Monday, November 12, 2018

And a hug around the neck


Thursday, Ben had the procedure to remove the cyst on the side of his neck. Thank you so much for all the good vibes, prayers and virtual hugs. He sailed through just fine and was back to his usual happy self when he woke up Friday morning. I'm still recovering.

Having a child undergo any medical procedure is scary, but it can feel even more intense when you have another child who's been through serious trauma: hospital PTSD is real. For me, the hardest part of the entire ordeal was holding it together for Ben and not seeming anxious. It's been nearly sixteen years since Max was born, and I was surprised by how potent the PTSD still is.

We were at the hospital—the one where Ben was born—at 8:00 a.m, for the MRI; they needed to do a scan to pinpoint the exact location and size of the cyst. We signed the papers. Turns out a machine part was broken, and so we waited. Poor Ben hadn't eaten since the evening before, and he kept asking for snacks. Then he got upset when we had to put the hospital pj's on. I cuddled with him and sang the first song that came to mind: 

I love you
A bushel and a peck
A bushel and a peck and a hug around the neck....

And I totally choked up "neck." Because oh, his sweet little neck with the lump in it. Because I was worried about the anesthesia and the procedure and him being in pain and all of it. I rubbed my eyes so Ben couldn't see my tears and I kept singing. Finally, the anesthesiologist arrived to give Ben a sedative so he wouldn't freak out about the anesthesia mask or even remember any of it. "It's like having two glasses of wine," she said. Too bad there was no such drugs for me. (I am planning to patent Mommy & Me Valium.)

Within a few minutes, Ben was woozy and very happy. As I carried him into the MRI room he murmured, "Is my bump gone?" When I laid his head down on the table, he looked downright giddy. The doctor and I sang the ABC song to him and he was out. 

"Mom, you have to leave now," the anesthesiologist said, firmly. I forced myself to walk out of the room and I burst into tears. I didn't just see Ben lying there on the MRI table. I saw Max lying in my arms in a hospital bed the day after he was born and turning blue. I saw Max lying in an incubator in the NICU, unconscious, with tubes hooked up everywhere. I saw Max lying in a hospital bed after he'd had a grand mal seizure at age 15 months. I saw Max lying on a gurney at age 8, knocked out so he could get Botox injections to loosen up his hands. 

I didn't want to sit in the waiting room with hordes of other anxious people, so Dave and I found a couple of seats in a hallway and we settled in. Two hours later, we found out that Ben was headed into surgery. I distracted myself with Facebook and magazines and I non-distracted myself by repeatedly asking Dave what he thought was going on in the OR. A patient manager came by to say everything was going well, and when I got all teary I explained that we had an older child with disabilities who'd been through a lot when he was born. She nodded. "You never know what people have been through," she said.

The surgery took an hour and a half. A nurse told us Ben was awake but woozy and out of it. I asked if I could hold him, and she went to check. We called Max and Sabrina, who were with our sitter, to tell them Ben was OK. The nurse came back to bring me to the OR. Ben was all riled up: he was wailing and trying to stand. But he was attached to an IV and they were worried he'd rip it out, so they gave him a little more sedative. I sat on the gurney, holding him. When he woke he was again agitated, but a little less so. Finally, he calmed down. I gave him some apple juice. He nodded off.

I'd been hoping we could go home that day, but the doctor wanted Ben there overnight in case he needed pain meds. They wheeled us to a room. Ben's left hand was wrapped in gauze so he couldn't rip out the catheter and he kept trying to unravel it. I gave him the lollipop I'd promised him, and he fell asleep sucking it. Dave brought us dinner then went home. The smell of the room was getting to me—hospitals always have that distinct odor—and I tried to distract myself by thinking back to our stay there after Ben was born and how baby-like he still looked when he slept. 

Ben didn't seem to be in pain when he woke up. He touched his neck. "I have a new bump!" he said, and I told him it was going to get better soon. The doctor stopped by. He said the cyst had extended from the front of Ben's neck to the back, and that he'd injected the drugs in two different spots. He pointed to the red pin pricks. It will take eight weeks before the swelling completely goes down, and we'll see if the cyst is completely gone. The doctor said we may not know for sure until Ben has a cold. If a lump appears, part of the cyst remains and we'll need to go through another round. 

