So many of you saw my slight mental lapse on Instastories last week when I mentioned that Brennan will be having another surgery very soon. Since this will be our 8th time around the block and will probably top off our 100 days in a hospital in a year, I wanted to shed some light on what it’s really like having a “sick” kid and some ways family and friends can be of assistance during various hospital stays.
Brennan’s situation is quite different than that of other sick kids we know because from the outside, he looks completely healthy. The fact that he is not hooked up to any machines or has any obvious physical deformities throws people off when we give them a list of the things he can or cannot do. Although I would assume its common sense (it’s not!) we still need to remind people constantly that they CANNOT under ANY circumstances be around him while they are sick (yes, even with your “teeny tiny cold”). I know another mom whose baby is even more at-risk than Brennan carries around masks for others to wear if they are hoarding off illness. As I’ve mentioned before, the risk for illness is why Brennan is unable to attend daycare of any kind, even if it’s only during Bible Study or a Mom’s group.
Two weeks ago we had quite a scare when Brennan came down with Scarlet Fever. He had no symptoms of strep throat, and was not around anyone who was sick. The ER doctor nonchalantly told us that he likely picked it up off something he touched at the grocery store or even a hymnal at mass. As a parent of an immunocompromised child, this was infuriating to me. This brings me to my first tip of helping out families with sick children: If you are sick, stay home. While driving kids to school or even going to work sick is at times nonnegotiable, going grocery shopping and going to church is. The germs that you are leaving with everything you touch could mean a week or more in the hospital if the wrong kid gets infected. Thankfully we escaped with just a 9-hour hospital stay and some heavy antibiotics, but we have had ER visits send us straight back to Children’s, too.
When we were in the hospital with Brennan, we tried to keep our mom’s updated so they could filter the info and pass it along to well-meaning family and friends. I also updated my personal IG (when I had one) to give info to my friends as I saw fit. This being said, unless you are the mother or father of the sick child at hand, you are not entitled to any information (this includes pictures or gazing at sensitive surgery sites). So, tip number two, be patient. I guarantee you that we are processing medical info as fast as we humanly can without a medical degree, and are haunted every moment (especially while in the hospital!) about making the right calls for Brennan’s health. The last thing I want to do is repeat myself for the 18th time because a family member decided my mother’s answer wasn’t good enough for them (and spoiler alert: I will ignore you).
While the parents of a sick child are processing all that medical info, they also need to be focusing 100% on being mom or dad to their little guy or gal. This only gets more difficult the more kids you have (Sylvia, you rockstar). We are trying to create a fun and loving atmosphere in a tiny hospital room and keeping spirits cheerful despite the constant blood draws, vitals checks, and at times, recovering from major surgery. This is absolutely exhausting, let me tell you. And no, the hospital is not free baby-sitting (someone has actually asked us this…) so we cannot just do what we please while our child is lying in bed in pain. The last thing a parent needs is to feel even more stressed, or even guilty about the care their child is getting. This includes negative comments about hospitals, doctors, or the medical decisions made by a carefully selected care team. Tip number three: Know when to keep your mouth shut. In the past, we have had completely unqualified family members and friends grill us about surgery or medicine choices for Brennan and I know this has happened to other parents as well. I no longer have the emotional energy to appease such stupidity. I will state for my family that we have selected the best possible care team for Brennan and we do not even utter a breath that is not out of complete love and devotion for the health of that child. We do our research, but we do not claim to know better than his doctors. We are the parents-you do not know better than us (even though you are older, a nurse, have a friend’s cousin who may have a kidney problem, etc). Period.
I understand that some people just cannot help, well, helping. As I just mentioned above, unwanted advice or opinion on a delicate medical matter is usually not the way. There is one surefire way to the heart of my family and that is through prayer. Tip number four: Pray for us. When someone tells me that they’ve started a Novena for Brennan or prayed a Rosary for us that day, it re-centers my thinking and brings me back to why we’re here at all: God’s glory. Those two words are extremely difficult to keep at the forefront of your mind when your kid isn’t healing like they’re supposed to, you are realizing just how different the rest of your life will be, or you realize that yes, you will very likely bury your child (whether it’s in two years or forty). If God has done something awesome in your life, or you want me to pray for you (I have a lot of suffering to offer up, folks!) please reach out. That gives this thing purpose when it feels like one big crap-shoot.
Some people have asked what they can tangibly do for the families of sick kids so here we have tip number five: FEED THEM. They have so much to think about, and likely a lot of driving to and from appointments or hospital stays that food is usually the bottom of the priority list. When we first got news of Brennan’s upcoming surgery, a friend brought over gluten-free lasagna the next day. I cried with joy because through all the hustle and bustle I’d forgotten to grocery shop and Liam was working 15 hour days. While we have stayed in the hospital, so many random people gave us Starbucks gift cards or gift cards for the local take out places in the shopping center only walking distance away. These small acts of kindness are priceless to our family because first, we never remember to feed ourselves past a random bag of MnM’s, and second, because driving hours away to get care plus the rising medical costs of hospital stays and dozens (yes, dozens!) of prescriptions make getting take out seven times in a row a little daunting.
I hope many of you won’t need to heed this advice for a long time (or ever) but there was a time only 14 months ago that we thought we wouldn’t need it either. I will post #kidneybaby part 4 once we have a surgery date and further info.