Tuesday, January 22, 2019

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!

Thursday, January 10, 2019

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