Ben ate a bunch of saltines. I gave him some healing Nerds—the boy loves his candy. He watched Paw Patrol on his iPad. A monitor started beep-beep-beeping because he'd kicked off the wire on his toe for his vitals, and when no staffer showed up I went over to the nurse's station, pointed out that it was going off and said that someone needed to be on top of that. (See: hospital PTSD.) We wandered around the ward. Ben studied the list of names of kids in the pediatric ICU to find his. He told me that the "M" in "M/F" next to each name stood for "Mommy."

We had a restless night. But in the morning, Ben woke up smiling. He ate well from the smorgasbord on the breakfast tray. We played peek-a-boo with the room-dividing curtain. And then, we were released and we took a bus to Aunt Judy's house, downed snacks and took a four-hour nap. Max and Sabrina fell over themselves giving him kisses when they came to pick him up. 

The swelling on his neck is going down every day. This weekend Dave and I chilled with the kids and saw Bohemian Rhapsody on Saturday night (singing that in a movie theater is pretty cathartic). I did a bunch of yard work, my go-to form of therapy. Ben was a trouper, and I'm praying he doesn't have to go through this again. For now, I am so relieved it's over.

Friday, November 9, 2018

The Disability Blogger Weekend Link-up: voila!


What to do if you're new  

This is a place to share a recent favorite post you've written, or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: Sometimes we don't have the answers but our children do

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Thursday, November 8, 2018

Send good vibes to our little guy today


Two years ago, I went to visit a friend whose son had been sick. I brought Ben to cheer her up. As we sat in the kitchen, Erica pointed to Ben and said, "What's that on his neck?" Sure enough, there was a bulge. Ben was a chubby tot and I hadn't noticed it among his neck folds. It turns out it was a cyst or, rather, a macrocystic lympatic malformation. The mass was benign and relatively small, and it caused no pain or discomfort, but it needed to come out. Every time Ben got a cold, we had to watch the area to make sure it didn't turn red, a sign of an infection that could have proved dangerous.

In another it-takes-a-village moment, a blog reader, Susan, emailed to say she knew a doctor who might be able to help. Well, that excellent doctor knew the guy in New York City who treated such things, and it is he who will be doing the procedure today. It involves injecting a minute dose of two chemotherapy drugs into Ben's neck to shrink the cyst, hopefully to nothing, although there is a chance we'll need to do a second round. Ben's discomfort, we were told, would be nothing that Tylenol couldn't soothe. We'll be able to see if the cyst is gone only after two weeks go by, once all the neck swelling decreases.

We've told Ben that the nice doctor is going to be taking the bump out of his neck and that he will be sleeping, and when he wakes up he will get a lollipop. He keeps asking about the lollipop, and I appreciate that he's focused on what's important. Max cried this weekend when he realized the surgery was coming up, but we've continuously reassured him that the doctor is very good and that Ben will be fine and he's calmed down. Sabrina remains worried.

The doctor, Alejandro Berenstein, has performed hundreds of these procedures. He actually pioneered the field known as interventional radiology. I have complete confidence in him. And yet, I am terrified, starting with the fact that little Ben has go to under anesthesia. And that chemicals used to kill cancer are going to be injected into my baby's body.

So please send my little guy good vibes and prayers—we’ve got the lollipops covered.

Wednesday, November 7, 2018

Do some random good in honor of the Rosenthal brothers


I haven't stopped thinking about David and Cecil Rosenthal, who were among the 11 people murdered at the Tree of Life * Or L'Simcha Congregation in Pittsburgh on October 27. I feel a connection because of Max—From what I've read, the brothers had a sweet, helpful disposition, similar to his. My friend Paula noted that she could see Max being a greeter at our temple, just like Cecil and David were at theirs. Monday night, I checked the Facebook page of ACHIEVA, a center based in Pennsylvania that provides support for adults with disabilities. The nonprofit had posted a beautiful tribute to the "boys," as they were known to friends and family.

