Joy to the...Special Caregivers

It's the most wonderful time of the year.

Well, it's suppose to be.

My attitude lately has, frankly, sucked. I don't want to sound like a broken record on this blog, but a hospital stay impacts a family for weeks afterward. Once Jaycee came home, I took over her intense care, which included nebulizer and vest therapy treatments every 6 hours around-the-clock for almost a week. Her oxygen saturation monitor beeped and alarmed multiple times a night for that first week home too. Basically, the tiredness I felt when I arrived home from the hospital with Jaycee grew exponentially.

Besides the zombie like state I was in, I didn't have time to process the whole situation until we were home when I had a second to think. This whole illness began with Jaycee turning blue at home. This has happened now more times than I can count. Years ago, Jaycee responded to her emergency medications, and her breathing would stabilize. This time, like the past few blue moments, the emergency medications were not completely working and she was ripping off her oxygen as I was trying to put it on. Can you say stressful?

I haven't even told you how my child hit and kicked me and the nurses in the hospital as she fought off the necessary activities that needed to be done while there. That was exhausting physically and emotionally. She was scared, so I wasn't upset with her. But, her resistance to touch continued when we came home, and I needed to touch her for one of her temporary but extremely necessary medications. I dreaded the two times a day I had to approach her with these medications at home because she would not calm down. Yep, that first week post the hospital was hard.

The combination of lack of sleep and the stress made for my less than desirable mood for the last few weeks. This season usually brings me joy. I love shopping for others, looking at Christmas lights, and the season of giving and kindness. I have had moments of happiness, but there's been lots of sadness, tears, and frustration with things that have happened lately.

Sometimes, it is hard to be a person of faith and stay joyful in times of trouble.
You want God to rescue you, and it's hard when it doesn't happen. It's harder when an illness (or problem) happens again and again. You want to make sense of something and find a way to have hope that things will be better.

There's something important that I need to keep reminding myself.

Heaven is perfect. The Earth is not.
Heaven is where my daughter will be free from sickness. Heaven is where I won't be stressing about her numbers on a monitor. Heaven is where we'll have perfect peace.

On Earth is where we are though. I want many years on Earth with my daughter too- don't get me wrong. But, the Earth is full of things that God neither wanted or planned for His people. I forget this sometimes. I forget that things aren't always going to perfect on this imperfect planet.

That's why the Lord's prayer is so powerful in moments when you feel God isn't in your situation. Your kingdom come. Your will be done on earth as it is in heaven.

I'll keep reminding myself to pray. I'll keep telling myself that I can have hope for a better future for our family. I'll tell myself that things were hard for a bit, but those tough times don't have to ruin future times that bring opportunities for joy.

So my fellow moms of children with medical or developmental diagnoses, I hope that during this Christmas season, you are finding joy. I hope you can shut out the chaos in your life right now and find peace. I hope that recent trials aren't souring your mood, and you can enjoy the fun times with your family today. I'm certainly going to try to do this! A sugar cookie or two may just help. 😊

⁹ In this manner, therefore, pray:

Our Father in heaven,
Hallowed be Your name.
¹⁰ Your kingdom come.
Your will be done
On earth as it is in heaven.
¹¹ Give us this day our daily bread.
¹² And forgive us our debts,
As we forgive our debtors.
¹³ And do not lead us into temptation,
But deliver us from the evil one.
For Yours is the kingdom and the power and the glory forever. Amen

Matthew 6