If I knew what I know now

“If you could see your whole life laid out in front of you, would you change things?

We were at the hospital today for my younger son’s chemotherapy. He was laying in that hard dreary hospital bed while chemo is being infused through his port. The cell phone rings and my husband steps out from the room to answer a work call. Before dozing off, my son asked me a question that surprised me because he’s never asked me this before.

Mom, would you have had me if you knew I was going to have cancer?

I knew the answer to that question. But I stayed silent for a second or two. I didn’t know if I should say anything. Should I tell him the truth or lie?

I spoke with my therapist about this the last time. I asked her if she’s seen the movie, “The Arrival.” I wrote a blog post about this not too long ago unknowingly it would become a recurring theme in my life, a question I would be asked a year later. There aren’t too many people I know have seen this movie (or liked it) so I didn’t expect her to know about it. I told her the premise of the movie: the main character is a linguist and was assigned to communicate with the aliens who were currently invading earth. During the communication, the aliens had shown her the future. And the future was having a daughter who will have cancer and dies from the disease. She changed nothing about her life despite knowing about her daughter which made her husband furious upon finding out that she kept this information from him.

My answer to my son was, “NO…..I would not have had you.” BUT… I told him, I probably would have made sure he was born at another time and place. I probably would have still named him Jude. Then I changed my mind and said maybe not. Perhaps I would have named him Michael, Peter, or James—anyone from Jesus’ disciple whose name didn’t have to do with the most difficult circumstances (such as Jude). He replied by saying he still liked his name. I said, “okay, I’ll keep your name.”

I’m not sure why I’m even writing about my private conversation with my son. Perhaps I felt bad about telling him how I really felt. As I had told my therapist, I feel guilty for bringing him into this world, and the life that he was given: spending most of his childhood life with hospital visits, taking medicines he couldn’t even pronounce as a five year old child, medical terms he shouldn’t have to know at an early age, fighting for his life several times, and dealing with life or death situations.

If I knew what I know now…….how could I bring him out in a life that’s full of difficult challenges? A life that hasn’t been fair to him? A childhood that wasn’t all about fun and games but instead a life of hospitals and doctors……

How could I be that selfish?

Each night, I wake up in the middle of the night thinking about him. I’m worried sick about everything—how his life is going to turn out, his future, how he is going to handle everything from love to career. And sometimes the dreadful “what if”—what if he can’t become eligible for CAR T, an immunotherapy that’s just been approved by the FDA two years ago?

What if he dies?

What if…..what if….

Oh what the fuck!!!

I’m sick of thinking. I’m sick of being worried. I’ve spent the last nine years with PTSD, with fears of loved ones dying, with my life turning into shit (it actually already has), with my sons getting hurt and not finding the love they deserve. Of course these are all natural fears that anybody can feel but on top of everything, I fear that my son will die.

I get all kinds of advices from people—what to do, what to eat, what to feel, what to… god I wish they would just stop. Because I realized that life is all about gray areas. It’s never really just black and white. If we had a handbook on life, on how it should be lived, then none of us will struggle. We will have all the answers to difficult situations. None of us will have to guess. I remember reading about breastfeeding when I was pregnant. They say your baby will be healthier if you gave them your own milk, blah blah blah. Well I breastfed my older son for one month and my younger son for eleven months! And guess who gets the fucking cancer? Not once or twice but three fucking times! I no longer want to listen to anyone about what I should or should not be doing. I’m beginning to believe that life is predestined. Regardless of what you do, you are going to get all the shit you’re bound to get anyway!

We did everything we were supposed to do. We were over protective—we even took our son out of school during flu season, we constantly washed our hands, ate organic foods, stopped or cut down on eating red meat etc. etc. etc. Yet here we are….in the same hell hole as we were. So tell me did any of that make a difference? Probably not.

Here’s also one of the ‘advices’ I just absolutely cannot stand:

God will not give you more than you can’t handle.

Well, how does God know I can handle all this shit I’ve been given? He should know I can no longer handle anything at this point. Hence the daily doses of Xanax! I am begging him to release me from all the pain and to let my son live like a normal teenage boy.

Oh but there’s more:

God gives his hardest battles to his strongest soldiers.

I may be at war with cancer but I’m not a soldier. I’m not strong. I am among the weakest. If being weak disqualifies me to fight god’s battles, then so be it. In fact, I prefer it that way. And neither would I volunteer my kids for these “battles.”

I sure hope I’m wrong because I don’t agree with predestined life. I see no point of our existence if that’s the case. I don’t want to think my son was born only to suffer. There’s gotta be more than that. There’s got to be a God who doesn’t determine the outcome of our lives as soon as we are born.

