Every time I hear about another family preparing for their child's heart surgery, it takes me right back to that emotional whirlpool we were in. It's a vivid reminder of the fears, hopes, and prayers that consumed us. I recently revisited a post I had originally shared on our Caring Bridge page, which is now part of my book, "Always a Blessing. Never a Burden." It's a raw look back at what we were going through, and I wanted to share it again, but in a more condensed form.
As I read through these words, it's almost like stepping into a time machine. So, let's travel back to that moment in time when this post was written.
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The Day Before M's Fontan Procedure
M's Fontan procedure is finally set for tomorrow morning after being rescheduled three times. I'm a bundle of emotions—fear being the most dominant. My mind is a cocktail of faith, science, hope, and anxiety. It's a tough drink to swallow, but we're not the first to walk this path, and we won't be the last.
Writing is my way to unload the emotional weight. It's how I make sense of the chaos in my head.
My Worries
- I don't want my child to die - open heart surgery is scary shit and I cannot bear the thought of losing him. Every time I have even the slightest thought creep in, I try quickly to erase it and say to God, "no, no, no - take this thought away please; M is going to kick ass and rock this thing".
- I don't want him to be scared
- I don't want him to be in pain
- The aftermath of what this surgery means - this surgery will not fix M; it will improve his quality of life, but this is just a temporary fix. The goal of this surgery is to get him to the next advancement in modern medicine. That is scary and I know that advancements are coming, when he will need the next intervention, we don't know.
- That his body will have a hard time adjusting to this new flow, that he will develop one of the many possible side effects that can come with this surgery, protein-losing enteropathy, pleural effusions, liver failure, kidney failure, heart failure
- That his personality will be changed somehow; either that he will be scared to go to the doctor after this or that he could suffer brain damage or memory loss from being on the heart and lung machine during surgery
- That he will have scar tissue attached to his heart
- That he will have a bad experience with the PAT testing tomorrow, difficult blood draws, long echocardiogram
- Collapsed lung after surgery
- The medications that he may have to be on after surgery
- Him waking up and being scared
- Not being able to extubate immediately
- The swelling
- Getting him to eat again
- Constipation following surgery
- Being bored and not understanding why we cannot go home
- Missing our animals
- Missing home
- Having to put on a clinical hat and play nurse, doctor, Mom and wife all at the same time
What I'm Looking Forward To
- Seeing him after surgery and knowing he is OK
- Holding him again, hugging him again
- Seeing his eyes open
- Hearing his little voice and knowing he is my M
- Telling him that he makes my heart smile
- Playing music for him in recovery - his favorite songs, including, "Shut up and dance with me"
- Seeing him run or walk up the steps and not get winded
- Hearing him say, "home sweet home" when we pull into our garage
- Seeing him play with the neighbor kids again, Zak, Gavin, and "Nova" (Noah), specifically
- First day of school
- Avengers live in October
- Hearing him say, "Mommy play with me"
- Watching him give Toby and the kitties a hug
- Having him back at home in our bed to sleep and snuggle in between us, with elbows, knees and toes in our backs and mouths
- Hearing his scampering feet across the floor
- Trips to Target
- Giving him his Batman cave when we go to the step down unit
- Spending quality time with him and Joe while in the hospital
- Feeling of being uplifted from thoughts and prayers coming from all over the place
- Being able to attend weddings and events in September because he has rocked this and we are home, safe and healthy
- Joe 's birthday, Halloween, Thanksgiving, and Christmas
- Seeing the posts on the M4M Virtual Run page
- Having M kick off the next M4M Run, live event in 2016!
The lyrics of "I Don't Want to Miss a Thing" by Aerosmith keep playing in my mind. It captures the essence of wanting to hold onto every precious moment with M.
Going through this journey has been humbling, to say the least. Thank you to everyone who has stood by us. Your love and support mean the world to us.
It's hard for me to imagine that this was eight years ago. I'm so grateful for a relatively normal life now. We have had our challenges and have a lingering cardio appointment coming up next week where we will learn of the next plans for his next intervention that is needed. I am beyond thankful that we have that opportunity.
If you are getting ready to embark on this journey of handing your child over to a surgeon, it is OK to be scared. It is OK to be hopeful. It is OK to share. It is OK to clam up. Whatever you are doing is the next right thing for you in this moment. It's not fair. One breath at a time, one step at a time. You WILL get through this.