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!

Love Without Borders

Dominican Republic. My heart will be forever changed. 

Thank you so much to each and every person that prayed for me and our team, donated items, purchased items from the Amazon wish list and donated money. The trip to the DR would not have been the same without you. 

Satan was working overtime to keep me from going to the DR but God won the battle and I got on the plane, despite a sick baby, a last minute move, a new teenager in the family, and my friend forgetting that she was supposed to take me to the airport! 

I got to the airport. Weighed my baggage. 50 pounds exactly---thank you Lord! Got through security and found Amber {that was worth the last 6 day in itself} and we started our journey to what would be one of the most rewarding things I have ever done in my entire life.

One of the first devotionals we heard was about how God has prepared us for this very moment. How God has worked out every single detail and taught us exactly what we would need to know for the week ahead of us! If you're reading this, you probably know most of the different circumstances I have been through in life so it won't surprise you that I had specific encounters with women struggling to get pregnant, an autistic child whose mom was so ashamed of her, a tiny premature baby with a brain injury had 2 seizures in my arms, and the list goes on. There is no doubt that God had prepared me, not only for the week but for the specific patients that I treated. 

When we arrived we were put into groups that we would be working with the entire week, over the course of the week God also revealed Himself in big ways, matching us up perfectly. 

Our team treated over 400 patients in 4 days and two of them will forever be in my heart. A baby boy covered in scabs, had necrosis, and so dirty that I grabbed a tub and we gave that sweet boy a bath on the alter of the church that we were using as a make shift clinic and a blind tiny premature baby girl with a cleft palate/lip. 

Even with everything that Satan was trying to throw my way God removed all obstacles and made the way clear. I went to Dominican exhausted, afraid, and really questioning if I should have even left America but the spirit of fear is not from The Lord and He made that very clear to me. I was restored, spiritually rested and even more spiritually prepared to take care of the things at home when I got back. 

You can read more about the organization that we worked with at www.stchm.org Please continue to pray for the orphanages that are partnering with STCH Ministries and the team that lives in DR full time. 

All in God's Timing

Today I finally have some time to sit down and write a more detailed update on life!

God's timing is just that, God's. Not ours, not our friends, not the doctors, not our mom's, or husband's, or even our kids!

Last Sunday we were transferred to Cook Children's in Fort Worth via ambulance for the second time in 4 weeks. Here we go again, get seizures under control and we will be on our way home.

Not so fast. It didn't quite happen that way. Unfortunately. Monday, Tuesday...9 days later we are still here. Still praying for healing, still searching for answers.

All in God's timing we will get answers and Jordan will be healed, in Jesus Name!

Sitting up for days, watching, waiting, praying, crying, waiting more, and praying more allows for a lot of time for reflection. It also creates time for doubt, confusion, and frustration. When that time hits I find myself praying to God send me something or someone that can pull me out of this dark hole I have fallen into. Sometimes I need someone to rescue me. Sometimes I can climb out on my own and sometimes it takes God sending that person to send me a song I need to hear or calling and simply saying "I am on my way!", sometimes its green bananas or a roll of quarters, a meal train or a fundraiser, or the confidence to know that I can call a few people anytime day or night! But you know what I know for certain, that God will provide. He will provide exactly what I need, not less and not more.

Yesterday was a good day. Our good days may not look like your good days, in fact I am almost certain that they do not. Jordan's new baseline is much different than it was 6  months ago. Yesterday and today we played for about 45 minutes to an hour and then he needed to rest. If you seem him in those 45 minutes you would think he is doing great. He is laughing and playing, kicking and smacking. But the rest of the day is very calm and somnolent and this is good too because that means he is not in pain. He fatigues easily and needs a lot of rest but he is pain free for the most part and that's the most important thing to us. We are proclaiming ALL GOOD DAYS!

This is the Jordan you all knew before we were admitted last Sunday. 

 This is our new normal after playing for 45ish minutes, he is likely having an absent seizure here. He is "disconnected" from his surroundings and getting very tired.

These pictures were taken within 5 minutes of each other, showing how fast he gets tired and is a more accurate description of how our good looks different than most people's good. All three of the pictures he is doing good! All good days!