We can't make sense of the events at the Tree of Life but we can choose how we react to them:

React with love.
Offer a smile.
Reach out to those in need.
Treat the next person in line.
Lend a helping hand.
Include someone new.
Live cheerfully.
Trust others.
Don't wait for happiness. Create it.

Let's show we are stronger than hate.

Join our group.

Live like the Rosenthals.

Love like the boys.

The Facebook group mentioned is Love Like The "Boys." ACHIEVA started it to encourage people to do random acts of kindness in honor of Cecil and David. Some people painted stones. Someone had paid for someone else's dinner. The nonprofit We Finish Together was sending a group of medals gathered from athletes. Volunteers from the group planted 11 redbud trees at a nature reserve. Yesterday morning, at my company's cafe, I bought coffee for the next person who showed up in line with one, and I thought of the brothers.

Random acts of kindness has been a thing for years now. But it's especially meaningful to do goodness to honor the kind, loving ways of David and Cecil Rosenthal. Let's.

Image: Love Like The "Boys" Facebook page

Tuesday, November 6, 2018

Sometimes, we don't have the answers but our children do


Ben's third birthday party was last weekend. We were a little worried about how Max would behave, given his meltdown at the family birthday dinner we had for Ben a few weeks ago. We spoke with him a number of times about Ben having a special birthday day, just like Max enjoys special birthday days. We told him he could bring his iPad and hang out in a quiet room. We figured we could tap my sister to chill with him if need be. In the end, Max had the best idea of all.

The party was at a kiddie gym, right up Ben's alley: His favorite activity at home is moving the little ottoman in our living room close to the couch then leaping off it. Max was pretty excited about the party, too. A couple of people on staff remembered us from ten (TEN!) years ago—we'd had a joint party there in 2008 for Max's fourth b-day and Sabrina's third.

Soon, Ben's preschool friends showed up and they zoomed around the gym, tumbling on the mats and swinging on the bars. Then the guy in charge brought out a giant rainbow-colored parachute and kids grabbed hold of the loops on the edges, floating it up and down.


Max stood right behind Ben, encouraging him to hold on. After that, the kids started tossing basketballs and I lost track of Max...until I realized he was standing to the side, taking videos with Dave's camera. That's what he did for the rest of our time in the gym.


And there you have it: Max voluntarily took on the job of recording the party for all posterity. I instantly realized that we should have put him in charge of something, tapping into his pride for being helpful and being a great big brother. We were in parent autopilot mode, doing what we've always done for busy, noisy events: making sure that Max stayed calm. Max has matured—clearly, we have to as well.

When it came time to blow out the birthday candles, Max bent over to help Ben, who was determined to do it himself though he came dangerously close to setting his train conductor hat on fire. I averted disaster by sneaking in a blow. Then Ben sat down to enjoy his birthday cake, shoveling it into his mouth as fast as his hand would go. Max sat next to him and smiled happily at his little bro.

Monday, November 5, 2018

Can you ever do too much for your child?


The other weekend, Max rode in a fire truck in a parade. This would be pretty remarkable, except for the fact that he had done it the year before. Dave's dad lives in Tarrytown, NY, hometown of Ichabod Crane in The Legend of Sleepy Hallow and one of the most incredible Halloween parades around. Last year, Grandpa Michael ambled into the fire department and asked if Max could ride in a fire truck in the parade. They said yes—it was that simple. This year, Grandpa Michael asked again and once more, they said "Sure!"

Dave took Max, and kept texting photos. Max looked out-of-his-head happy; the firefighter he rode with, Melissa, couldn't have been nicer. Win! And yet, I wondered if this was a total Good Thing. Were we setting him up to think that he could get whatever he wants in life? I did my best to explain to Max that it is a really special thing to ride in a fire truck in a parade, but I am not sure he totally understood.

