas Children’s Hospital branch in the nearby city of Lowell.

Those of you who have followed our story for several years now know that the first time Becky was pregnant, and I was pregnant with my second child, my husband passed away in a car accident. Becky and her husband Travis were so crucial to my process of healing in the tragedy. The second time Becky was pregnant her husband had heart issues and underwent surgery. She is currently pregnant for the third time, due in December, and her son is facing surgery around that time for a narrowed aorta, “coarctation of the aorta." From my limited understanding, it is not standard procedure for young children to have their blood pressure checked, but this simple act saves lives.

Northwest Arkansas is a small world, as most close-knit communities are. Almost immediately we heard from our friend of a local family that just went through the exact same condition in her son. She shares their family’s story on her blog as well.  (Note: Remember a couple of days ago I mentioned being wise about what you read. If reading details about their situation would cause extra anxiety then maybe save reading their story for a later time. I include it in this post so more people can become aware of the necessity of blood pressure checks in children and to share this wonderful, local, success story of their sweet son.)

Those are the facts.

What I am feeling, however, has swung the pendulum from devastation to peace and everywhere in between. I know from experience you just have to take it minute to minute for a while, and then God’s peace prevails and you will be able to take it hour by hour. But only one day at a time for sure.

This is where we put what we have learned to work for us. We are surrounded by a community of prayer warriors who've battled shoulder to shoulder with us. We will rely on God for strength and peace that surpasses all understanding that comes from continual prayers.

We have learned over the years that it's okay to have all kinds of feelings, God created us to have feelings. I have identified with David in Psalms over and over again, but it's good to be reminded of the Truth and God's promises to provide so we do not let those hard feelings trap us into a pit. God can definitely handle all of our feelings no matter how ugly.  PTSD is a real condition and it helps tremendously to have coping strategies in place BEFORE a trial hits. I know that for me I tend to get mad at God and question why He created a world like this. Some days I can be at peace with the answer that “his ways are not our ways” and then other times I don’t find peace at all with that but I stumble along until someone can help remind me how He has ALWAYS provided in the past.

I know I am making imperfect progress because I can be mad about that answer-that's-not-really-an-answer and still remember His promises are true. A few years ago, I could not do that. I couldn’t remember or even tell you what those promises were. 

Since this summer I have been relying and reciting His promises so often that they come to mind much more quickly than ever before. I’ve told you in this 31 day series that I do not believe in coincidences anymore and I have tears streaming as I just realized what I had originally planned on posting today is just below this paragraph. I had opened this saved document from yesterday and started typing above the words already there, not even reading what it was I had written yesterday, just noticing it being bumped down the page as I typed…until I finished typing the last paragraph above. Y’all. Read those verses below with new, fresh eyes. I can barely stand it. Do you see how He loves us, so? Becky, of all the verses in the whole bible the one from Romans, penned thousands of years ago, was typed out by God for you yesterday on this page because God knew then what would happen today. And even though I still find it so freaking frustrating that He knew this pain was coming, He is showing His love and compassion for us, For Such a Time as This.

 “Meanwhile, the moment we get tired in the waiting, God’s Spirit is right alongside helping us along. If we don’t know how or what to pray, it doesn’t matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans. He knows us far better than we know ourselves, knows our pregnant condition, and keeps us present before God. That’s why we can be so sure that every detail in our lives of love for God is worked into something good.” Romans 8:26-28 msg

"Your word is a lamp to my feet and a light to my path." Psalm 119:105

God is alive and real today. What does that mean for you and your life? 

We love you, too, God.

Amen.

