In Case You were Wondering

I have never ever missed someone as badly as I miss Jaxson. I would always tell him, “Mommy loves you so so much.” But with him being physically gone, I have realized that I love him much much more than I could ever imagine. January 13th will forever be a day that’s etched in my mind. A day where the decision was made to let him go, a day where he was surrounded by love..lots of love, a day where until his last breathe, he was told how happy he made us and how proud we are to be his parents. One of the last memories I have of him is once the tube was out,he smiled big, so big he showed all of his teeth. He also said,( what I’m convinced is one of his favorite words) “Momma.” Even at the end he fought, shocked the Doctors one last time..but that is Jax for ya, doing things on his time and not anyone elses. I will always remember me holding you, singing “You are My Sunshine ” in your ear, and telling you that it was okay for you to go. Telling you Mommy and Daddy would miss you so much but we would be okay. I asked him if he would watch over us and I got a nod from him.💙 Which is just what I needed. The world should have stopped once you left because I know mine did.

In case you were wondering, I’m not upset with God. Never have I once questioned him, maybe it is because I understand. I understand that Jaxson’s time here on earth was up, I understand that his mission here was completed, I understand that he is now fulfilling other missions in Heaven. Jaxson did far more in 6 years than I have done in 30. My main goal was to always make sure Jaxson had happy days and always understood that he could do any and everything he wanted to. I always wanted him to know that taking medicine was his normal, and once he saw other kids not carrying a bag that it meant no difference. I always knew Jax was strong, he always proved to be stronger than we could ever imagine. He has been on Ecmo twice, had an Lvad (left ventricular assistant device) ,had 2 Heart Transplants,he was on Plasmapheresis (the removal, treatment, and return or exchange of blood plasma or components thereof from and to the blood) , CVVH (temporary treatment for patients with acute renal failure who are unable to tolerate hemodialysis and are unstable), Peritoneal Dialysis ( essentially the same as CVVH), Countless Brociacs, Arterial Lines, Picc lines,tons of PIVs and countless blood transfusions. He also received medication around the clock,years of receiving shots twice a day which left him bruised, was fed via NG tube to gtube to gjtube. Jax….through all of that, always had the biggest smile on his face and rarely complained. He is in fact a superhero, because I know, or feel that I would’ve complained about everything. It was alot and he took it like a champ, he was always more focused on asking for Sprite, water,McDonalds, chicken spaghetti, or a cookie that he would kick to death😊.

In case you were wondering, I do not know how I am feeling the majority of the time. So when people say it’s okay to feel how you feel….ummm I know but I do not know what it is. I miss him that’s forsure. I am angry, but not with anyone or God. It’s like this feeling of being overwhelmed, on edge and then bam,I feel as if i am going to explode. I feel Jax still with me but my days,weeks,months, even down to the second , always revolved around him. So now what do I do? Sometimes I tell people I am Okay, because sometimes that stops the questions or because sometimes when I say no it is followed by a question like “Well how DO you really feel?! Well dangit I don’t know. Some days for maybe a good 4 hours I wake up and feel like a champ and then there are some days I wake up crying. When Jax completed his mission I felt something that at first I thought was him leaving, but now with this peace I have about him not physically being here, I think it was a peace of him staying with me.

It is okay to not be okay, it is more than okay to take your time, it is okay to feel….weird(which is how I explain how I am feeling). Jax has taught me to say what’s on your mind, go for what you want, and that if you change your mind, it’s okay. That saying No is empowering ( empowering to me because I love to please people, sometimes at the expense of my own feelings, but not anymore) He has taught me to find happiness in the most unlikely, sometimes painful situations. He taught me that you control how your day goes. Jaxson, mommy could go on and on about how much you have not only taught me but others as well.

