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 

No clever title...

Nope, no clever title this time. This is raw. This is real. This is our life.

Tonight I am rearranging my 3 year old's room, not to make room for Christmas toys, just to make sure his emergency equipment is more readily available and better accessible. I am watching his monitors to make sure that there are no adverse side effects from the 9 medications that I just pushed through his G-Button. I am emptying out the bags from the hospital stay that we just got back home from, the hospital stay that I thought might be our last hospital visit ever.

I was sitting last night in his hospital room weeping, watching the monitors, watching his chest rise and fall with every breath and screaming "this isn't fair!" and it's not fair, it's not fair that he struggles to do things that we take for granted everyday, like breathing, eating, going to the bathroom, seeing, talking. I get angry. I get furious. I think horrible thoughts about the person, if you want to call it that, that did this to him. Sometimes I stop and pray, sometimes I don't. Last night I didn't and my sweet friend was there sitting with me and asked "Where is your faith?" and I thought for a second and I didn't have an answer, no Sunday school answer, no lie to tell her, nothing. I had nothing.

Where was my faith?

Where was God?

Why did He just allow Jordan to go through 25+ seizures?

Why did He let him get hurt?

Why did he let my friend's son die?

Why doesn't he have a cure for brain injuries?

Why did he choose me to take care of Jordan?

I have never questioned those things before, I KNEW that God had a plan for Jordan and that He had a plan for us. I KNEW that God would give me the strength I needed to take care of him, the strength that his brothers would need, the dedication that Jeremy would need to his family. I KNEW God would provide all that.

So what was different about last night? I still don't know what was different. I know Satan had a hold of me because so many people were lifting us in prayer. Satan doesn't need the weak ones, he wants the strong ones, he wanted me and he had me right where he wanted. I was full of fear and doubt and anger and rage while asking others to pray for us because I was just too tired. Hurting so much, I couldn't even pray.

My sweet friend left and I went to sleep shortly after that.

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This morning Jordan woke up smiling, laughing, like he had never even had one seizure.

The doctor made rounds and we discussed the prognosis, the care Jordan would need and the new medications. It was not a fun conversation. Just days before this all happened our AMAZING night nurse told us she would be taking another job. Which we were happy for her but what did that mean for Jordan, especially now? I trusted her and now we have to find a stranger to take care of our sick boy. I posted on Facebook that we would be needing an additional nurse and moments later I got a text from her
     
                "I am not going to take the job in Lawton. Only being able to take care of Jordan on my days off wont be enough. I'll still miss him" and later on "...I know I won't enjoy working anywhere as much as I enjoy working with Jordan"

She decline a sign on bonus, shorter drive, and more pay.

There was God.
       
Next I get a text from a fairly "new" friend, back in Nocona, we aren't THAT close but we are very similar and she knows my heart which goes a long way and is so important to me. She asked if I had a few minutes to talk and after I got a shower I went down for breakfast and called her. She asked what we needed and then she prayed for me. She prayed for my heart and for strength and for the fear to be gone. She prayed for everything I was lacking.

There was God.

I got back to Jordan's room and was cleaning up and packing our stuff up. There was a knock on the door. In walks a lady with two pillow in her hand. She say's "I am the pillow fairy and I want to give Jordan a pillow!" This may not seem like a big deal, its just a pillow, right? Wrong. Sunday afternoon before he started having his seizures I was washing his "Cook pillows". Cook pillow are hand sewn pillow cases with the PERFECT size pillow inside that fits perfectly between his legs when we have to reposition him at night. I have never found these kind of pillows in the store. When I pulled the pillow out of the case to wash it, it just came out in pieces. Our Cook pillow was no longer useable. Last night I told my friend "I really wish we could get one of those awesome pillows they give out to patients sometimes."

There was God.

Twenty minutes later my phone rings, it was that precious friend from Nocona. She was calling to get my address and let me know that that she made some phone calls and people throughout the school district had volunteered to bring us meals for the next several days. What she doesn't even know is that the next several days we don't have nurses and Jordan requires constant supervision for the next couple of weeks, I really wasn't sure how I was going to even cook dinner if it was a game night and there would only be one of us at home.

There was God.

A few minutes later another knock on the door. A volunteer walks in and behind her THE MAN IN THE BIG RED SUIT, it was Santa! Santa came over to Jordan's bed and Jordan reached up held on to the white fur cuff of his suit. I sobbed. I looked at Santa and looked at Jordan and I couldn't help but think "what if this is his last Christmas". That's the reality of this life. That is OUR reality. Santa came over to me and gave me a big hug and prayed for me and whispered "Santa knows your need prayers for Christmas".

There was God.

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I still don't have the answer to why God allows bad things happen. I don't know why he took my friends baby boy. I don't know why He thinks that Jeremy and I are capable of taking care of Jordan. I do know that He never left me in those dark moments yesterday and His promises are true and He will ALWAYS WIN!

I don't know how many more Christmases we will have Jordan or how many more times he will see Santa. We don't know if we should take him to all the Christmas celebrations incase it is the last one or if we should keep all stress to a minimum. No one knows the answer. Today we will just be happy for today and then we will do it all over again tomorrow and the next day.

Thank you to those that helped me find my faith when I couldn't see and prayed for me when I couldn't speak. Thank you Jesus for showing up big today and opening my heart to receive.

Love on someone today. Someone needs YOU and you probably don't even know it.