Lots of New Updates...and Updates on Kiss Kovers

 Wow....Been a long time since I have sat down to write on the blog but I have to say I have sincerely missed it. It is such great therapy. There were so many times while being in the hospital with Ryder that I could not speak but I could type. God just put the words through my hands. First and Foremost I want to let you all know that Ryder is doing really well. Our last visit with the doctor was good. His ECHO was not great but his blood pressures were good and he looked good.  He still takes medicine everyday to control his blood pressure and so far so good. We are just thankful this was all caught when it was so know we know when to go to the doctor and signs to look for.
 He is loving Soccer and so is Rowe. They are also enjoying their Pre-K class at First School this year. The boys turn 5 years old on September 29th and for their birthday they are collecting blankets for the children and families at Arkansas Children's Hospital. Ryder has another appointment early October so we will be delivering then. Many of you have asked when we were taking another load, so letting you all know. All of the blankets that everyone helped with in March and April are all gone. It is a huge need there so if you would like to help it would be so greatly appreciated.
 You all may remember about the sweet baby girl I wrote about that touched my heart while there and I found out yesterday that she went to be with Jesus. Oh that precious face, beautiful head of hair and always smiling! The blankets help a baby like that feel loved and feel peace and warmth. It broke my heart never seeing family come to see her but the nurses at Children's were her family and I cannot think of a better place for her to have felt so much love in her short life...and now she is not sick and dancing with the Angels.
The blankets also help the families that are there month after month have their own since of something that feels personal to them especially when they have come with just the clothes on their back and nothing to wear. Thanks to all that have followed us on our journey and I promise to write more on the blog and will definitely be updating you all after Ryder's next appointment. For now if you all would pray that he gets another good check up and that he continues to feel great.  Your prayers are beautiful blessings to us. Also you can email me at caseycroark@aol.com if you would like to donate a blanket. I leave you with one of my favorite verses...
                                         Do not be anxious about anything, but in every situation, by prayer
                                    and petition, with thanksgiving, present your requests to God. And the
                                     peace of God, which transcends all understanding, will guard your hearts
                                    and your minds in Christ Jesus.   - Philippians 4:6-7

                                                                                                                   Blessings,
                                                                                                                            Casey
                                                    

Ryder's First Day Back To School Video

                 3 weeks ago yesterday Ryder Jack had Heart Surgery at ACH. This is a video his teacher sent me yesterday of him breaking it down at school! Oh how this made my year to see this and to me it is just a Testimony to God and all His Glory in our journey. God placed brilliant Surgeons, Doctors and Nurses at ACH and we Thank God for them everyday! Thanks for all your Concern and Prayers for our boy. I will post pics and more details about our visit from our Appt. later, but for now enjoy this video and Happy Thursday!

Kiss Kover Update and the Kiss Cover Story

I am just so so Thankful for all of the donations of blankets for Kiss Kovers! You all have been so generous and I just can't thank you enough. I am still taking blankets and I will be happy to pick up from you as well so just let me know if you do not have time to drop off and I will come pick up.  I have had several people ask me what is the meaning of Kiss Kovers and what are they for? Before Ryder went to ACH, My Mom and the boys made the fleece tie blankets so that they would each have one and Mom told Ryder that everyone could kiss it before he went to surgery and it would bring him comfort, so both boys have called them Kiss Kovers since that time. During our stay in the hospital I noticed a HUGE need for blankets for parents and grandparents that stay for long periods of time in the hospital. The Hospital is great about passing out so many necessities and they do give you a blanket but it is a lightweight blanket and a comfy cuddly blanket is such a comfort. It is really cold in the hospital too and especially in the patient rooms so I just thought how nice a comfy blanket for all the sweet kiddos there as well....something that makes them think of something you would cuddle up on the sofa on at home. It is kind of like how some of us like to carry a pillow from our house when we travel because we sleep better and it brings comfort when in a strange place.... This is my point. So many of the parents come with nothing because they rode in the ambulance with their child or on the Angel Flight. Not only will these blankets be comfy but they also have one of our favorite verses on them to bring families comfort.
   One blanket that I can't wait to deliver is to a gorgeous baby that roomed next door to Ryder. I will need to keep her nameless but she is 5 months old and the most beautiful baby you have ever seen. Big Gorgeous Eyes and Hair that you can't imagine for 5 months old. I would just sit at her door at night and stare at her after Ry would fall asleep. I miss her, I can't wait to peek in on her next week. During our first few days I realized I never saw anyone in the room with her... She had lots of loving nurses but no family... I thought well surely as the weekend approaches family will roll in...I finally ask one of the nurses and no one had been to see her in 5 months. She had a surgery while we were there and no one was there for that. She has a trach that the vent is connected to and it appears she had Open Heart when she was itty bitty newborn. I certainly am not to judge any family, I have no idea what her family's situation is and I know that there are single parents out there that have to work and take care of other children. I just wish someone could have been there to kiss her forehead before her surgery and rub on her as she woke up.  I wake up in the middle of the night still thinking about her. When I would wake up at the hospital thinking about her I would go peek in and most of the time she was staring at the walls and smiling. At night sometimes in the hallway other parents and I would be crowded at the door wanting to get a peek and a smile from her. We would all just oooh and awe! She already has a big purpose- she is warming hearts that she does not even know. I know she is going to do something great in this world...like maybe be a heart doctor or a fabulous nurse that has shown her the most love in the beginning stages of her life..I just know she has a purpose and a story to tell. Thanks be to God for his indescribable gift  2 Corinthians 9:15. You are one Precious Gift Baby Girl and Jesus Loves You.  One thing is for sure...I can't get her Kiss Kover to her Fast Enough!
  Thanks again for your continued support and prayers!
Blessings,
Casey

