This post is very difficult for me to write. But it is part of my healing so here goes.
I was feeling so tired and so alone. I could not see light, I only saw darkness. I thought if this is it, if this is all there is I can just as well be dead. But if I'm dead what then? Where will I go? Will there be nothing? That can't be, there has to be something after death, but then there also has to be a God. And if there is a God then it is not as hopeless as I thought. And I could grasp and cling to that thought. I could see myself going on. That was the lowest point ever in my 37 years on earth.
What brought me to this point is a very long story. It started a little more than 14 years ago with the birth of my first born son.
I have always been a control freak, I like to plan and to feel in control of a situation.
For the past 14 years I have tried to be in control and on top of all my sons medical issues. I researched every new diagnosis so carefully that my husband started to refer to me as Dr Elsa. One of the major disorders Jacques was diagnosed with, I actually discovered while googling his symptoms. I have a big file (on Jacques) with all of the blood test results, the x-rays, the research and more. I would take the file with to every dr visit and admission. The drs actually loved this as it made their job easier.
Now, thinking back, the file was maybe not the best idea as I could see the file getting bigger, getting fuller and Jacques not getting better. His health was actually declining at an alarming rate.
This knowledge drove me to seek more options, more remedies and treatment options. And there was treatment options, very invasive, very traumatic treatments. And we tried them, Jacques went for 3 foot/knee operations, very painful operations. He also went for an emergency laparotomy. Unfortunately the incisional site herniated 4 times which they fixed 3 times with stitches only and finally the fourth time they fixed it with mesh. These were very invasive and very painful surgeries.
But still his health was declining. We saw a pulmonoligist who diagnosed him with severe obstructive sleep apnea and common variable immune deficiency. We tried a bi-pap machine for the sleep apnea but he could not tolerate it. So we switched to oxygen at night which he also has trouble tolerating. The treatment for the cvid involved admission for infusions with ivig. Jacques had an infusion every month for 18 months. This further added to his trauma.
At this stage (with the ivig infusions) Jacques was so traumatized that he would fight from start to finish. Myself and Johan had to physically restrain him which took a toll as Jacques was growing at an alarming rate and with this his physical strength as well.
Now to say Jacques is physically strong is un understatement. The fact that his body and internal organs are getting weaker does not mean that his physical strength is becoming less. In fact, with his growthspurts his strength is also growing. Jacques towers over me, he is about 10cm taller than me already. I cannot "get him to do anything". If he doesnt want to do something I am not going to be able to make him. If he wants to go into the kitchen (or any room) he will go through me. And usually I get physically hurt in the process. Not to mention the emotional toll this takes. I cannot control my own son anymore.
Notice how I mention I and me. After hitting rock bottom I realized that was the problem. I was just relying on my own strength and I was quickly becoming exhausted physically, mentally and emotionally. I felt like I was failing spectacularly because I couldnt manage things I was able to control just a few years earlier. I had to rely on my husband to physically handle Jacques, but hubby had to work to provide for us. When I was alone with Jacques I felt completely alone and isolated. I got scared to be alone with him, I was terrified of what he would do while we were alone because I would have to try to keep some form of discipline while being terrified of the abuse he would inflict.
So I searched for coping mechanisms. And I now am ashamed of the choices I made. The life lines I turned to was not good for me. I am not going to go into detail on this but I can say that it numbed me. I could take the hits and bites and even smile while doing so. I felt numb looking at him wreaking havoc. Jacques broke his tablet as well as our flat screen tv out of bursts of anger. But at least he hadnt hurt me so I just numbly witnessed his destruction.
Both my sisters have been amazing in their support. My youngest sister has been my rock since my sons birth. I am so glad she has met a man that loves her. Of course she now has to start living her own life and cannot be my lifeline as she has been for so long. I truly wish her the very best life has to offer because she more than deserves it.
But the knowledge that she has to move on is what finally broke me. My last piece of sanity went with that knowledge and even the coping mechanisms I had turned to didnt help. I felt completely broken and alone. I literally hit rock bottom, all I saw was black emptiness. I couldn't see any light. But the Lord sent a friend of mine in very similar circumstances to help me out. We had a nice visit together at a campsite and she looked amazing. I couldn't help wondering how she could still be smiling and happy with her challenges. She picked up on my distress and sent me a video the next day that woke me up a bit. It was a video reminding me of our Lord's love for us. But I was angry at the video. I didn't feel God's love, I felt alone and forgotten. I started chatting with her via whatsapp and amazingly both her and her husband came to visit us that evening. They reminded me that I am truly not alone, and that I never was.
