Tag Archives: ALD

Our uninvited guest.

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What if ALD had never found its way into our family?

I used to ask myself this question every day, sometimes several times a day. The answer was so clear. It was sugary and sweet — in technicolor. Without ALD, our family would be perfect, free of fear and any complication.

Eight years into this new life and I have a harder time seeing the answer. It’s buried under piles of experiences, which have all been a least grazed by ALD. The disease is so much a part of our lives that now it almost makes me feel uneasy to think about life without it. As if it’s the disease that holds our family together.

So much has happened with ALD as the center of our family that it has distanced us from who we all were before those letters entered our lives. It sneaks its way into every part of our day and every plan for the future.

Our lives are constantly forced to adapt so that ALD can fit. Whether it’s adding a solid hour to the morning routine or the need for an extra suitcase (for the pee mats and diapers) when we travel – YES – we travel (we’re NOT going to let ALD win completely). We plan every outing taking into account where bathrooms are private and things aren’t too crowded. Jack likes to touch pretty things, including fresh flowers and teenage girls. We always need to be prepared for wandering hands and awkward explanations. Even our future plans have been altered. Discussions about an empty nest have been replaced by talks of single story living and full-time help.

ALD has not been a welcomed guest, but there has been some good that has come out of our unexpected visitor. ALD makes us constantly jump out of our comfort zone and tackle things that we never would have imagined. Jack has adapted remarkably well and lives a life that, despite its complicated challenges, is broad and quite wonderful. Anna is studying science with the goal of stem cell research. I’m not sure that such a thing would have entered her mind without witnessing the power of nature and the power of science. Dan has learned how to juggle a successful career, while being a supportive lacrosse dad and a hands on hiker with his hopping boy. I’ve learned that I’m stronger than I ever realized and have the ability to manage a family under unbelievable circumstances. And, that I am not scared to share the ins and outs of our family’s experiences – not something I would have guessed I would do.

Generally, I’m impressed at how well our family is doing – proud even.

An old friend wrote me a note last week saying, “ . . . it’s crazy how the thing you think is the worst thing in your life, could turn out to be one of the best. The challenge of a lifetime has made you appreciate your family all the more.”

Sweet words, but I’m often quick to fight these kinds of remarks. I want people to understand that this is not the life I would have chosen for our family. That I don’t believe that it’s a gift. I don’t want to confuse the universe into thinking that we are content with all this – WE ARE STILL LOOKING FOR THAT MIRACLE.

But, as time marches on, I do agree that there are things that we need to embrace. Things we’ve learned. Things that have made us stronger, maybe stronger than we ever could have been without ALD. Still, I wonder what our family would have looked like if that little mutation hadn’t set up shop. The problem is that I’m starting to lose my ability to imagine life without our uninvited guest. It seems that ALD has become a permanent part of the family.

Love, Jess

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May 2007

Never easy.

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Jack turned 17 this summer. 17 is the magic age in New Jersey when you’re granted the ultimate symbol of independence – a driver’s license. His birthday had come and gone without much thought of what he was missing, but lately I find myself driving down the streets of Maplewood, horrified as I see familiar faces behind the wheel of large SUVs. Faces of children who’s diapers I changed.

Not only does it seem dangerous to trust these kids with cars, but it’s another reminder that Jack is no longer moving at the same pace as his “typical” peers. He will never drive. He can’t even sit in the front seat of our car (that’s not a safely thing – it’s that he changes the radio station and loves playing with the heat warmers).

So, I’ve been feeling a little melancholy with this added reminder of Jack’s lack of independence, and then on Friday I got hit with the other side of things.

Further proof that I live between two worlds — Anna has just completed Driver’s Ed. She walked in from school on Friday and announced that she “passed the test”. I tried my darndest to sound happy for her, and I am. I’m looking forward to a day not filled with pick-ups and drop-offs. I’m also excited for her to gain the freedom that a license can provide. But, when I think about handing the keys of our car to our perfect little girl. I start to panic.

Life is never easy. I’m both sad for my son NOT to get his license and I’m freaking out that my daughter WILL.

Luckily, we still have some time before Anna can get her license. Even after passing the test, she can’t even get her permit until June – thank goodness we live in New Jersey. I need a little time to prepare for this next stage of worry for this mama raising kids in two separate worlds.

Love, Jess

Love That Max

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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 CNN.com, Today.com, Yahoo, The New York Times’ blog The Motherlode, AOL, MSN.com, MTV.com 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

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Coming home is even better.

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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

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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

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May the force be with you.

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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

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Joaquin

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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.

How are you?

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“How are you?” It’s a question we hear several times each day and mostly it’s answered without too much thought. “Good.”, “Fine.”, “Great!” — all acceptable options.