Pray For Healing

                Good Morning. First and Foremost I want to thank you for your continued prayers for Ryder. He is doing great each day. It is amazing and it is because of your prayers. Both boys are definitely getting stir crazy in the house but we just can't be in public places and have Ryder exposed to sickness until we see our Doc at ACH. We can't go to Church and that is getting to me, I just love worship and I will be anxious to get back. I have several friends that need lots of prayers and I ask you to take time out of your day today and in the coming weeks to sit down and pray for these precious people that are going through a tough time right now and need Complete Healing that only God can give them. The link at the end of this blog is a song some of my friends, Ben and Noelle from ACH wrote and sang to us while there. I have downloaded it on ITunes and I listen to it several times a day and pray specifically for these people while I listen to it. I ask you to please do the same. Here are the people I need you all to pray for:

Meet Trevor Trumbo, A son of some friends of ours from Fayetteville that recently moved to Memphis. This little punkin was diagnosed with brain cancer last July. He underwent neurosurgery and two months of radiation. He was released in October and was doing so well and this last week he was admitted to the hospital and Doctors found another large tumor in his frontal lobe and smaller ones on the brain. He underwent a long brain surgery this past week. Now he will began Chemo for the Ependymona, which does not really have a cure and most things they are trying with the Chemo are still in trial. Please take time to pray for Trevor's Complete Healing. You may also get updates on Trevor's Caring Bridge Page. Keep his sweet parents, Lisa and Matt and his brothers Trenton and Hayes.

Meet my Beautiful Friend Katie B:

Katie is one of my beautiful friends from Texarkana but she is also a Chi O sister of mine. Katie is one of those people you just want to cling to because she has the most positive spirit and such an amazing sense of humor! A week ago Katie was admitted to the hospital with severe Kidney pain. Katie has already had two kidney transplants and is now in renal failure. She is on dialysis and now on a wait list for Kidney Transplant number 3. Katie is so thankful that the hospital board approved her for a 3rd transplant... this is a Huge Praise!!! Obviously a living donor would be best and the family is in prayer for that miracle to manifest itself if it is meant to be. Pray for Katie's complete healing! Pray for all of Katie's family as well.

 

Meet Truman Gist, Age 5

This past Monday afternoon, Truman's pediatrician called with news no physician wants to give and no parent wants to hear. Truman's lab work revealed an extraordinarily high white blood count and premature red blood cells, he suspected cancer. Tuesday morning Truman's parents took him to the oncologist expecting a round of tests and a "good" diagnosis. Instead, Truman was diagnosed with Acute Myeloid Leukemia. He was immediately admitted to the hospital and underwent his first round of chemotherapy. They also found cancer cells in his spinal fluid. They were told to expect to be in the hospital at least 6 weeks at a minimum possibly up to 6 months ( without ever stepping a toe outside). All of this being said it is a horrible diagnosis but Truman and his family Love the Lord and even a few days ago Truman woke up with sparkling eyes singing, "Bless the Lord oh my Soul"! When We Cry to the Lord, he hears us... He is our Ultimate Healer and Performs Miracles Every Single Day. I beg you all to pray for Truman and light a candle each day in his honor and Pray to God to Heal him! This little boy has lots left to do in this world! Truman has a caring bridge as well you may follow.

 

Meet My Miracle Girl Brandi

In late December Brandi was admitted to the hospital with H1N1 and Pnemonia, she has been at ACH where she was on the ECHMO Machine and this girl has fought so hard! She is making more and more progress everyday and was recently moved to the rehabilitation phase and is expected to be back home soon. She still has some milestones to complete before getting home but with your prayers I know this will happen very soon for her. Her baby boy Tag will be turning One this summer and we all know the kind of party she will be wanting to have for this punkin! Brandi is not only a dear friend of mine but also my neighbor.

Thank you for taking time to read my prayer requests and I ask you to listen to this link of this beautiful song Healing!

Blessings,

 Casey

https://itunes.apple.com/us/album/healing/id465221629?i=465221633