I opened my heart to the Lord and apologized for forgetting about Him. I realized then the miracle he had shown me by sending my friend on my way at the exact time I needed her and Him the most.
We are doing better now. We have made some changes in our home. We have a safe room for Jacques. We took everything out of this room, there are 2 beds in the room and nothing else. When he gets out of control we can lock him in this room and know that he wont hurt himself or break anything. He has time to calm down and be safe at the same time. This room has helped immensely.
We have some new herbal medicine (for the aggression) we've been trying and it looks promising.
Further, we have decided to stop all medical interventions. No more IVIG, no more surgeries. We will try to keep the trauma as minimal as possible. He has been through enough. We will enjoy our son for as long as our God allows us to have him.
He deserves to have a happy, painfree life for as long as God spares him for us.
Believe me, this was not an easy decision to make, as everything in me wants to fight for his life, to keep him with us for as long as possible. But this is selfish. It is not fair to subject him to all of the painful operations and procedures just to fill my own selfish needs.
Every day we have with Jacques is a gift and we will cherish this gift with everything we have.
I was feeling so tired and so alone. I could not see light, I only saw darkness. I thought if this is it, if this is all there is I can just as well be dead. But if I'm dead what then? Where will I go? Will there be nothing? That can't be, there has to be something after death, but then there also has to be a God. And if there is a God then it is not as hopeless as I thought. And I could grasp and cling to that thought. I could see myself going on. That was the lowest point ever in my 37 years on earth.
What brought me to this point is a very long story. It started a little more than 14 years ago with the birth of my first born son.
I have always been a control freak, I like to plan and to feel in control of a situation.
For the past 14 years I have tried to be in control and on top of all my sons medical issues. I researched every new diagnosis so carefully that my husband started to refer to me as Dr Elsa. One of the major disorders Jacques was diagnosed with, I actually discovered while googling his symptoms. I have a big file (on Jacques) with all of the blood test results, the x-rays, the research and more. I would take the file with to every dr visit and admission. The drs actually loved this as it made their job easier.
Now, thinking back, the file was maybe not the best idea as I could see the file getting bigger, getting fuller and Jacques not getting better. His health was actually declining at an alarming rate.
This knowledge drove me to seek more options, more remedies and treatment options. And there was treatment options, very invasive, very traumatic treatments. And we tried them, Jacques went for 3 foot/knee operations, very painful operations. He also went for an emergency laparotomy. Unfortunately the incisional site herniated 4 times which they fixed 3 times with stitches only and finally the fourth time they fixed it with mesh. These were very invasive and very painful surgeries.
But still his health was declining. We saw a pulmonoligist who diagnosed him with severe obstructive sleep apnea and common variable immune deficiency. We tried a bi-pap machine for the sleep apnea but he could not tolerate it. So we switched to oxygen at night which he also has trouble tolerating. The treatment for the cvid involved admission for infusions with ivig. Jacques had an infusion every month for 18 months. This further added to his trauma.
At this stage (with the ivig infusions) Jacques was so traumatized that he would fight from start to finish. Myself and Johan had to physically restrain him which took a toll as Jacques was growing at an alarming rate and with this his physical strength as well.
Now to say Jacques is physically strong is un understatement. The fact that his body and internal organs are getting weaker does not mean that his physical strength is becoming less. In fact, with his growthspurts his strength is also growing. Jacques towers over me, he is about 10cm taller than me already. I cannot "get him to do anything". If he doesnt want to do something I am not going to be able to make him. If he wants to go into the kitchen (or any room) he will go through me. And usually I get physically hurt in the process. Not to mention the emotional toll this takes. I cannot control my own son anymore.
Notice how I mention I and me. After hitting rock bottom I realized that was the problem. I was just relying on my own strength and I was quickly becoming exhausted physically, mentally and emotionally. I felt like I was failing spectacularly because I couldnt manage things I was able to control just a few years earlier. I had to rely on my husband to physically handle Jacques, but hubby had to work to provide for us. When I was alone with Jacques I felt completely alone and isolated. I got scared to be alone with him, I was terrified of what he would do while we were alone because I would have to try to keep some form of discipline while being terrified of the abuse he would inflict.
So I searched for coping mechanisms. And I now am ashamed of the choices I made. The life lines I turned to was not good for me. I am not going to go into detail on this but I can say that it numbed me. I could take the hits and bites and even smile while doing so. I felt numb looking at him wreaking havoc. Jacques broke his tablet as well as our flat screen tv out of bursts of anger. But at least he hadnt hurt me so I just numbly witnessed his destruction.
