Since Bodie was diagnosed with heart failure, I have been in such a rough place, emotionally.
Outside of the fear of the unknown, which obviously is a big factor, it was more.
Bodie has always been such an inspiration to other families of children fighting with congenital heart disease. I didn't even realize how much of an inspiration he was until he got sick in November and people started coming out of the woodwork to tell me how much our journey had affected theirs, how much HOPE Bodie had given them as they started their own CHD journeys.
Bodie has always been a kid who has suffered complications, but has pushed through and had a pretty amazing quality of life in spite of his hardships. He has provided so much hope to newly diagnosed families, who could look at Bodie and say "wow, look at him! You'd never know he was sick - he looks like a regular kid and lives a regular life. If he can, maybe my child can too!"
But the heart failure changed all of that on a dime. I kept watching Bodie struggle, thinking "how can we give hope to newly diagnosed families anymore? No newly diagnosed family wants to hear that a 6 year old HLHSer suddenly goes into heart failure and is in and out of the hospital and that his parents are scared out of their minds."
I was really struggling with trying to reconcile this sudden shift for Bodie.
And then an amazing veteran heart mom reminded me that hope is "living with half a heart and waking up to find joy and optimism and be kind another day. That's really all it is. That's hope. It's not about perfect health. It's not about perfect labs or perfect test results or straight A's or being able to play sports...my son wakes up every day and chooses joy, optimism and kindness and that, is what hope looks like."
And I realized she was right.
I am always grateful for this mom and her wisdom (her HLHSer is an adult now, so she has lots of it!).
But I was especially grateful for her words on that day.
I needed to hear them.
Things are still scary for us.
We spent all day Wednesday in the ER with Bodie, with what we were afraid was worsening heart failure. It turned out his heart is stable, maybe even improving just a bit (thank God!), and what he had was just a bug.
He seems to have bounced back and is on the upswing again, thankfully. We are so grateful for that.
We are on a roller coaster, to be sure.
But, even so, my friend is right.
There is still so much HOPE and INSPIRATION to be found even in this part of the journey.
Today, on the last day of an unquestionably rough year for our family, we hope newly diagnosed families can look to find HOPE in this.
Our boy is HAPPY.
The day after being in the ER all day, he was touring a space museum with his grandparents and family, running and laughing.
Instead of having grandma and grandpa here because we needed help while he was in the hospital (which we did), for that moment, we got to be a family just going to the museum with grandparents in town for the holidays.
That night, he hit another regular 6-year old milestone, by losing another tooth!
Yesterday, he was able to take a hike and explore God's beautiful creation.
Because we're so close to this, walking day in and day out in this very scary place, I sometimes forget to take a step back and look at the big picture.
My son has a half a heart.
A half a heart.
And that heart has some serious communication issues with itself.
But, thanks to the the power of prayer and modern medicine, he is still here with us, bringing us more joy than we thought possible.
At the end of the day, this journey is scary and the turns are bumpy and unexpected.
BUT our son, even so, is happy.
He wakes up and chooses to embrace life.
He is funny, he is smart, he is happy.
He knows Jesus and understands the importance of that relationship.
We are blessed every day by him.
Big picture here.
We are so so blessed.
Fighting to find joy and happiness and gratitude despite the difficulties we face.
That, my friends, is what inspiration looks like.
This 6-year old should inspire you.
He inspires us.
Amy.... I'm sure your blog & wisdom help others as well as provide a record of this journey called LIFE!!ReplyDelete
In spite of the horrendous bumps in this year's journey, Bodie's smiles demonstrate his joy of life and love of family.
Sending you best wishes for the NEW YEAR!
You are an inspiration of joy amongst the struggles. Thank you for sharing you heart with us. Continued prayers for all of you! May God continue to strengthen Bodie's heart. Happy New Year!ReplyDelete