Friday, January 17, 2020

Joy and Sorrow

Joy and sorrow. Together, can they co-exist? 

It has been 11 months since I have updated the blog. 11 months ago we had some big heavy decisions to make. Unfortunately the decision we had to keep making just got heavier.

DNR?

Hospice?

Medications?

Funeral songs?

Is this it?

Is it time to call family?

Funeral plans?

Cemetery plot?

Casket choices?

Headstones?

But the most conflicting..

Joy or sorrow?

When the righteous cry for help, the Lord hears and delivers them out of all their troubles. The Lord is near to the brokenhearted and saves the crushed in spirit. Psalms 34: 17-18 

How could I possibly wake up again? How could I possibly smile again? How could I go on a vacation and enjoy the beach again? How could I laugh again? 


Jesus. That's how. 


It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed. Deuteronomy 31:8


Jordan's entire journey from weeks before his adoption until the day he went to be with Jesus was surrounded by a verse. A verse that will forever be my reminder of the life full of joy that he lived. 

Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing. James 1: 2-4 


He lacks absolutely nothing and that is how you have joy and sorrow. While we are so full of sorrow here on Earth my heart sings joys for the complete healing of my baby boy. I miss his laugh, his smile, his joy but I wouldn't selfishly ask for him to live another day without Jesus by his side. 


The day Jordan met Jesus, the most beautiful horrific day of my entire life. At 5:30 am Jordan woke me up from a quick nap. We had been up for almost 5 days with just little 5-10 minute naps between the Kira and I. I knew that morning that Jordan was going to meet Jesus soon. Kira woke up Jeremy. Jeremy would later go to work and just a few short hours later, the Lord would confirm in Jeremy what He told me that morning. The boys and Jeremy came home from school and slowly our home started filling with our closest friends and family. We got to hold Jordan and we cried and we praised Jesus for His promises and His unwavering love for Jordan. One by one people came from all over the state to be with us as we knew that Jordan was getting closer to Jesus. 


Over the next 23 hours 43 people, what later would become "My 43", filled our tiny home. A surplus of food everyone. Fans to cool the house off. Chairs to sit in. Songs to sing. Memories to share. Pictures to show and videos to watch. 



Between 4:30 am and 5:00 am on August 17, 2019 Jordan left my arms and was handed into the arms of Jesus, completely healed and healthy for the first time in 3 years, 41 weeks and 3 days he was completely healthy. Can you imagine opening your eyes for the first time in over 3 years and seeing Jesus? What a wonderful sight that must be! 

In the last 5 months I have have experienced the highest of highs and the lowest of lows. Knowing your child is with Jesus is the absolute best feeling I have ever had, I can't even put it into words. I know he is protect for eternity. Touching your child for the very last time is the lowest of lows. This unfortunately, is the reality of life. 

My 43.

There is an intimate relationship that is formed between people when they experience the lowest of lows together. There is a bond that can not be broken. There are people who were almost strangers, people I only knew of their names, on August 16, 2019 that now are My 43. The 43 people that have literally held our family together since August 17, 2019 and were with us, in our home in Jordan's very last moments. My 43 stood for hours and hours, without a break, they slept in corner on the hardwood floor, they cried tears, they dropped what they were doing and drove across the state, the did our laundry, the cooked us food and cleaned our house.  I will be forever grateful for My 43. 

I have experienced undeserving grace, given patience beyond belief, we were overwhelmed by the generosity of our community, family, and friends. We haven protected by God because of your prayers. Thank you for loving us. 

Today, 5 months and 5 hours ago my son ran into the arms of Jesus.  

If you have someone close to you that has experienced the loss of a child please just remain with them. Not the day of, or the week of or the month of, remain with them as long as you can. Friendships we never expected to dissolve have slowly disintegrated over time. It's no ones fault, we understand. Do not feel guilty. Do not even apologize, unless it makes you feel better. It's okay.

If you don't know how to remain with your friends here are some ideas that have helped me get through the days on this horrible journey

  • say their son or daughters name 
  • remember their son or daughters heaven date, every month or year
  • make a donation in their son or daughters name 
  • provide dinner for them (even months after the loss)
  • check on them 
  • don't judge their decisions 
  • don't assume you would do "it" [grief] this way or that way 
  • share pictures, videos, memories you have of their son or daughter
  • visit and take pictures of their son or daughters grave site 
  • tell them when you think about their son or daughter 
  • most importantly, pray for the entire family and tell them when you do 
If you are worried about upsetting mom or dad, trust me, you won't. They may cry but that doesn't mean you have "made things worse". That means they miss their son or daughter and they are so relieved to know he or she has not been forgotten.

To those that have remained with us, thank you. To those that have not judged us, thank you. To those that have not received a well deserved, traditional, thank you card, thank you. {sending those cards and ordering the headstone are so finalizing, hence I just can't bring my self to hit the purchase button on my full online cart} 



I will wrap up this post my encouraging you to find 
JOY in your journey, like Jordan did everyday. 

Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing. James 1: 2-4

Because Jesus was raised from the dead, we’ve been given a brand-new life and have everything to live for, including a future in heaven—and the future starts now! God is keeping careful watch over us and the future. The Day is coming when you’ll have it all—life healed and whole. {reference from 1 Peter} 

Because of our promised future in heaven, Joy and Sorrow can co-exist. 




Thursday, March 28, 2019

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. 

Wednesday, March 20, 2019

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!