Both my sisters have been amazing in their support. My youngest sister has been my rock since my sons birth. I am so glad she has met a man that loves her. Of course she now has to start living her own life and cannot be my lifeline as she has been for so long. I truly wish her the very best life has to offer because she more than deserves it.
But the knowledge that she has to move on is what finally broke me. My last piece of sanity went with that knowledge and even the coping mechanisms I had turned to didnt help. I felt completely broken and alone. I literally hit rock bottom, all I saw was black emptiness. I couldn't see any light. But the Lord sent a friend of mine in very similar circumstances to help me out. We had a nice visit together at a campsite and she looked amazing. I couldn't help wondering how she could still be smiling and happy with her challenges. She picked up on my distress and sent me a video the next day that woke me up a bit. It was a video reminding me of our Lord's love for us. But I was angry at the video. I didn't feel God's love, I felt alone and forgotten. I started chatting with her via whatsapp and amazingly both her and her husband came to visit us that evening. They reminded me that I am truly not alone, and that I never was.
I opened my heart to the Lord and apologized for forgetting about Him. I realized then the miracle he had shown me by sending my friend on my way at the exact time I needed her and Him the most.
We are doing better now. We have made some changes in our home. We have a safe room for Jacques. We took everything out of this room, there are 2 beds in the room and nothing else. When he gets out of control we can lock him in this room and know that he wont hurt himself or break anything. He has time to calm down and be safe at the same time. This room has helped immensely.
We have some new herbal medicine (for the aggression) we've been trying and it looks promising.
Further, we have decided to stop all medical interventions. No more IVIG, no more surgeries. We will try to keep the trauma as minimal as possible. He has been through enough. We will enjoy our son for as long as our God allows us to have him.
He deserves to have a happy, painfree life for as long as God spares him for us.
Believe me, this was not an easy decision to make, as everything in me wants to fight for his life, to keep him with us for as long as possible. But this is selfish. It is not fair to subject him to all of the painful operations and procedures just to fill my own selfish needs.
Every day we have with Jacques is a gift and we will cherish this gift with everything we have.
Elsa, you are such a brave woman and a caring and loving mom to Jacques. If I was in your shoes, I would have done the same. And you are also right when you say, he has been trough enough. Let the will and Grace of God guide you and your family and most of all Jacques through every day, day by day. You are in my prayers. And if there is one day (out of your busy schedule) you just want to sit and have a coffee, cry, shout or need a prayer, You know where to find me. I take my hat off for you and other mothers who go through these circumstances every day. May God bless you, and guide you on your path...Lovies, Hugs and big Kisses, Immogen
ReplyDeleteLove you my sussa! xox
ReplyDeleteAai my sussie. Ek weet (binne perke) waardeer jy gaan, en soos ek gesê het, even al skrop ek my eie nessie, jy bly my sus, en wanneer jy nood het Sal ek als Los om jou te help.
ReplyDeleteLove you en weet net, jy doen wat reg is vir jou, jou man en daai special kiddies van jou.
Love you!
Jy is n Ma duisend moet nooit opgee nie.. jy is nooit alleen nie.. dit mag so voel maar ons bid elke dag spesiaal vir julle..
ReplyDeleteAi maatjie, dit was presies wat ek nodig gehad het vndag. ❤️ Dinge is net makliker as jy mense het wat verstaan. 😘 Onthou ek is net n oproep ver.
ReplyDeleteElsa. Jy en jou man is ouers duisend. Mag ons Hemelse Vader julle seën omdat julle sulke sterk mense is. Bitter min sal kan doen wat julle doen. Julle is heros. Ons bid vir julle.
ReplyDeleteEk onthou julle nog van my kinderjare. Volgens my sal ek julle huis gesin beskryf as engele op my pad. Die lewe draai krom draaie met ons en soms weet ons nie meer watter kant toe nie. Die Here het jou n baie sterk mens gemaak en baie van ons kan by julle leer. Maar moet net nooit vergeet waar jou krag vanaf kom nie. Wees sterk en hou goeie moet. Onthou net die Here maak nie foute nie. Hy sien jou hart en Hy hoor elke stille traan wat val. Dink baie aan jou. Onthou nie. God gives the hardest battles to the strongest soldiers. Al voel jy party dae hulpeloos is jy tot alles in staat deur Jesus wat jou krag gee. Ek bid vir julle.
ReplyDelete