"What the enemy intended for bad, I used for good Maria."
Our Father is so tender in His words, and so specific about the details of what He speaks into our hearts. Sometimes the gravity of the last couple of years hit my heart hard, sending my heart spinning and in a state of feeling completely overwhelmed. Both the gravity of the beyond hard of the cancer journey, and the miraculous redemptive story that is weaved within leave my heart sometimes in a million pieces while simultaneously wanting me to scream from the mountain top that I am a loved and cherished child of God. This month marks the one year mark of there being "no evidence of cancer" found on any MRI or spinal tap. Tomorrow is Jax's next MRI and spinal tap.
The last 24 hours have brought back to my heart the sights, sounds, and smells of the ER room, the oncology floor, and the oncology clinic. I've felt my heart rate increase and my heart literally hurt, the PTSD of all that we've walked being real and present. I haven't held back but have allowed my heart, spirit and body to remember. It's a sacred privilege to remember. Holding my son as big IV machines run drugs that have both the potential of saving and taking his life is an experience that words can never adequately describe. Holding my son as his body heaves and experiences deep pain as a result of the drugs I choose to give him to save his life are moments that will forever be etched in my heart. Napping and cuddling his tender body that simply once again doesn't even have energy to play is an experience that parents should not have to walk out. Driving up to the ER with my sons high fevered body, praying and begging Jesus to intervene are moments that if I allow them, end in moments of tears. So many sacred and holy moments, moments where we got to bear witness to the suffering of our precious jewel.
Yet in the midst of my tears of grief and trauma, there is also the deep indescribable joy and peace. God met me in the depths of my pain, of my trauma, of my too hard. He not only met me, but He carried me and held me. When I thought I couldn't go on, He gave me the strength to do just that. When I didn't think I could do one more hospital stay, one more chemo, one more shot, one more Hickman port cleaning, one more, one more, one more ... He gave me the strength to do just that. Jesus became my very breath, my Abba Father.
There have been comments and questions made by people about Jax that elude to Jax being broken or there being something wrong with Jax. We don't see it that way. Yes, Jax does not have any vision and yes Jax does not have eyes. However Jax's blindness is just one part of who he is, it does not define him. In our hearts he is Jax ... funny, articulate, loving, affectionate, fun, smart, thoughtful, playful, kind, helpful, curious, eager, energetic, calm. Within our home, Jax's blindness is a non-issue. The character traits of who Jax is define him more than his blindness does. I do believe that anyone who has had the privilege of spending real time with Jax fully understand the depth and beauty of who Jax is, and truly how secondary the fact that Jax is blind is. In actuality, in my son I see an ability to see more than most people with vision. Jax is wise beyond years and has the ability to see into the hearts of people that often catches my heart by surprise.
People ask often how Jax is doing. Jax is doing SOOOOO GOOOD. Jax is a happy, active and full of LIFE four year old. Aside from his lack of vision, Jax bears no evidence of having had cancer physically, emotionally or spiritually. His worries do increase with upcoming appointments or procedures, but with lots of nurture and some structure, Jax is learning to navigate these. I can't remember even the last time Jax was sick, I think it was last February.
Jax (and Jewlia) are both attending a local specialized preschool, where Jax is beginning to learn Braille as well as other vision mobility skills that will set him up for life. Last spring we tangibly and literally explored moving to AZ as there is a nationally recognized blind school there, the area being saturated with lots of programs already in place for Jax. At the end of this literal journey to AZ, through the valleys there, we came to a place of peace of staying where we are at. We however walk forward being open to anywhere or anything God might call us to, regarding Jax, and our entire family. While laying in the hospital bed with Jax God did whisper seeds of change into both Sam and I, and we are seeking clarity on what this looks like for our family.
