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.
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