"Baka hindi niya kayanin. At least may ginawa tayo. May gawin o wala, it's still the same. Maaaring maagapan, pwedeng hindi."
These are the words that keep on haunting me since our meeting with cranio kid's doctors few weeks ago to check the MRI scan result that we had last October.
Upon our meet-up, what made me cry from hospital to home plus few more hours until I fell asleep was when the doctor told me that Carlisle might undergo 2-3 surgeries for this confinement alone. Yes, you read it right. God, 'yung isa pa nga lang eh, halos ikamatay ko na. What more kung tatlo? I can't bear seeing my child being in so much pain. We have survived, why do we need to suffer more? Why do we need to come back to this situation?
Back on my last update about ze cranio kid, we were confined for more than three months last year due to shunt infection. Surgery was already planned that time but due to lack of schedule (operations need to be scheduled beforehand, and doctors weren't able to fit one for us), I decided to go home for the holidays instead of spending it inside the hospital and getting sick again.
The shunt infection might be caused by the blood infection Carlisle had last July 2015 while we're doing are radiation therapy sessions. We were confined for a month and a half by the. Since blood circulates all throughout our body, doctors said most likely that went up to his brain and infected the shunt. The plan is to remove all the foreign bodies on his head - that's two shunts to be exact - then undergo 6-8 weeks of antiobiotic treatment via IV. Once he's clear with the bacteria diagnosed, off we go to his second surgery to replace the shunts that are about to be removed from him. The one for his hydrocephalus is actually required, the other one for his tumor will be based on how he will react without it on him. So once he goes well without the other one, then, he will be left with one. His third surgery was not explained to me well enough, since we're so focused with cleaning the infection right now.
Knowing that he'll undergo three surgeries on one confinement really breaks my heart. No parent would ever imagine going through this trial with their little ones. When all you did was to take care of him and give him all the best, yet this happened. Knowing Carlisle, doctor said it is more likely for him to survive. They were able to operate an 11-month-old kid with the same diagnosis and was able to go home after a month or so.
I wish I could exchange my life to yours, mahal. I wish our smiles together can be turned into red potions - they could fully heal us in a click. I wish Nanay has a lot. I wish I could have given you everything. I promised to give the best life to you, and yet, at an early stage, I am failing you.
Had I known that asking God to give me the best would mean this, I should not have asked. Had I known that asking for the best gift would give you this, I should not have asked. Had I known being special would be as painful as this, I should not have asked.
I always want to understand why God is letting this happen to us.
While searching online, I found this scriptural prayer created by Lisa Button on her blog post. It helped me breathe on a bit saying this prayer. As you read on, please also mention this whole-heartedly for ze cranio kid.
Strong and Faithful Father,
My heart is breaking for my child, Carlisle. The weight of this situation is so heavy it’s difficult to breathe. My words choke out in fragments. Sometimes they don’t come at all. Articulating thoughts requires more energy than I have, so I just sit in silence.
My strength is gone. I’m anxious, Father. This situation doesn’t make sense to me. My child, Carlisle, is so innocent and vulnerable. I don’t understand why this is happening.
Help me to trust you with Carlisle's life... with every aspect of this situation... with all the pieces of my life. Keep me from attempting to rely on my own understanding because there is no way to understand this.
Help me trust you with all my heart – not just part of it. I acknowledge that everything in the heavens and earth – everything that is precious to me including Carlisle – belongs to you. (Proverbs 3:5-6)
This is your kingdom not mine. I adore you and recognize you are in control of everything. (1 Chronicles 29:11; 1)
Your ways are higher than my ways. Your thoughts are higher than my thoughts. (Isaiah 55:8-10; Romans 11:33-34)
You are good, loving, and faithful. It’s absolutely impossible for you to do evil or to do wrong. Help me to believe this in the depths of my soul during this time. (Deut. 32:4; Job 34:10; 1 John 1:5; Psalm 86:15; Psalm 100:5)
Thank you God for remaining faithful even when I act faithless in my pain. Your love, presence, power, and promises are not dependent on my behavior. (2 Timothy 2:13)
You understand my pain. (Isaiah 53:3)
Give us strength because we are flat out weary. Help us run this grueling race with perseverance and never give up.
Help us keep our eyes glued to Jesus, our champion, who perfects our faith. In him all things hold together. We will depend on him to hold us together no matter what comes. (Colossians 1:17, Hebrews 12:1-3)
Father, I love and adore Carlisle. Thank you for entrusting him to me. It is such a privilege being his parent. I humbly ask you to bring complete healing to Carlisle and make him physically whole if that’s your will.
If it isn’t your will for Carlisle to heal during his/her time on earth, I will still love, serve, and follow you.
I know that you are for Carlisle, not against him. No illness, disease, disappointment or setback – nothing in all the world – can separate Carlisle from your love. (Romans 8:35-39)
I ask you to protect Carlisle emotionally and spiritually. Give him the strength he/she needs for each moment, each test, each prod, each pill, each surgery. (Luke 11:1-4) With your great love, drive out all his fear and comfort him. 1 John 4:18
Even though I can’t see it now, I believe that in all things you work for the good of those who love you. No matter what happens, you will bring beauty from the ashes of this time. (Romans 8:28-29; Isaiah 61:3)
I thank you God for continuing to work good in me, transforming me into your image, and perfecting me until the day Jesus returns. Use this struggle, Father, for your glory and renown. (Philippians 1:6; 2 Corinthians 3:18)
Thank you for being with Carlisle in the fire. There is always hope with you. (Genesis 50:20; 2 Peter 3;9; Isaiah 43:2; Isaiah 61:3)
I submit myself, this situation, and Carlisle to you, God – 100%. I trust you with the outcome. I will rely on your strength completely.
I pray these things in the name of Jesus.
I really appreciate everyone who are still with us on this battle. We need all the support and help that we can get from everyone - from financial to spiritual - as we get through this monster again. If you want to donate, please go through these options:
GoFundMe for Credit Card or Dollar donations
Bank of the Philippine Islands
Account Number: 0489653699
Account Name: Marie Ruth C Berma
Banco de Oro
Account Number: 005000045298
Account Name: Marie Ruth C Berma
If you know any organization whose into helping sick kids, please share it on the comments section below. See you on our next update!