Grieving is really something strange lol. One day your fine, another day you are crying your eyes out, one day you do not want to be bothered, and some days you are on edge to a point you are thinking “If one more person says one more thing crazy to me I am going to lose it.” Grieving Jax, was not something I was prepared for. This is something you have to take day by day and there is absolutely nothing wrong with not knowing how you’re going to tackle each day. Do Not feel bad for how YOU feel, do not compare yourself to how others grieve or have grieved. It is okay to ask questions but do not feel obligated to do exactly as the answer you were given. I am trying my best and that is all I know how to do. I talk to God because I know he will not judge me or steer me in a direction that I may not need to go. In case you were wondering, The amount of love I have received is amazing. People I have never met before have reached out, sending me messages and prayers, His Care team making sure I am okay, as well as Close family and friends.You guys are the best, the absolute best. To every comment, share, like or anything involving sharing Jaxson’s handsome face, around Thank you. Thank you for seeing how Amazing our little boy was and still is.

Until Next Time Friends, Be Kind to One Another🌻


9 thoughts on “In Case You were Wondering

  1. Kandiss, you and Jax are my heroes. I’ve never witnessed so much love and strength in my life. I Know that Jax is in heaven looking down, watching you and making sure his mom is always alright.I also know that you are a powerful and magnificent woman that can conquer anything. You are everything I want to be as a mother. Thank you for showing me how to be a bad ass and thank you for continuing to keep everyone updated on your journey.

    Liked by 1 person

  2. I’m sitting here literally sobbing reading this. Your sweet Jaxson was one in million and he made a difference in the lives of people all over the world. You are the strongest mommy and you are right, “It is okay to not be okay”. I love you dearly and I’m amways here for you!

    Liked by 1 person

  3. I have followed your story since I started working with Charanda. I have prayed too many prayers for Jaxson and your family to count. He is one of God ‘s Angels now and is continuing to watch over you. I will continue to pray to help ease the pain. You have to believe that God needed his super hero self for a very special mission. Know he is alright and all that have passed before us were there to greet him. He is in the hands of some awesome souls. Keep doing your writing, it will help keep you connected. God Bless,
    Darlene Durham

    Liked by 2 people

  4. You’re an incredible mama! You have so much love inside you and it spills out. You are loved and appreciated. You can feel or not feel. Take your time. Thank you for being open! God is with you. Love, AJ

    Liked by 1 person

  5. I am over here sobbing because everything you are doing and saying is tremendous. You are such a good mommy and Jaxson is and always will be your angel. I’m so sorry for your loss but I will continue praying for healing and peace

    Liked by 1 person

  6. Wow! You are so awesome! Thank you for letting all of us into your life and love Jaxson. He was and still is a beautiful angel. Praying for your strength.

    Liked by 2 people

  7. I am in tears as someone just sent your blog to me and every word you wrote is my story. My only child who had a one in a million rare genetic disorder called Mucolipidosis just passed on January 1st. He was my entire world, my every day, my life, my job, my baby and when I say baby I mean it quite literally as he was 18 but the size of a two year old. He did not learn to walk until he was 3 but then after losing so much bone density due to the severity of his disease he broke both of his hips at age 8 and then 10 and was forced into a wheelchair and never walked again. He was never able to do any self care due to severe bone deformities so he was very much my forever baby but he was cognitively aware of everything and like you speak of your son, achieved more than I have in my 45 years! He changed the way the NIH viewed rare diseases and how they and dr.s And researchers worked together by going in front of a panel when he was just 6! He just had a flag flown over the U.S. Capital in his memory in the 17th! I am so lost as to how to feel and what to do with my everyday. I am not angry, I know he is no longer in pain and that gives me peace but my heart is just missing him terribly and I am just lost emotionally without him. ~Zachiesmom

    Liked by 2 people

    1. Oh love ,my condolences to you and I truly mean that. Losing a child is a feeling that is unexplainable at times. My son also didnt kearn how to walk until he was 3. It is okay ro not feel anything…it is. Our heart will always miss our boys but we have to try and remember that they are still with us. If you would like to message or call me anytime feel free to do so. I’m so so sorry about Zach..I really am. But isn’t it amazing how our sons changed things. Changed how people perceive different medical diagnoses and things withing themselves 😉love you . I’m always here 9037336557

      Liked by 1 person

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