While we are navigating this new normal for us we also are trying to figure out the rest of our life. Trying to decipher between God's will and our own. We have two trips planned and paid for over the course of the next two months. One being the mission trip that I am supposed to leave for next Saturday, February 2 and the other being a NYC trip in March for Jeremy and I that was our Christmas present. My prayer is that God will reveal His plan to me regarding both trips but especially the mission trip that is so close. Right now I am confused and scared {confusion and fear does not come from God}. I pray that if it is my will for this trip that every door be closed and His plan be revealed with clarity and if it God's will that He will continue to bless me and every decision and answer will be determined soon and that He will give me a peace about leaving the country for 8 days. I trust our nurses and they are all encouraging me to go but no one can take care of their child like their momma can. Do we put our life on pause or do we keep trusting God that He will take care of us and continue on with life? Hard question to answer, huh?

My hope is in YOU!

Today Bridget and Olga from Hope Kids came to visit Jordan and I am brought me the book Jesus Calling and it is a daily devotional. I did not read this daily devotional before writing this blog.

Today's Devotional: January 22
Strive to trust me in more and more areas of your life. Anything that tends to make you anxious is a growth opportunity. Instead of running away from these challenges, embrace them, eater to gain all the blessings I have hidden in the difficulties. IF you believe that I am sovereign over every aspect of your life, it is possible to trust Me in all situations. Don't waste energy regretting the way things are or thin king about what might have been. Start at the present moment--accept things exactly as they are--and search for My way in the midst of those circumstances.

Trust is like a staff you can lean on as your journey uphill with ME. If you are trusting in ME consistently, the staff will bear as much of your weight as needed. Lean on, trust, and be confident in Me with all your heart and mind.

Psalms 52: 8

Today is day 16 of The Daniel Fast and when I started I said "I will be good as long as Jordan doesn't end up in the hospital!" I mean they have ice cream, Starbucks, Chic-Fil-A (would should be exempt since it's Jesus Chicken!) Wednesday Cookie Night and REALLLYYYY good chicken strips and chocolate pie! {can you tell I am fasting, haha}. Anyways, this is where I am supposed to during this fast. Fasting at home is easier and I thought to myself, oh this is doable. Fasting at the hospital, lets just say I have spent a lot more time in the chapel {which has beautiful stained glass} then I ever have. God has provided me with an incredible sense of peace and comforted me. Every hospitalization I have angry angry thoughts about the people that hurt my baby and this hospitalization I have not had those thoughts one single time!! I am filled with comfort and peace. Is Satan trying to sneak in?, you bet he is! He is not allowed here, in Jesus Name!

2019. A Year with a {Purpose}

I have restarted this post two or three times so far and usually when I do that my brain is foggy, I am stressed, and I can't put my emotions into words and it is very frustrating but I think I may be able to start and finish this time! 

In 2019, I decided to live this year with a purpose. I think I am a pretty driven person, once I set my mind to something I can usually get it accomplished, give me a task and I will make it happen. With that said I wanted to make sure this year I did more things intentionally than not. 

I want 2019 to be a year of purpose. 

2018. I did a lot of self reflection, some of my worst mistakes were called out by those I love the most and it was not pleasant. Last year I learned who loved me and who I loved, unconditionally. I finished school and started working in home health, which was great until I lost my first patient, who I grew to love so quickly because he was similar to Jordan yet unique in his own ways. We moved to a new town, a hard adjustment, is putting it nicely.

This year is a fresh start. 

My resolution: to live with a PURPOSE.  

My 2019 Goals: {in no particular order}

• Daniel Fast: which I am currently on Day 5. [another post coming soon]
• learn more Spanish: also currently working on to prepare for my trip to Santo Domingo.
• learn to play the guitar
• daily quiet time: off to a good start so far! 
• Dominican Republic: to have open eyes and heart and be prepared for God to work
• Spain
• family vacation 
• be the advocate needed for all the boys
• Ancestry DNA- I want to do it for myself AND the boys
• Job- I would love to have a job that is the same as the boys schedule 
• Jordan's MAW 
• supplement some income doing crafts and/or t-shirts 
• go back to school