Love That Max

Love That Max is a blog I’ve followed for years, and I am not alone. The blog is currently the #1 disability blog by traffic ranking and a Babble Top 100 Mom Blog. It has been featured on,, Yahoo, The New York Times’ blog The Motherlode, AOL,, and The Daily Mail, as well as in Redbook, Real Simple, Parents, Good Housekeeping, Woman’s Day, Family Circle and All You magazines.

Ellen Seidman is an incredible writer and an inspirational mother to her three children. I’m honored and excited that she shared my piece, When my son communicates, will he share our secrets?.

Please take a peek and cross your fingers that Jack doesn’t have any secrets about you;-)

Love, Jess


Coming home is even better.


Jack laughs with his whole body. His eyes water, his mouth opens and he utters a hardy chuckle, as his entire soul shakes. It’s one of the few noises our boy produces and the sound melts my heart.

The only time we want to quiet the giggles is when he’s eating. Jack’s laughter is so strong that anything in it’s way gets displaced. Food gets spit out, even through his g-tube (the little hole in his belly used to medicate and hydrate). It’s hard to feed Jack around Nonno, Uncle Matt, Uncle Pat or Ronny V. Those men say a word and Jack is in a frenzy.

Dan and I went away last weekend. Our annual excursion to see our dear friends, the Fitzgeralds. We spent the weekend enjoying the scenery of Maine and catching up with old college friends. Time with people who knew us “before” is critical to our survival. Yes – they ask about the kids and we share photos and stories, but it’s a fraction of the weekend. A relief to just be Jesse and Dan for a few days. In our real life, sometimes our identity gets lost in a pile of medical jargon and politically correct words for “disabled” and “handicapped”. With this crew, most of our chats are about music and memories.

The weekend away had the added benefit of no medication, diapers, or early morning dog duties. So odd waking up with nothing on my mind except a bit of a headache. It was perfection. Great meals and wine, hikes, boat rides and even a tour of Portland (thanks JK). But, when Monday rolled around, we were more than ready to get on the plane, anxious to hear Anna’s stories of the weekend and hear the sweet sound of Jack’s laughter.

We walked into the house on Monday to find Maria (Jack’s sitter/my favorite person EVER) cooking a beautiful dinner and Jack holding court at the island. When Anna heard the door, she flew down the stairs and there were hugs all around. We had dinner as Dan and I told the kids stories about the weekend. Anna loves hearing tales of her parents pretending to be twenty and Jack was so thrilled to have his parents home that anything we said was greeted with a smile. Once we were done eating, it was time for some real laughs. It was so good to be home.

Getting away is wonderful, but coming home is even better.

Love, Jess

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I need to keep an eye on Dan

My husband is a cheater. I really think he has been hiding this from me for at least a week. I noticed the little smirk on his face every time I mentioned it, but he kept telling me that I was crazy and just needed to work a little harder.

Then this morning, while he was in the shower, I checked his cell phone. I found the app and I hit “sync”. I had my proof and I stormed into the bathroom, “What did you DO last night Dan?”

He peeked out from the glass shower door with a funny expression, “Jess, I was home before 11:00. You were sound asleep.”

“If you were asleep before mid-night how did you already get 1550 steps today!”

Generally, I am not very competitive. I’ve had my Fitbit for two years and I’m usually more than content reaching my 10,000 steps a day (about 5 miles). It means I’ve walked the dogs enough to keep them healthy and moved my body enough to fit in my mom jeans. Occasionally, I do except a “challenge” (where you compete with other Fitbiters), but only with people who are 10,000 steps a day folks – I don’t really want a “challenge”, just enough motivation to walk extra mile or two.

Last week I found Anna’s rarely used Fitbit and told Dan he should give it a shot. He gets frustrated by his lack of time to exercise during the week. I thought tracking his steps might be interesting to see how much he’s really moving during the day. I also wanted him to see what an active wife he has — no bonbons and relaxing for me;-)

I downloaded the phone app, set up the Fitbit and showed Dan how to use it. “And, I set us up for a challenge. Won’t it be fun?!”

Last week he beat me by five miles. It nearly killed me, but I rationalized that his commute was good for a couple of miles a day and he had a ton of meetings last week. The weather had cooperated enough for him to walk from meeting to meeting. THAT would never happen again.

