To Be, or Not To Be

I’m trying to decide how to take today’s meeting wth Charlie’s surgeon. I can deliver it in the manner in which it was delivered to me, and you can make it what you like. Or, I can deliver it in the way I process it, and you can take it for what it is: an opportunity to be happy. It’s a choice between being hopeful and excited and being terrified and horror stricken. So, let me explain it where harsh reality and beautiful faith simultaneously exist.

Charlie will have his third heart surgery within the next few months, and the sooner the better. Typically, Texas Children’s Hospital waits until a child reaches 3-5 years old for the Fontan surgery, but Charlie needs it now. Ironically, his heart isn’t the big issue. It’s his lungs. He has AVMs that are extremely bad, especially for someone his age, and there’s no known cause for the severity and early presence. I won’t get into the science of it, but suffice it to say, he has low oxygen levels and difficulty breathing because of the AVMs. His surgeon explained that an early surgery is detrimental to hopefully improving the AVMs because the longer we wait, the less likely they will improve. So what does this mean? The surgeon said that Charlie’s case is critical. It will take a while for his oxygen to go up after surgery. If it goes up, it will likely take months. If it does not go up, we have to take more radical actions.

Um. What the f&$@?!? Okay. This is where I choose to hear, “Charlie’s oxygen WILL go up, and if not, God has that too.” But what I hear myself ask the surgical team is, “What you’re saying is, if the surgery is unsuccessful, there are no other really viable options to help Charlie…?” To which he said that’s mostly correct. We could do an intense cath, but it’s not likely to increase the SATs long term. He would consistently get bluer until the condition proved to be fatal.

Again…ummmmmm….tears? Screaming? They really oughta have a fully stocked bar in these meeting rooms. Instead, a deep breath. A prayer. A smile. What no one knows is Charlie’s life expectancy or his long term prognosis. But what I know is that I’ll hope for the best every time. I hear the worst, “Your son is dying,” and I hear the best, “We’re here to help.” I choose to be thankful.

And it gets even better. Charlie is most likely not eligible for a more successful surgery type due to his straddling mitral valve, but his surgeon will open his heart to verify the severity. If not too severe, Charlie will have a bi-ventricular repair which is associated with longer life expectancy and improved oxygen levels. The odds are not in his favor, but if Katniss can beat the odds, so can Charlie. I choose to hope for the best.

The surgery will happen in 2-4 months, but I asked to be put on the on-call list. I begged really. I want it tomorrow if possible. Each day sooner, his chances increase. It will happen within two months. I choose to be optimistic.

What will our life look like? An early birthday party within a week or two, no indoor play areas or museum visits. It means I’ll be the mom sanitizing everything in sight because germs can prolong a life saving surgery. By the way, the next time you see that mom Lysol the car door, you’ll wonder if she’s a nut or just trying to save her son’s life. #nojudgement  It means I will give Charlie his birthday gift today because there’s no time like the present. Life is beautiful when you get to live like your son *might* be dying. I choose to be strong (and to give him that extra hug too.)

Please pray. Please be full of gratitude and have your heart overflow with hope. Pray that we get an early surgery date. Pray he gets the bi-ventricular repair. Pray for higher oxygen after surgery. Pray for happiness and joy no matter what the prognosis. Then, know we are survivors, and we will be fine. We will be better than fine. You will be too. 🙂

14 thoughts on “To Be, or Not To Be

  1. You have such grace. Charlie is lucky to have a warrior mommy. So many prayers sent your way. Charlie is a fighter 💙 Keep the faith, I know you will.

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  2. I will be praying for Charlie. Prayers are answered and miracles do happen. God is in control. I have only seen Charlie’s pictures and he is so precious. I will pray for his Mother also and all his family.

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  3. Thank God Charlie has such a strong mother and aunt to be with him every day. You two are God’s gift to Charlie. I’m so proud to have such wonderful daughters. Just stay strong,keep your faith,and remember God has this. We love y’all and will continue to pray every day. Love y’all LOVE YOU Charlie
    Pawpaw

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  4. As a fellow heart baby mom, I cried through your entire post. God bless Charlie – no doubt God has big plans for your little man. You’ve got this mama bear – Lysol and Purell away my friend! Love and prayers. Nicole

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  5. Your blog is beautiful and meant to be shared with the world! It takes a lot of heart and courage to write your life, but then, you do have an amazing Braveheart by your side. Of course he gives you the strength too! I am always here, any time you need it. You are surrounded by warrior-friends who will be there for you throughout this battle, so take strength in that too.

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    1. Tessia Bama! We couldn’t do this without your calm and cool presence. Charlie loves every moment with you, and his mommy appreciates the night you helped her let go and laugh. Cheers to being courageous enough to make Gryffindor. 🙂

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  6. I’m going back to the beginning. I can’t imagine Sabrina! My heart breaks for you at this moment in your life. I am going to start praying for you and Charlie starting tonight – every night and every time I tell someone of this amazing mother who has decided to chronicle her and her son’s life on WordPress.com. Do you mind if I share “Happy Hearts for a Bit”?

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