Are you ever tempted to REALLY answer the question? Have you ever met someone who really wants the truth?

The last couple of weeks I’ve been teetering between two extremes. Whiteboarding has been remarkable. Jack is clearly reading and able to answer most questions. It’s great until he gets bored — then he just looks at us and circles everything (I’m pretty sure it’s his way of saying FU). The inconsistency has me a little discouraged. As much as I prepared myself for it not being a miracle, part of me hoped that it would be the beginning of true communication. And, maybe it will, but for now I’m left feeling proud/excited/grateful AND frustrated/bummed/cranky — depending on the minute.

I also finally finished the book, Smiles and Duct Tape — Journaling to a New Normal,  last week and sent it off to it’s next step. The relief of having completed the project, and the anticipation to see where/if/how it lands, has me fired up. But, it’s also left me wondering what’s next.  So much of the last couple of years has been spent at my computer reliving the first 1000 days of our journey and reflecting on how our family adapted. Suddenly, I’m feeling a whole lot less secure than I claim to be in my book – like the writing was keeping me grounded.

I’ve felt so off that I’ve avoided much social time, but yesterday my manic mood and I met up with a new friend. I’m not much of a believer in fate, but it was a series of rather unusual circumstances that brought us together. Initially a mutual friend, then Listen to Your Mother, then a disease. Ours ALD/his AMN – same gene, different details, but something that links us and had us eager to meet in person. So we met and “How are you?” was answered easily and very honestly.

This new friend is much more than a man with a “complicated” gene. He’s a father, a husband, a friend, a motivational speaker and a life coach. We shared our stories of ALD/AMN and quickly felt like old friends. When I asked about his career as a life coach, he briefly explained and then offered to show me some techniques.  I wasn’t really sure what to expect, but with his kind eyes and clear questions, I was quickly spilling details of my history and goals for the future. I hadn’t realized how much I had spinning around my brain. I walked away with a new friend (or a guy who will soon block me on Facebook) and so many ideas.

I got home juggling all the possibilities, excited about starting a new chapter. Then, life got in the way – dinner, diapers, dogs. My mood quickly swung back in the other direction. At least I got a peek of where I might be headed. I’m hoping my mood will stabilize soon. Hopefully Jack will come home from school today ready to answer some questions and I may need some more conversations with my new friend. But for now, don’t ask me, “How are you?” unless you want the real answer.

Love, Jess

whiteboarding

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I said in my last post that progress doesn’t always follow a straight line, but it looks like Jack may be full steam ahead with his latest accomplishment. We call it WHITEBOARDING!

We present Jack with a question (either verbally or in writing) and write three choices on his whiteboard. He circles his answer. His circles can be a little haphazard, but they’re legible enough to be clear. We’ve asked questions that have specific correct answers and questions that provide Jack with a decision. He’s able to answer everything without any trouble.

It’s remarkable, but we’re still quietly clapping (although we are chilling some champagne). We just want to see if Jack’s brain continues to cooperate with his new skill. And, I’m a little nervous that Jack is being so nonchalant about his new ability – as if he’s done it forever. He’s potentially just broken down his biggest barrier, and he’s acting like it’s no big deal. My only explanation is that not talking hasn’t really bothered him too much.

Everyone else, of corse, is thrilled by the idea that Jack is gaining a voice. The doors that could open for our little man are endless. He can tell us how he’s feeling and what he wants to do. He can be part of the conversation.

My only complaint is that I now feel obligated to ask all three of my roommates what they want for dinner. One luxury of having a silent child is that I could make some decisions for him. Going out for meals has been especially fun, “I will have the spinach salad with the dressing on the side. My son will have the bacon double cheeseburger with a side of french fries.” There are NO calories if you don’t order it for yourself.

8 things we’ve learned this week:

1. Jack can absolutely read. We’ve been making him prove it all week long.

2. One Direction is his favorite band. Better than The Beatles, The Grateful Dead, and The Stones (Dan is a little upset, but he’ll get over it).

3. Jack still prefers waffles to pancakes, and does NOT like eggs.

4. I leave him on the toilet too long.

5. He’s done watching anything having to do with “Real Housewives.”

6. Jack knows who “Bad Dog” is.

7. Victoria Justice is cuter than Zoe (from Zoe 101), but he still loves Zoe.

8. He wants a tattoo and an earring.

This morning, as Jack and I sat on the front stairs waiting for the bus, I wrote, “How do you feel about your whiteboard? Love it, It’s okay, Sick of it.” He looked at me, laughed and circled “Sick of it”. Then he threw his arms around me and gave me one of his killer hugs. Sorry Jack, but this one is here to stay (I hope).

Love, Jess