Wednesday, April 15, 2020

When the days are different.

On Monday, our day started out as usual.  Feeding, vest, treatments, school time.  By the afternoon Lillian was doubled over in abdominal pain.   Crying, hanging on to me, begging me to stop the pain.  I pulled every trick out of my book to help and then I prayed.  This went on for several hours.  We skipped her "lunch" feeding and she sat in painful cries and tears.  By evening, I think she had thrown up or dry heaved several times, I think out of sheer pain.  We talked and decided to give her half of her next feeding.  She never had any huge results of anything by way of a bowel movement or gas and by night she took her whole feeding and slept.  Her sleep seemed a bit more restless, but beyond all that she seems to be fine now.  It was such a stressful few hours.  I think we were all highly concerned. She seems to have had no other issues since.  By night, once I had time to quiet, I became frustrated.  Fear tried to rise up.  It is so so so so hard to care for someone who can't really communicate.  Let me rephrase, it's hard to care for my child who can't communicate.  Thankfully, i guess, I've learned to ride the wave.  I've learned patience in waiting.  While all I really want is the "easy button", one just does not exist.  

In my crazy, I started to think about all the kids who are home for the time making their parents crazy with all the talking and no doubt fussing and all the things and I was jealous but for a moment.  

Multiple issues have arisen in my house over the last couple weeks, not to mention grieving the death of my aunt.  I've felt battered and sad.  I've focused on this verse in particular, "So we don't look at the troubles we can see now, rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever." 2 Cor 4:18 (nlt)   

I can't control the tiny body that my child struggles in, but I know the One who does. I can only do the best I can to protect her and take care of her and that's where I'll rest, for someday, she will be free from what ails her (as will those who have given their heart to Christ).  I can't say I'm totally always at peace with a life that may not include her.  My aunt loved Jesus, she gave her heart to Him.  She was still afraid of dying.  I get it.  My heart understands it.  I will focus on what lasts forever.