** I will get to a list of practical things after a brief narrative, so bear with me! **
After Little Bear’s first surgery on April 13th, we thought maybe things would be okay. His incision started swelling within two days after surgery, I took him in to get checked out a week post surgery, then 5 days later, we ended up in the ER at Children’s because his incision had suddenly started leaking. I already knew what the protocol was because we had discussed it at length when he was still in the hospital after that first surgery. We rushed him in to Children’s, sat in the ER for an hour, then was moved up to the surgical center where Little Bear was taken back to have a drain placed. Surgery number 2 in less than two weeks. The protocol was monitor him for three days to make sure he didn’t have an infection and then decide whether to do a shunt or repeat the ETV (Endoscopic Third Ventriculostomy) and do a CPC (Choroid Plexus Cauterization) at the same time. He had an MRI before the second surgery to make sure the ETV was still open and working. When the drain was placed, his surgeon checked the ETV and found that yes, it was still wide open. Which meant that while the ETV was technically working to drain excess fluid from Little Bear’s brain, it wasn’t working enough.
Friday the 28th was the third surgery. And we decided to go for the CPC. His surgeon wasn’t ready to give up on the ETV yet and after asking quite a few of his colleagues, he said he felt comfortable doing the CPC. Que waiting, once again, in the waiting area of the surgical clinic, passing the time and watching the clock. Two hours later, his surgeon came out and said he felt really happy with how the surgery went. Another half hour and the anesthesiologists came out and said Little Bear was on his way to recovery and they felt things went well too. They came out to get me to take me back to Little Bear, and as soon as he was placed in my arms, I knew something was wrong. The very first thing I noticed was his eyes looked really unfocused even though they were wide open and flashing around. I asked if he could see all the while taking in that his limbs were stiff and he was making an awful grunting/gasping sound.
About 20 minutes went by of the nurses asking me interrogating questions about Little Bear’s behavior, them calling down the anesthesiologist, then calling back his surgeon when they realized he wasn’t reacting to the morphine and his heart rate was extremely high. At one point, his oxygen levels plummeted and the nurses starting preparing the oxygen masks just in case he was going to code. As soon as his surgeon got to Little Bear’s recovery room, he said it looked like my baby was having a seizure to which everyone jumped into high gear. They gave him adavan and keppra to help stop the seizure then rushed him down to get a CT scan to make sure there weren’t any clots or hemorrhaging. The scan showed a pocket of air that isn’t uncommon after a brain endoscopic procedure. Uncommon or not, it was still one of the scariest things I have ever experienced. Even a week and a half out I am still feeling blindsided by the echos of the terror and panic I felt watching my child and the helplessness knowing there was nothing I could do.
All of that to say, there were multiples things that friends and family have done for us over the past three months that have been very helpful, and even some things that weren’t so much. So here’s what I’ve been able to come up with as far as practical tips about helping families in our position.
- Offer Specific Help –
I came across this article a few weeks ago and while it deals with sudden grief and trauma, I found it helpful. Being in the midst of a crisis (having to rush Little Bear to the ER, terrifying recovery after surgery…) means the ability to respond to “let me know if there is anything I can do for you” disappears. Someone came and got Little Monkey (since he was with us when we rushed to the ER) and took him to play with their kids all day while we sat at the hospital. Someone brought Phil and I lunch while we waited for Little Bear to get out of surgery #2. Someone came and stayed overnight with me at the hospital after surgery #3 so I could get sleep and somewhat relax knowing someone had eyes on Little Bear at all times in case he had another seizure. In the few weeks following Little Bear’s sudden arrival, we had multiple people just drop off meals on the front porch. We are grateful for everyone who has offered to watch Little Monkey, bring us groceries, drop by a meal, or to simply come sit with me so I’m not by myself at doctor’s appointments or at home.The more specific the offer of help, the more helpful it is. I am so grateful for those who have just dropped by a meal, stopped by the hospital, called or texted, or even just sent us a gift card to Starbucks or a meal delivery service. These are the things that have helped the most.
- Check In
This may seem like a “duh” thing, but I have had multiple people say they didn’t want to bother us or intrude so instead kept their distance. The thing that’s meant the most in everything we’ve been through is the people who have left a message, sent a text, or email, just letting us know they’re thinking about us. Even if we can’t respond to every message, knowing we’re not totally alone in all of this has helped a lot. I think in an effort to “not intrude” most people draw back too much and end up unintentionally isolating the family going through the difficulty. We will let people know if it’s too much, but don’t hesitate to check in.
- Don’t Take Anything Personally
I don’t think this has happened, but the emotions of having to deal with what we are facing are messy. It’s a big effing mess and some days I honestly just want to lash out and hit something because things are too much. The hardest part is as parents trying to wrestle with the overwhelming emotions that we’re facing. Unless you have been in the same position with your child, it’s hard to explain just how overwhelming it is. So if we don’t respond, or shut people out, it’s because things have become too much, but don’t let that stop you from checking in or offering help. Oftentimes it’s in those moments we need the most help or someone checking in means the most.
- Don’t Tell Us About Your Friend’s Brother’s Son Who Has ______
This is something that’s been happening since we first got Little Bear’s diagnosis. While I assume someone telling us that their friend’s brother’s son has spina bifida is an effort to relate to us or maybe even try to encourage us, it is the least helpful thing anyone can do for us. This applies to any sort of condition someone may be diagnosed with. Even though I don’t always care for this response, it’s better to simply say “I’m sorry you’re dealing with this…” than to tell us about your friend. Every person it unique, every diagnosis is unique. It’s very easy to get false hope by reading someone else’s amazing story who has the same diagnosis. It’s also very easy to become extremely discouraged and scared by someone else’s story too. So for the parents’/individual’s sake, do not share anecdotes about someone with the same diagnosis.-
and last but not least…
- Care Packages Help…A Lot
The random cards and packages we’ve had show up have helped make our days just a little easier. So if sending care packages is your thing, then send things that help the parents or individual take care of themselves. Whether it’s gift cards, something you know they enjoy (candy, makeup, bath bombs, candles, scarf, figurine, movie…), or a bunch of random quotes that mean something special, do it. The little things mean so much more when the rest of life is in major chaos.
I don’t mean for this post to feel like I’m pointing fingers or anything like that. I just know friends have been struggling with trying to figure out how to help us. These are the practical things I’ve been able to come up with both from watching others and from our personal situation.
Thanks for reading, and I do hope this post has been helpful.