This week I set up my schedule so that I could walk two times a day. I added some other “friends” to the challenge and was ready to show everyone that Jesse is the Walking Queen. No luck. No matter how many steps I took, Dan was ahead of me. I asked him repeatably if he’d check to see if his Fitbit was working and he made me feel like I was being silly.

This morning after our confrontation in the bathroom, Dan started getting dressed. He was teasing me about being paranoid, and I was starting to feel rather foolish. Then I looked down at his phone and realized that he had just earned 79 steps by putting on his tie.

I don’t just want to be Jack and Anna’s mom, Dan’s wife, an art teacher, a writer, a pharmacist, a driver, a model (don’t laugh — long story) — I WANT TO BE THE WALKING QUEEN (at least at 26 Clinton Ave. – my other “friends” are beating me too)!! I made Dan switch arms to see if we can get on an even playing field. We are going away this weekend and I’m going to keep a keen eye on my man. No funny business Dan!

Love, Jess


May the force be with you.

IMG_4310Entertaining is one of our choice pastimes. Sometimes the cocktail hour is extended and dinner gets a little held up, but our guests never complain (at least not to our faces).

Dinner parties for eight are a favorite over here, but we’ve also enjoyed a few full houses — celebrating 40th birthdays, college reunions, etc. All good times, but only one party resulted in lives saved. Six years ago we hosted a party that we called Jack’s Bone Marrow Birthday Bash. It was just after Jack’s 2nd transplant birthday and right before his 11th traditional birthday. We made hundreds of sliders, had coolers of juice boxes next to a keg of beer, and my mother made a beautiful cake. The only price of admission was that you needed to walk through our front door and consider joining the Bone Marrow Registry.

Several of our friends helped manage our dinning room filled with information. We had the necessary paperwork and were ready to swab the cheek of anyone 18 or over. We didn’t put undo pressure on our guests, but we did remind people that Jack was celebrating his birthdays because of the kindest of a stranger. We registered 79 people that day.

Yesterday I got a note from a friend of a friend , Michael Steiner, who stopped by that day to give his DNA. Last month he donated bone marrow to a boy in Germany who is fighting leukemia. Michael is the second person from our party who has given hope to a family. Statistics show that 1/540 people will be a match in their lifetime. Our statistics seem to be more like 1/40.

Here is a note from Michael. I think you will enjoy his honestly and sense of humor.

There’s a scene in STAR WARS (1977) where Obi-Wan Kenobi gets the message from Princess Leia: “Help me Obi-Wan Kenobi, you’re my only hope.”  What a terrible movie it would have been had he said “Nope.  I’m fine here in my cave.  I got my Tusken Raider (Sand People) neighbors and those creepy, feely, midgety Jawas all over the place.  I got a good situation here, and I’m staying put.”

When the call came from Be The Match (“Leukemia … some teenager somewhere … very, very sick … you’re the best match … more testing … you might be able to help him … “)…  My immediate feeling was I had won something.  Like the numbers on my lottery ticket matched the numbers in the newspaper.  (Nice branding, “Be The Match”)  

And I couldn’t say no, no more than Obi-Wan could have said no.  Had he said no, that would have been the end of the movie, the end of the franchise.   We live for sequels.


Some time mid-June I got a call and letter from Fran from Be The Match.  Fran prepped me for the following:

— Some teenage boy in Europe was sick with Leukemia, and I was found to be the best match for a marrow donation.  Turns out, the organizations don’t share more information than that.  Before Fran shared the little bit of info about the recipient, I tried to tell her I’d rather not know anything about him/her; the idea was that some people, like my wife, would never be satisfied with any level of detail.  Plus I was just happy to help someone.  Who the person was was completely irrelevant.
— I can’t just walk in and donate tomorrow.  I need to have a battery of tests and clearances, and I needed to donate a pint of my own blood, which I would get back after the “harvest”.  (Love the word “harvest”.)  None of the prep was very interesting, but I did get to take my shirt off a few times in front of doctors and nurses, and that was nice.

— Gunter (my name for him because I figured he was likely German) would have 10 days of aggressive chemo before my donation that would just about kill him.  This was the only frightening part of the entire process for me.  They were sharing this information with me because if I bailed at the last second, Gunter would perish shortly thereafter.

