Disco
“In your pain and in your struggle,
find a place to dance. Look for a moment to celebrate.
Find a life giving truth and hold it close. ”
I like to celebrate. We need to carve time out of our lives to do more than the daily grind or weekend warrior workouts. God gave His chosen people different times every year for feasts and festivals. I believe joy is in our DNA. We need to find excuses to cut loose.
I know there are other pieces of life that should not be celebrated (have you been reading this blog?) . I tend want to just remember the victories, the celebrations and distance myself from the defeats. I want to highlight the successes and dismiss the losses. I want sunny and 70 with no clouds in the sky. Yes! Rainbows and unicorns for everyone!
But life is not a steady climb upward and onward. We do not progress through life in straight lines. Maturity embraces both defeat and dancing.
The following are two medical blogs written back to back. The first is a snapshot of a major set back. As if the weight gain, loss of hand and leg strength was not enough. There was more to overcome:
September 26, 2015
It has been a tough week for Josiah. We ended last week on a high note. He went to school last Thursday and Friday for the whole day. But this past week he was only able to go a few times for part of the days.
Ever since Josiah was diagnosed with DIPG, he has been asked whether he had headaches or nausea. Since he has a tumor in his brain stem, it makes sense to have increased pressure headaches and nausea coinciding with loss of balance or double vision. But he has never struggled with either… until this week.
On Monday, he went down to his lowest dosage of steroids before going completely off this upcoming Monday. He had a low grade headache on Tuesday and Thursday morning. He took a little pain reliever and was fine. We told the team of doctors on Thursday at Children’s during our normally scheduled appointment.
They checked him out and were very pleased. I noted the headaches and they assured me that there was no increase of pressure (checking his eyes). Therefore the headaches were probably due to seasons changing. (I’ve had a slight headache all week as well.) They said to proceed with the steroid wean.
Friday AM he woke up in the middle of the night with a really bad headache. Then in the morning he had his first bout with nausea. I kept him home with my parents, hoping it is some type of bug. He got a little better throughout the day but needed more pain reliever. He went to bed a little early but with good hopes this would be behind him today.
But at 5:30 this AM, he woke thinking he was going to throw up. He didn’t and went back to sleep. Yet when he woke up a few hours later, he wasn’t able to fight the nausea and the headache was full on again. So he drank some water, took his medicine and is now back in bed.
Pray for discernment on how to move forward. Is it a bug or is the tumor causing these issues? Should we continue on the wean, stay the same or increase? We all, especially Josiah, want him off the steroids. But… he feels awful. I’m contacting the team this AM. Pray that he feels better and the light returns to his eyes. Pray that his strength returns so quickly, he will want to go to school on Monday.
Thank you for your prayers and support. It means the world to us.
The struggle was real. We had to increase his steroids again. We were so close to a successful milestone to celebrate but instead there was defeat.
October 4, 2015
After the increase of steroids over last weekend, Josiah’s nausea and headaches have stopped. We are grateful that those symptoms have ceased, but it is at a cost. Nothing hurts a parent’s heart like watching their little one suffer languishing in pain. Be it when Josiah dislocated his thumb on the first practice of little league a couple of years ago or when he is squinting at you through a throbbing headache like last weekend, it hurts your heart as a parent. So I was very glad the immediate pain of the headache and the throwing up stopped. But we all knew that going up on steroids was a step back.
All of us, especially Josiah, were excited about going off steroids this week. His present weight and the ancillary problems associated with it are difficult for my nine year old. It is an obvious outward sign of his inward struggle against this tumor invisible to our eyes. Therefore being weaned off of the steroids meant a whole lot more than just beginning the journey to lose the 40 or so pounds gained over the past few months. It meant that he was getting better.
Yet, it was not meant to be. He is currently on just one mg a day. It isn’t much but it seems to be enough to keep “things” at bay. So we’ll see if it is safe for him to come down later… how much later, we do not know.
One of the new symptoms that arose along with headaches and nausea was a loss of balance. We had thought this was just coming from the new physical struggles. But his ability to remain steady on his feet is still not the same. Therefore he asked to use the transport chair at school.
I am so proud of him. The humility and honesty it takes to know and tell others you need help are traits rarely seen in others. He could have just decided to avoid school and the difficulties associated with getting out and about. But no. He simply spoke the truth about how he was doing and what it meant for him to carry on. So I set up having the chair ready for him when I dropped him off at kiss and ride...
After his first day back at school, I asked him how he did. He shrugged and said it went well. I asked how he felt and whether his balance was any better. He said, “No, not really.” I assured him that it was okay and that he didn’t have to do any dancing anytime soon. But he replied, “No Dad, I can dance.” He rose slowly off the couch and stood up. He pointed his right finger down across his chest, then he raised it to the sky. “I can disco.”
We busted out laughing together. So amazing. I’m so thankful. What an attitude! Bring on the next bridge to cross.
I do not know your struggles. I do not know your defeats. Setbacks suck. Pain is awful.
In your pain and in your struggle, find a place to dance. Look for a moment to celebrate. Find a life giving truth and hold it close.
Don’t deny your pain. Don’t try to bury it in “sunshine” and “positive thoughts”. Own them. Confess them to a friend, counselor, or pastor. Please remember the suffering is not you. The pain does not define you. You are loved. The One who loves you loves you more than you can comprehend.
Whatever battle you have to win, He is the Mighty Warrior who fights for you. He delights in you. You give Him joy. He is overjoyed and will not look at your wrongs but see you in His light. He does not see your problems as you. You are His love. How much does he love you? He is singing you a song.
“The Lord your God is with you, the Mighty Warrior who saves.
He will take great delight in you; in his love he will no longer rebuke you, but will rejoice over you with singing. ”
Might you hear His song for you and dance… even if it’s disco.
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