When being strong isn't enough, unspoken questions and hospice care.

Merriam Webster defines strong as "the quality or state of being strong: capacity for exertion or endurance". No where in the dictionary is strength related to crying, broken, exhausted, fatigue, sadness, or fear. When we think of a strong person, often Super Man is the first thing that comes to most peoples mind. 

When you decide to place your child on hospice care, strong is the complete opposite of what a parent would describe themselves as. When people find out your child is on hospice they instantly feel sorry for you, a lot of times people say "you're so strong!". Really?, because that's news to me?! 

The reality: I am not strong. I am not strong when I am on the bathroom floor crying. I am not strong when I have been up for 25+ hours during a crisis event. I am not strong when I am pulled over on the side of the road bawling because I finally found my sons funeral song and I can't share it with anyone because people will think that's "weird". I am a mom, doing what every mom would do if their child was on hospice. That doesn't make me strong, that makes me a mom.

Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:28-31

Being strong {alone} isn't enough to keep you on your feet when you are living in anticipatory grief. 

Please do not feel sorry for me. Please do not feel sorry for us. 

We have a great life because our son has hospice available to him. Is child abuse great, no. Should anyone ever have to go through what we are going through, no. Is our life still full of laughter, smiles, hugs and kisses, I love yous and birthday wishes, YES! 

What is hospice for children?  
Hospice for Jordan means no long hospital stays and more days at home with his brothers. It means HIS nurses and I can give him all of his medicines instead of strangers. It means when he cries and momma knows why we don't have to push a call light and wait for who knows how long just to explain to someone we just met what is wrong. It means having a counselor and social worker available 24/7 so when the boys start wondering why Jordan's appearance is changing they can help them grieve and cope. It means when the time comes for Jordan to be with Jesus he won't have to be rushed off to a sterile hospital room. It is a team that will make sure we have everything we need to make Jordan comfortable.  

What hospice is not: 
Hospice is NOT giving up and letting him die or putting an expiration date on him. He is NOT going to starve. He is NOT going to go without medicine. He is NOT going to be in pain. He is NOT going to be alone. 

When is Jordan going to die? (the BIG unspoken question)
The simple answer: we don't know. What we do know, is that his overall health has declined dramatically in the last 4 months. Jordan was in school in November, tolerating therapy, oral feeds, saying words/sounds, rolling over, weight bearing, almost crawling, sleeping through the night, maintain his heart rate and oxygen, meeting his formula intake goal everyday, and working hard to learn new skills. He is not able to do any of those things anymore and we have added 7 crisis medications for when he goes into a crisis. 

What is a "crisis"? 
For Jordan a crisis is unstable heart rate, ranging from 40 bpm-170 bpm. A normal heart rate is 70-110. Low oxygen saturation. Multiple uncontrolled seizures, 10+. An autonomic dysfunction rash that whelps up covering his body. Low or high temperature. Uncontrollable screaming and crying that last for hours. In the past Jordan would have 1-2 crisis every 6-8 months, now we are seeing 5-6 crisis a week. 

{Warning: these videos can be sensitive to some}

What does the future look like? 
Today we are going to sit down with the boys and discuss what our future does look like, what questions the boys may have about Jordan's unpredictable future and have the hard honest conversation about dying. We are going to be taking Jordan's Make A Wish trip soon. We will be enjoying his newly decorated Moana themed bedroom. He will continue to make us smile everyday. We will still climb up in his bed, make fun videos, and love him. I will continue to plan his funeral [that was tough to type] so that when the day comes it will be perfect. We will continue to live one day at a time and enjoy every moment we get to have this side of heaven. 

We will need lots of prayers in the coming weeks and months. My boys will need prayers tonight. As a mom you want to protect their innocence and never give your children something to worry about but this is our reality, I want them to be prepared and have any and all resources available to them to cope during this difficult time. 

They say there is a reason, 

they say time will heal, 

But neither time nor reason, 

will change the way I feel.

For no one knows the heartache

that lies behind my smile,

no one knows how many times, 

I have broken down and cried. 

I want to tell you something

so there won't be any doubt, 

we love everything about you, 

medicines, tubes, and belly laughs too. 

When God decides to take you back, 

you'll feel the love that never lacked. 

That's what gives me hope

in this difficult time. 

Resting in His promises is my only joy, 

know that I will love you forever, 

my sweet baby boy.