At times, we go all out to make our other kids happy, too. Ben likes slides of all kinds, and we drive to destinations near and far to find cool ones. Sabrina is into sneakers, and we enable her growing collection. Max's passions tend to be a little more involved. We have repeatedly gone through car washes a couple times in a row, bought him a whole lot of purple clothes, wandered throughout Home Depot to pick out appliances for his fantasy house in Orlando and, once, got his favorite firefighter and fire truck to show up at our house.

This desire to do anything to make Max happy dates back to his early years. Dave and I were so despondent about what happened to him that we tried to compensate for what we considered the bad hand Max was dealt. We no longer feel that way—Max is Max, and his disability is one aspect of who he is. But there is still a part of us making up for his stroke and now that Max is older, I'm more aware of this and how it affects him.

I think one answer is to find more ways for Max to give back so he's not just a recipient of goodness but a giver, too. Recently, Max gave a fire safety Powerpoint presentation to his class and he came home so proud of himself. Next weekend, we're making pumpkin pie for his favorite fire department.
I took Max to a program at his school this week; students from a local high school hang out for an evening of activities. When I returned to pick him up, a girl was pushing Max around on a PlasmaCar.

"Max, aren't you kind of old for that?" I said.

But, no. His friend was laughing and Max was laughing and who knows, maybe next time Max will be pushing someone around on that car.

Friday, November 2, 2018

The Disability Blogger Weekend Link-up has arrived


What to do if you're new  

This is a place to share a recent favorite post you've written, or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: The blessings the murdered Pittsburgh brothers leave behind

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Thursday, November 1, 2018

Never say never about your child...sometimes


Months ago, I got it into my head that we should be The Incredibles family for Halloween. Max was obsessed with the movie Incredibles 2. Plus we had the right mix of kids—two boys and a teen girl. I spent entirely too much on the costumes, figuring I'd take a chance. Because I never know how things are going to go on Halloween.

When Max was little, the holiday terrified him: the crowds and the noise at our town's Halloween parade were sensory overload, and costumes scared him. The year Max turned five, he suddenly got into it. 


Still, every year we never knew what Max would be up for—would he dress up? Not always. Trick or treat? Maybe. David and I would just conquer and divide, one of us hanging out with Max, the other taking Sabrina trick or treating. 

Starting last week, we had Incredibles defectors. Max informed me that he did not want to be Dash. Dave noted that his costume was itchy. Sabrina said she wanted to hang out with her friends. That left just Elastigirl (me) and Jack-Jack (Ben). OK, then. 

The day before Halloween, I asked Max and asked what his latest thoughts were on being Dash. He said, "Fire hat!" As in, he wanted to be Dash wearing a firefighter hat. Cool! Yesterday, I ran home from work. Dave put on his itchy costume. Sabrina agreed to be a little late to a party with her friends. She styled Ben's hair so it kind of had that Jack-Jack spike on the top and off we went. It was truly incredible.  

We walked around trick-or-treating for a good hour. Ben kept saying "I want more candy!" Max kept saying he would like to go to Disney World for Halloween next year. Sabrina kept saying, "I'M LATE FOR MY PARTY!" Our neighborhood was filled with the spirits of Halloweens past: that time Max was in his purple phase and begged a homeowner to let him have their purple pumpkin in exchange for his orange one (we still have the purple one). Sabrina as Ariel, her tail sweeping the sidewalk. The house where Max first said "Trick or treat!"  

After Dave and Max dropped Sabrina off at her party, they headed to Home Depot, Max's home away from home. Me and Jack-Jack hit a bunch more homes before we settled down on our front porch to hand out candy to kids.

The thing about the milestone-like moments is that they are even sweeter because once, you never could have imagined they'd happen. All of us out as a family, in costume, enjoying Halloween. When you're in the thick of helping a child who has sensory issues or other challenges, it's almost impossible to think that life will ever be any different. You learn to make peace with your child (and family) doing holidays, events and whatever their own way. 

But what I've also learned is that you never can say never about certain things, because you just don't know. Our children: so incredible. 



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