Just a mere 3 days ago, I had virtually no idea what palliative care even meant and today I am incredibly thankful for such a "department of medicine" at the clinic. Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illnesses. Before our appointment this morning, I couldn't help but think that I had to choose the way the baby boy would die. Why do we have to choose? What I found out today is that I don't have to choose. You see, Josiah isn't going to die of de-hydration or liver failure; Josiah is dying of end complications of MECP2 Duplication syndrome. Talking out everything with the palliative care doctor gave me such a peace about how Josiah's last days will be. No matter what we decide as his parents and doctors, God has already chosen his path and has laid it before us.
I'm still in shock. I still humanly want to find a magical way to save my baby. To keep him with me for as long as I can. It shouldn't be this way. I shouldn't have to bury my own baby. But like I said yesterday; Josiah doesn't belong to me. Josiah belongs to God and we have had the privilege of caring for our precious miracle boy for the last 21 months. Only 10 months of the 21 months I've had the honor to be called his Mommy. These last three years have changed me and I pray that Josiah's story goes viral and many could come to know the Lord through my little boy's life. John 3:16 "For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life." I'm understanding the pain God felt when he gave Jesus, HIS Son, to the world as a gift for the punishment of all our sin. God didn't have to send Jesus. He didn't have to redeem us. We deserve eternity in hell because of our sin, but GOD SO LOVED us that HE sent Jesus; to live a perfect life; to die on the cross; be buried; and rise from the grave to be in heaven forever.
Romans 6:23 "For the wages of sin is death, but the gift of God is eternal life in Christ Jesus our Lord." This gift is free, we just have to be willing to accept it. God is good all the time. All the time, God is good.
My heart aches more than I ever thought it could. How do we move on after Josiah goes home to Jesus? My identity has become so apart of who Josiah is, I feel I could become lost without him.
We not only our losing our son; we are losing a network of people that helped support, love, and care for our miracle boy. Our therapists, doctors, nurses, special needs play groups, and my time investments. equipment, machine, and devices. We will lose the life we have been living for so long. But I'm glad that I don't have to find my identity in my miracle boy.
In reality, my identity is not found in Josiah's special needs but in fact, my Savior, Jesus Christ.
We may feel lost, but we are not. Deuteronomy 31:6 "Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you." I find my comfort in the Lord even in the storms, when all the lights go out. I look to my savior for refuge. Proverbs 18:10 "The name of the LORD is a strong tower; the righteous man runs into it and is safe.
We are cherishing these last moments we have with our miracle boy, Josiah. I still cannot fathom how we are going to go through it. I'm still waiting to wake up from this terrible nightmare and see everything is going to be ok. But then my Lord gently and lovingly reminds me that Josiah deserves paradise, he deserves to be pain free. In heaven , my miracle boy will be able to walk, talk, and eat. What beauty there is in just that. My God is good! Proverbs 3:5-6 "Trust in the LORD with all your heart And do not lean on your own understanding. In all your ways acknowledge Him, And He will make your paths straight."
A friend has set up a funding page to help pay for Josiah's funeral and expenses. Click Here is the link if you would like to donate or if you want to share with others. Anything would be helpful. We are not prepared financially. We have been hit hard and have run out of time.