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I want to wake up from this nightmare no parent ever wants to live. Knowing that in just a short time your baby boy will be here no more. God is good all the time. All the time, God is good. I trust him with my little boy. I treasure these last moments we have with him. I just can't believe he's going so young. So little time we had with him and most of it was spent fighting for him. God is good. He really is. I'm a better person because of the journey the Lord has brought us through. I have a better marriage. I'm closer than ever to my loving God! I'm honored that I am Josiah's mother. I am his Mommy. It hurts to watch your baby die. Like I said before, I'm human. It hurts. It is so hard to type tonight as tears stream down my face. But what hurts so much more is the position we are in right now. His death is inevitable. It's happening very soon. As parents, we need to choose, with the help of his doctors, the way he is going to go. We have two choices and neither one sounds good. His gut is not waking up. We are surrendering the traditional way to get nutrition in. It won't work anymore. The pseudo-obstruction has shut his system down. And now, his liver is getting damaged from the only nutrition his body can tolerate. Our choices...1. Keep him on TPN and Lipids until his liver completely shuts down and kills him. The top symptoms of liver failure are excessive bleeding, swollen/painful abdomen, jaundice, vomiting, Nausea, confusion, coma, and eventually death. With this choice, we will take it week by week and his blood labs will tell us how fast his liver is dying. Our second choice; Take him off TPN and lipids and he will die from de-hydration, in less than 2 weeks. With de-hydration he will be sleepy, confused, and dry. This way of death is quicker and seems to me to be less painful. But how in the world is a mama to choose how her baby will die. I'm at a loss. I just can't grasp reality right now. I want to wake up from this nightmare and see my JoJo running around the house in his gait trainer getting into mischief again, just like he was, just 3 short months ago. I want to see him in his new wheelchair that hasn't been delivered yet. I want to see that smile day in and day out for many years to come. I told his surgeon that We cannot make this decision alone. We will be meeting with Palliative care tomorrow at 10 am to discuss our options and where we go from here. Never in all my life did I ever imagine I would be faced with such a decision. JoJo has touched so many lives. He is very special to us all. He has an amazing medical team that cares so much about him. We are struggling. His medical team are struggling. I know there will be tears in the meeting tomorrow. I am so incredibly thankful that My God trusted me with this gem, with this precious baby boy that I didn't carry, that I didn't birth; but that I get to call MY SON. I am his Mommy. But he doesn't belong to me, he is the Lord's son. He belongs to my God. 'The Lord gave, and the Lord [will take] away; blessed be the name of the Lord.” Job 1:21
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"Blessed Be Your Name"
Blessed Be Your Name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name
Blessed Be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed Be Your name
Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name
Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name
Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name
We will forever praise our God for what he has done and what he continues to do. Please continue to pray for the long and hard road ahead. May God be glorified with Josiah's little life and the rest of the decisions we have to make. Like I said before, when my Little JoJo's divine purpose has been fulfilled he will be with Jesus forever and Always. He will be able to walk, talk, and eat. I can't wait for my miracle boy to be in Jesus' arms.
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