I always enjoy reflecting on life at this time in our lives from 2014. I like to remember where we were and just think on how far God has carried us. KC was so sick and to make it worse we didn’t understand why. We were preparing for her to have open heart surgery in the hopes that surgery would at least help her suffering heart while the experts tried their very best to understand the cause of her lung issues.
I’ve shared about heart surgery and the absolute blessing in disguise that turned out to be but I’ve not shared many glimpses into the life of a heart parent in the months leading up to her surgery day. I’ve not shared what life looked like facing a scary surgery with a fragile kid.
We’d already missed out on her first scheduled surgery date because KC was so sick so the goal was to do everything we could to get and then keep her well. We are abundantly blessed with amazing family and friends and at the time it was hard to process and pinpoint needs but I think this is why reflection is so important.
From our side of things;
We took turns going out to public places so that we didn’t risk her picking up anyone’s germs. That means I went no where during work hours in the week other doctor appointments, picking up my oldest from school and occasionally I moved KCs oxygen tubing to the tank in the front of the house so we could sit on a blanket in the yard for fresh air.
We took turns taking our older kids to church on Sunday but limited most other public contact with others to minimize germ exposure. I’d never thought I could’ve missed eating in a public restaurant with my family as much as I did. We even missed extended family birthday parties and I felt completely isolated some days.
There were LOTS of sleepless nights involved. We would sometimes take turns sleeping in a twin bed in KCs room because her monitor would have especially noisy nights. Chances were it was just a bad connection on those noisier nights but your daughters ability to breath isn’t something you’re willing to chance. So awake one of us would lie in bed watching her monitor and her face for signs of distress. I often tried to stay awake until it beeped so I could quickly fix the cause and then I’d plan to try and get a stretch of sleep in which also resulted in a lot of sleepless time staring at a machine. This doesn’t include the restlessness that comes from knowing what your child will be facing.
Our other two kids, both under 5 at the time, knew what it meant when I asked what the monitor says KCs sats are. They understood where the normal range should be and when she was too low. We did our best to hide our fears and worries from their little minds but there were days that it was just plain hard. They knew what a nasal cannula was and probably how to tape it to KCs face. They definitely knew how to secure a pulse ox onto her toe. They knew far more medical terms and equipment names than I picture most average adults knowing.
KCs cardiologist and pediatrician were on speed dial. Thankfully they were incredible support throughout the entire process but I think most people would agree that those aren’t two people you want to be so dependent on and speaking to on a daily basis in regards to your baby. You want to be conversing with family and friends and scheduling play dates and strolling through a park or a Target wasting an hour before dinner time.
I say all of this not because I want anyone to feel sorry for us or any family battling CHD. I say it because I know it’s not the norm and people don’t just instinctively know what’s going on with a family dealing with CHD or how to help and I want to share my experience so others will know. These are things that were done for us that meant the world.
Bring them a meal and don’t bring your kids with you to drop it off. Not even your healthy kids. If you have to, drop the meal at the door for them or order something to be delivered. You might have to be pushy about them letting you help but It will mean so much to family feeling alone or isolated to know that you’re thinking of them. At very least, tell them you’re picking up some groceries. You can never go wrong with milk, fruit, toilet paper and few snacks. My dad always showed up with the best groceries on the weekend.
Send them a letter. I don’t mean an email or a message on social media. Mail them an actual letter or card that they can open and hold and touch and maybe even hang in their kids room or later in the hospital room. Not only does that remove some feelings of loneliness, mail is like finding a little surprise. It’s a change or a smile even in an otherwise typical day.
Send them a text or message or encouraging note that doesn’t need a reply. Maybe even tell them not to reply. Just let them know that they are on your mind or in your prayers and leave it at that. Sometimes the constant questions and reiterating of the issue going on is discouraging. I found comfort in those random reminders that KCs creator has already gone before her. My heart is completely overwhelmed with gratitude even today on my Timehop when I read through all of the many posts from people all over praying for our girl and our family who is carrying this weight with us and for every single medical personnel that would come in contact with KC.
Drop off a hospital care package for the upcoming surgery day. Fill a bag with snacks or magazines or anything that you think might be useful for a hospital stay. One of my friends dropped off a hand made banner with KCs name all over it and each section of the banner was filled in with an encouraging Bible verse. Some of the parents of our kids at church let their kids each pick out a small item for KC or her sisters for after surgery. Nothing was crazy expensive but it was all so touching to see how much even their young children cared for all of us.
Last, if someone decides to open up and share with you about how they might be feeling or the concerns they have leading up to this surgery day, don’t minimize it. If you don’t know what to say, that’s ok. Just don’t tell them, “it’s all ok.” Let them be sad. Let them be scared. Let them know it’s ok to feel this way. Remind them you are there to support them in any way and remind them how much you love them. Remind them how much God loves them. But don’t make them pretend like everything is ok. Let them feel what they are feeling. Just don’t make them feel it alone.
Thank you is not enough to express our gratitude to all of those that loved and supported us during this time. We are richly blessed by your love and care. In turn, you have made it my passion to serve and love others going facing the same CHD battle as us.
But my God shall supply all your need according to his riches in glory by Christ Jesus.