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. 

Yes, I am the Coach's Wife!

This season has been one of the most unique seasons we have ever had. You all know the saga about moving to Nocona, the dreaded move, the bitterness, the fear, even the anger that crept in every now and then. Jeremy and the boys moved. Then I moved a few months later. We all started school, it was rough for everyone. I rolled around in my own misery for a few weeks feeling sorry for myself and blaming Jeremy for everything that (could potentially) went wrong.

One thing at a time happened and God told me to get over myself. I came to my senses and decided that this life is what I make of it. If I wanted it to be better, make it better.

Be the change you want to see.

God began putting people in our lives that He knew I would need. Amy, Kimberly, Amanda, just to name a few. Then the football players, one by one became the reason I got up every Friday morning at 5 am and stayed up until after midnight on Friday nights. Then "people we went to church with" became our church family. teachers, coaches, and staff of Nocona ISD.

I slowly began seeing God's purpose. \

During football season I filled my Thursdays with all the coach's wife duties plus some. I was the water boy, manager, trainer, photographer, snack packing, and sideline encourager. We made it through cold nights, hot days, pep rallies, locker room decorating, team breakfast and Friday night road trips. Football season came to and end. I had to stay busy and keep searching for my purpose.

Then Jordan's health took a turn for the worse and I don't remember much of December-February.

We spent night after night in the hospital, trips back and forth to Cook Children's, ambulance rides and so many appointments. The Nocona community showed up in big ways. From meals and fundraisers, prayers, dropping off and picking up the boys, there was so much more that I am probably not even aware of because I was gone with Jordan so much.

We made it through the holidays and it was on to BASEBALL season. Now, every one knows that WE love baseball. We love the spring, we love snow cones and homeruns, team t shirts and new baseball gear.

Like I said at the beginning this season has been the most unique of all. Jordan's unpredictable health has added a new dynamic to how we function as a family. It's a strange balance between staying at home with him because we are literally counting each breath to being able to go watch the JV and Varsity teams. Add a senior {yes, we have a SENIOR, surprise} to the mix and it creates even more of a desire to be in two places at once. I need a clone. I need to be at home and I need to be at the field. When Jordan is well enough for me to be away we are at a baseball field somewhere, doing a community service project, out of town for a tournament, or having team dinner. When he isn't well enough, I usually have my computer in his room, on the floor, beside his bed, editing and downloading baseball pictures, or making Little Indian forms, or trying to recruit players for All Abili-Tee Ball League, or printing uniforms. Have I mentioned we love baseball!?

Most of the programs Jeremy has been a part of I was simply "Coach Kirk's Wife", but this year I have gotten so much more from these boys, the school and community that being "Coach Kirk's Wife" is perfectly okay with me. I hope we can show this group of boys what they have done for us. That traveling to watch them play is an honor. It's more than just a game to watch. I see individuals coming together and creating a team. I see boys that are working so hard and cross that plate with pride. I see boys learning self control and the value of being a good role model. This year's team has started at the very bottom, with the basic of team bonding and good sportsmanship, new uniforms, new positions, and new plays but they are finally meshing and it makes my heart so proud! So even though being a coach's wife is hard and pretty lonely, our group this year makes it worth it. I could do without the 2:30 am phone calls telling Coach to play on cup pong though!

To any parent that may read this: 

When I am sitting in the stands or the dug out being the "team momma" know that I love your kid. Your kid is the topic of 90% of the conversations that go on around our kitchen table or in our living room. Know that when your kid is failing a class it stresses our family too. Know that when your kid loses a hat or jersey we look for it. Know that your kid will never go hungry when they forget their money to eat after a game. Know that when your kid comes across home plate or makes that awesome catch I try to get in on camera so you can have that memory forever (and we will definitely talk about it when Coach gets home after he has washed jerseys!) Know that when you trust us to take your kid out of town I feel honored. Know that my babies want to be like your babies . Thank you for sharing your son with us this year! 

-Meagan (aka Coach Kirk's Wife) 

I don't know if God's plan is to keep us in Nocona forever but I can finally say I am thankful Nocona was in His plan even if its just for a season, or 10!

Go Indians!