— The “harvest” would consist of general anesthesia, me on my belly, tube down throat for breathing, doc drilling above glutes into pelvis in 4 places and sucking out about a liter of marrow.  None of the details were very interesting to me.  I was just looking forward to having some scars on my ass that I could justify dropping my pants for people to see.  

When I told my friend Joe that I was going to do it, he said, “Don’t.  This is a horrible idea.”  Then I said, “Wait, you don’t understand.  I’m going to be almost completely naked, unconscious, lying face down, with people standing around me in white gowns and poking at me…  It’s going to be just like college.”  And he said, “Wow, that does sound like fun.  You should do it, and see if they can get some good pictures of you while you’re out.”  

When I told my wife, she said, “You know I don’t like driving in New Jersey, so you’re going to have to find your own ride back and forth to the hospital.”  She admitted that she would do it too, if she got the call, but she’d be very uncomfortable with the whole thing.

When I told my neighbor Ford, he said, “I’m so jealous,” and I said, “This isn’t about you, you know!”  HA!

When I told my neighbor Dina, she just said, “Sounds fun.  You need a ride?”

When I told my parents, they were very happy for Gunter, and for me.

Another time when I was sharing the Obi-wan reference with Joe, he said, “Yeah, but you know Obi-Wan dies, right?”  And I said, “Duh!  Everyone dies, stupid.”  And he said, “Good point.”

— My recovery would take from 2-10 days … but count on 7 days of ice, rest, pain medicine as necessary, taking-her-easy, no heavy lifting etc.  This is not because the bone is weakened.  It’s because of the trauma to the muscle in the harvest area, and the achy pain there could throw me off my game of whatever I was doing.  My eyes got very tired very quickly from all the rolling.  I knew an up-sell when I heard it; Fran and the doctors and nurses had to make sure I was prepared for the worst.  My recovery was easy: 3 hours of sleep immediately after getting home from the hospital, the next day I could walk albeit slowly, but by 48 hours after the procedure, I could walk up stairs two at a time.  The only things left were a sore throat and a stiff neck from the tube, and a dull ache above the buttocks. 

I cannot remember who or what brought me to the Torrey’s house 6 years ago.  Most likely it was one of their      neighbors who invited me to stop by her house party to do the swab, and I’m not one to go to a party and pass on putting something in my mouth, especially if everyone else is doing it.

And I’m glad I did.  It’s nice to think about a part of me living on and helping out a relative (we’re all related if we go back far enough).

It’s one month since the surgery.  According to Fran, different countries have different rules about what they will share about the recipient.  But every country that participates in the registry is required (at a minimum) to tell the registry if the recipient dies after receiving the donation.

So “no news is good news” as they say.

And as they say, “May the force be with you, Gunter.”

May the force be with you, Michael!!

Love, Jess




I woke up this morning discouraged. My weekend plans are a bust – all my preparations and shopping weren’t necessary. Joaquin is going out to sea.

I know I’m not not alone in my disappointment. Anna commented this morning that she’d been hoping for a long weekend, “I don’t want destruction or anyone hurt. Just enough flooding to cancel school for a couple of days.” And, go on Facebook (or maplewoodonline) and you’ll see that there are plenty of people that have spent a huge amount of time this week discussing “hurricane force winds”, “tropical depressions” and “cones of uncertainty”.

Storms bring us together. They give us all something to talk about and “weather” is pretty safe topic – it sure beats gun control or marriage equality (both of which I support wholeheartedly, but don’t necessarily want to chat about with the UPS guy).

Neighbors rally together to share their homes and fridges following a storm. No one cares who they’re voting for or where/if you go to church. Storms are a great equalizer. Perhaps it’s that storms don’t care who you are. Nature is blind as it barrels in. We’re all fair game and need to stand together to get through it. Storms bring the best out of people.

So, I’d been hoping for a little weather to distract me from my worries and get me reacquainted with our neighbors. I was ready to fill the bathtub and hunker down. I still have one eye on the Weather Channel, hoping that Joaquin might make an unexpected turn west. Nature always likes to keep us guessing.

Love, Jess

P.S. My heart goes out to everyone in the Bahamas. I, like Anna, don’t want destruction or anyone hurt. Simply a good storm to take a few days off and hang out with my neighbors.