We have been gifted an incredible boy, a very special and precious jewel. To think that 2 1/2 years ago I did not know him is honestly crazy to comprehend. To think that when God first asked me to adopt him I said no is honestly mind blowing to comprehend. To think that I could have missed being the forever mom to Jax makes me get on my knees in praise and worship of my Father who pursued us, who called us, and somehow deemed us worthy to be Jax's forever parents. To think that so many jewels are right now waiting for forever families, most never getting the chance to be adopted is heart crushing. Adoption is in essence the nature of the gospel, why would we then not also adopt.
We don't know what Jax's future holds, nor do I need to know. Every time we have a doctor's appointment we get statistics told to us, how Jax's cancer is 9X more aggressive than typical for his cancer, and how his chance of having cancer come back in another form is extremely high. My confidence however is not in the doctors, instead it is in my good good Father.
One year and 3 months ago I was forced to look eternity straight in the eyes as the doctors were telling us that we needed to prepare for "end of life." In those few days of waiting for more tests my perspective got clearer as my focus on Heaven became my very breath. Jesus reminded me that life is short and that none of us know when our last day here on this earth will be, and that the only life I wanted to live was one that was totally surrendered to Him.
So for today I count my blessings. I don't say that loosely, I mean that to the core of who I am. I have been richly blessed, today, throughout the last couple of years, and throughout my life. The blessings are too many to count, some of which are 9 incredible precious jewels. And for every moment and every day that I get the sacred privilege of being their mamma on this side of eternity, I will be forever thankful. I consider it PURE JOY.
People ask often how Jax is doing. Jax is doing SOOOOO GOOOD. Jax is a happy, active and full of LIFE four year old. Aside from his lack of vision, Jax bears no evidence of having had cancer physically, emotionally or spiritually. His worries do increase with upcoming appointments or procedures, but with lots of nurture and some structure, Jax is learning to navigate these. I can't remember even the last time Jax was sick, I think it was last February.
Jax (and Jewlia) are both attending a local specialized preschool, where Jax is beginning to learn Braille as well as other vision mobility skills that will set him up for life. Last spring we tangibly and literally explored moving to AZ as there is a nationally recognized blind school there, the area being saturated with lots of programs already in place for Jax. At the end of this literal journey to AZ, through the valleys there, we came to a place of peace of staying where we are at. We however walk forward being open to anywhere or anything God might call us to, regarding Jax, and our entire family. While laying in the hospital bed with Jax God did whisper seeds of change into both Sam and I, and we are seeking clarity on what this looks like for our family.
We have been gifted an incredible boy, a very special and precious jewel. To think that 2 1/2 years ago I did not know him is honestly crazy to comprehend. To think that when God first asked me to adopt him I said no is honestly mind blowing to comprehend. To think that I could have missed being the forever mom to Jax makes me get on my knees in praise and worship of my Father who pursued us, who called us, and somehow deemed us worthy to be Jax's forever parents. To think that so many jewels are right now waiting for forever families, most never getting the chance to be adopted is heart crushing. Adoption is in essence the nature of the gospel, why would we then not also adopt.
We don't know what Jax's future holds, nor do I need to know. Every time we have a doctor's appointment we get statistics told to us, how Jax's cancer is 9X more aggressive than typical for his cancer, and how his chance of having cancer come back in another form is extremely high. My confidence however is not in the doctors, instead it is in my good good Father.
One year and 3 months ago I was forced to look eternity straight in the eyes as the doctors were telling us that we needed to prepare for "end of life." In those few days of waiting for more tests my perspective got clearer as my focus on Heaven became my very breath. Jesus reminded me that life is short and that none of us know when our last day here on this earth will be, and that the only life I wanted to live was one that was totally surrendered to Him.
So for today I count my blessings. I don't say that loosely, I mean that to the core of who I am. I have been richly blessed, today, throughout the last couple of years, and throughout my life. The blessings are too many to count, some of which are 9 incredible precious jewels. And for every moment and every day that I get the sacred privilege of being their mamma on this side of eternity, I will be forever thankful. I consider it PURE JOY.
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