God, if you’re listening, I am still waiting for that rainbow you promised.

13 thoughts on “If I knew what I know now

  1. Hi Boots –

    To say I don’t know where to begin is an understatement. I’ve had your ‘If I knew what I know now’ in my email since you posted it several days ago. I’ve read and re-read it several times.

    The questions you raise about God and faith and suffering are such a part of the human condition. As a Christian, I understand the human experience of suffering as an example to be understood as a human reflection of the suffering of Christ on the cross. The Buddhist side of my mind understands suffering as the basis of the Four Noble Truths which summarize the foundational teachings of Buddha.

    I have deep empathy. I’ve meditated about your situation, prayed for your son, for you, and for your family. And, I will continue to do so.

    – Larry

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    1. Hello Larry, thank you. I have struggled with my faith for the last month but I have learned that without it, I’m not sure where to hang on to. It’s not the best time to lose it.

      Suffering, unfortunately, is part of living. But some have it more than others. Perhaps I do. But I just teach myself to roll with every punch. Thank you for the thoughts and prayers. Hope you’re doing well.

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      1. Hi Boots –

        I am doing well, thank you. I’m always inspired by your openness and your honesty. Your strength in adversity is an inspiration to me.

        – Larry

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      2. Aww thanks Larry! I hope that I continue to battle the demons inside me and that life should always be dealt with strength and to never give up during its weakest moments. Hey by the way you picked the right day to write to me. It’s my day of birth! 🙂

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  2. I agree it must be so hard especially for a mom to face that situation and nobody want that for her child to suffer… my heart aches for you and will pray for his recovery. I think you are already brave enough to face these battles… hang on.

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  3. I remember, when I was going through chemo, thinking about my mother and how her journey was even harder than mine. I prayed that she wouldn’t have to bury her youngest son. I cannot imagine the terror and helplessness that you feel at your son’s side as he fights for his life yet again, just as someone who has never felt the chemical cocktails coursing through his/her veins can never understand the experience of chemo. But I have seen someone that I love dearly, more than anyone else in the world, standing in your boots; and I have seen her come out on the other side. She is a changed woman. I don’t know what agonies of the spirit she went through, but your words give me a glimpse into her suffering. And I am brought to tears again by the selflessness of a mother’s love. That despite your fears, despite your agony, despite your tears that could fill an ocean, you will never abandon your son. You will stay at his side every step of his journey, even if you have to crawl on your hands and knees. You have no idea what a blessing you are. You are an answer to prayer. Your love is the purest expression of divinity that exists in this hell we call life. Greater love has no one than this, but to lay down her life for another. Death, in some ways, is easier than living. There is no greater love than the one you have for your son, walking by his side in the valley of shadow of death. There is no greater courage, no greater sacrifice. What you are doing for him is not human. As you know, what life is demanding from you is beyond any human capacity. And yet here you are, doing it AGAIN. Doing the impossible because of your unconditional love for your son. Could there be any more convincing demonstrate of a higher power? God cries through your tears, God loves through your heart, God comforts through your hands. You are his vessel through which your son knows, in a very direct, tangible and physical way, God’s love for him. And God loves you infinitely more than you love your son. You are his daughter. I pray that he sends you angels to light your footsteps in the darkness, to lift your arms when they grow weary of carrying your son and your family. Every tear that falls from your eye is more precious than the brightest diamond. You are an expression of God’s unconditional love in this world, you are flame pushing back the shadows of despair in the lives of those closest to you, even as you feel consumed from within. Cast yourself on God’s love. God was willing to watch his own son die on a cross to save his other lost children, but when the cross became to heavy for Jesus to carry alone, God sent someone to carry it for him. I don’t know what life has in store for you and your family, but I do know that your suffering has a purpose, and I pray that this purpose is revealed to you. You are in my prayers

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    1. As I have written in the comments section of your blog, thank you for your kind words. Please remember that you are an inspiration to many and one day I will show your blog to my son. When he beats his cancer for the third time, I want him to do exactly at what you’re doing. Actually you remind me of him (or vice versus). Like you, he is a determined young man who would stop at nothing. He just graduated from middle school and he made his doctors aware that he will not miss the ceremonies regardless of his ANC (having zero immunity). He was weak and tired in his last three weeks of school but made sure he was there everyday. He made his classmates look like little wussies (sorry for my language lately 😂).

      Anyway, each time you go on that beach, remember of a great life you’re living. And there’s someone from Texas who admires (and jealous 😜) of you! Take care and God bless.

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