Documenting…

I have hesitated on writing this post this week.  I just don’t know that I have the right words, but this blog has been a place for me to document the journey we’ve been on with Harper, so here goes…

This weekend was a big one for our family.  A year before Harper was born, my husband joined the military (as a reservist, not full-time!), and God really began a big work in both of our hearts, and it didn’t take long for my husband to realize God was calling him into ministry as a chaplain.  It took a little longer than that for him to accomplish that- years of schooling, ministry ordination, applications and paperwork and interviews, and loads of prayer, but he finally did it, and we were blessed to see him commissioned this past weekend.

We had a great day planned on the base after that with family day activities that are held once a year- music and food and games and an air show.  The family was all there and we got ourselves set up in the middle of the masses.  The girls were playing on the bouncy houses and Harper was singing and dancing for everyone… and out of nowhere, the seizure came.  She lost her balance and tumbled down the inflatable slide, but seemed okay at first, but then came the crying and confusion that we have been seeing right before a seizure starts.  I was able to hold her on my lap for the first few moments, but then we had to find a way to lay her down safely- a difficult task as we were in a big asphalt parking lot surrounded by people.

We got her down on a towel and one of us held her head as someone else timed the seizure, and as we got close to four minutes we had to administer her rescue meds.  We had the help of the medics on base and they called an ambulance- it was all a blur of commotion.  Her seizing slowed down after the rescue meds, but she was not conscious and her oxygen saturations were lower than normal, so they transported her to the ER via ambulance.  She was stable by the time we arrived at the hospital, so they just monitored her for a bit and let us take her on back to the hotel.

Harper did not sleep well that night, and had one more seizure that I know of.  We packed up and headed home, and she began to get sick.  She developed a cough and a fever, which have now been with her for three full days.  We have seen the doctor and had the usual tests, but no clear indication of what is making her sick at this point.  Our last stop today was at the hospital for a chest x-ray, and she became terrified when they pulled out the gown for her to wear.  She now associates gowns with bad things (she says that’s what they make her wear when they make her go to sleep), and cries whenever she sees one.  So we settled on topless x-rays today! (**Update… we now know she has the start of pneumonia in two places in her lungs)

The culmination of events hit me tonight at dinner as Harper prayed.  Every night Harper says the blessing- it is her thing.  And her blessing is always the same- “Dear God, thank you for this day.  Thank you for this food.  Amen.”  She is a creature of habit.  But tonight her prayer suddenly changed.  “Jesus, please help me feel better.  And please help me not to have to go to the doctors anymore.  If I have to go, please help me be brave.  Amen.”

I think my heart may have broken into a thousand pieces.  This girl is the bravest girl I know.  She is a warrior, and she faces every day with courage and joy and faith.  And I can see how God has been working through her precious life since day one, and I know that His plans are for us and that He is good.

But tonight I want her to catch a break.  I want her to not have to be brave.  I want her to not have to see doctors all. the. time.  I want her to not be terrified at the sight of a hospital gown.  I want her to not be knocked down so hard by every little sickness that comes around.  I want to go to sleep at night and not worry that I may not hear her if she seizes.  I want to go through a week (or even a day) without the thought of losing my child crossing my mind.  I want to rejoice on our good days and not be waiting for the chair to be kicked back out from under me.

Today as we drove to the doctor, Harper asked for a song, so I played one of our favorites.  It’s a long song, and there is a lot of repetition, but sometimes I just need to remind myself of who God is.  Harper sat in the backseat with her eyes closed and sang this song, and I found great comfort in the words… “Way maker, miracle worker, promise keeper, light in the darkness, my God, that is who You are…. Even when I don’t see it, You’re working.  Even when I can’t feel it, You’re working.  You never stop, you never stop working…”  Regardless of what I see and how I feel at the moment, He is making a way, He is working miracles, and He is keeping His promises.  That is where I rest my heart tonight.

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