What is Pallitive Care?

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. 

A nightmare No Parent wants to live

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  

"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. 

Click Here to read about Josiah's journey