Tag Archives: special needs

46 ain’t so bad

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There is nothing sexy about being 46. You’re neither young and spry or old and wise. You still need to cover your gray and squeeze into skinny jeans, but you can’t really compete with the 20-year-old crowd (or the 30-year-old crowd). You’re just middle-aged. But here I am, and I’m doing just fine.

I’m not sure when I’ll get used to the increasing amount of lines on my forehead or how my legs crack when I stand up after sitting on the floor, but I feel blessed for the life I woke up to this morning.

A gentle kiss on my cheek from my husband with a “Happy Birthday” whispered in my ear. Then my sweet Banana came tiptoeing into my room and crawled in my bed to give me a birthday hug. As she left the room, I noticed that she had slipped a note under my pillow. I would share what she wrote, but I can’t – 1. She would kill me 2. It’s mine and I don’t want to share the magic. Jack can’t sneak into my room or write me sweet notes, but he did share his brilliant smile when I walked into his room this morning. He knows it’s his mama’s birthday.

It’s not just my family that warms me, my friends are an incredible bunch. I’ve always heard that when learning a sport you should practice with better players. I’m not an athlete, but I’ve always thought of this when choosing friends. Since I was a little girl, I’ve managed to surround myself with people who teach me, encourage me and make me want to be my best.

Not that my friends have been a group of saints. “Best” hasn’t always included intellectually interesting endeavors, or even healthy activities, but my friends have always been an assortment of people who I find remarkable. I just had a great lunch with a dear friend (thanks Kim) and look forward to celebrating more this weekend. And, thanks to technology, friends from all over my life have remembered my birthday. I’m feeling extra loved.

Lately I’ve been watching the two generation on either side of me and wondering where I fit. My parents and in-laws are spending their retirement years traveling so much that I have trouble remember where everyone is on a given day. And, Anna and her pals get to enjoy the benefits of teenage life, where their only real priorities are working hard in school and make it home before curfew.

Sometimes, I feel a little buried under the responsibilities of being a middle-aged grown-up, but today I’m just trying to enjoy the fact that I’ve accomplished quite a bit in 46 years AND hoping that I have another 46 or so years to go.

Thanks for the Birthday love! I’m a lucky (kinda old) gal!!

Love, Jess

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Happy tears

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We’ve prepared for this news for eight years. I’d worked so hard to be equipped for a different outcome, that I was not ready to hear the words, “Anna is NOT a carrier.”

I was in the middle of World Market with my cellphone pressed tightly to my ear, sobbing, asking to hear the words again.

When Jack was first diagnosed with ALD, we’d never heard of the disease. We had a difficult time understanding the way it had traveled down our family line without appearance – until Jack. An X-linked disease, carried by the mother. It effects only boys. My brothers seemed to have won a lottery, but my son was not so lucky. Nature is not fair.

Of corse the focus for our family has been to help Jack survive the disease, but a question has been asked a lot over the past eight years. Often in hushed tones with gentle hands gripping my arm, “What about Anna?”

My answer was always at the ready. Sounding confident and positive, I’d say that we didn’t know, but weren’t worried. Anna’s odds of being a carrier were 50/50. If she carried the disease the biggest concern was the gene spilling into the next generation. I’d list the variety of options Anna would have to conceive, if in fact she was a carrier. I’d go on and on about the wonders of modern science and finish with,  “By the time Anna is ready to start a family, there will probably be a simple cure for ALD.”

Here’s the truth — underneath that speech, I was terrified. ALD has stolen enough from our family and I wasn’t sure I could find the energy to fight with ALD again. While it would not be impossible for Anna to have children without the mutation, it would be complicated. Having children is complicated enough. And our family has been through enough COMPLICATED.

So for eight years I’ve been crossing my fingers, while trying to prepare for whatever news we would hear. We didn’t want to test Anna until she was ready, but as soon as she asked, we made an appointment.

Meeting with the geneticist last month was fascinating for our science girl, Anna. For her it was interesting and she approached the information like a research project. It was not as easy for me. I did my best to keep a polite smile on my face during the meeting and make the day as festive as possible. Anna has always been the most important audience for my “We are not worried” speech. I think I managed to get away with it because last night when Dan and I shared the news, her only question was, “WHY are you crying?”

We’re so thrilled with the news that I’m still weeping a day later. I hadn’t appreciated the weight of this threat until it was released. Our beautiful girl dodged a bullet. I think I’ll be crying for a while. Happy tears.

Anna’s always been a good student and this is just another test that she managed to crush!!!

Love, Jess

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Anna and I share a lot. I’m just glad that we don’t share everything.

My other silent boy

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For those of you who have been worried that I may be sharing too much with Jack, I’m sorry. It is true that he has heard more than a teenage boy should about local gossip and various peri-manopausal symptoms. I am trying to be better at avoiding such topics when Jack’s in earshot. And, it’s not just because I’m worried that he is going to blackmail me – it’s just the right thing to do.

The truth is that he is not the only holder of my secrets. I have another silent boy in the house who’s also a really good listener. His ears are floppy and he lets me lie on the couch with him and rant about everything. He never gets bothered if my breath is bad or my feet are stinky. He just snuggles in and lets me vent about things and sort out my crap. He is the one that people should be worried about – Keegan knows EVERYTHING about EVERYONE.

Things I am too scared to even write in my private journal have been shared with my furry friend. There’s something about the way he looks at me, that I know he understands and cares. Keegan’s brother, Finn (AKA “Bad Dog”), walks away in the middle of a story if he hears a truck outside or the postman walking up the front steps. Keegan never leaves my side until he knows I’ve really let it all out.

Yes, I know that technically Keegan is Jack’s service dog, but the truth is that without him, I’m not sure that I could manage. There are just some days that I feel like I am going to explode (or implode). Stuff builds up and I need someone. I can’t always burden my friends and family – particularly when it’s my friends and family that I need to discuss. We all need a sounding board and Keegan is mine.

Yesterday was Keegan’s 7th birthday. I tend to forget birthdays of people/creatures I love (just ask my nieces and nephews). Ironic, because I expect everyone to remember mine — November 19 — 13 more shopping days left. Keegan’s puppy raisers reminded me today and I instantly stopped what I was doing to showered our boy with some love. Then, I gave him a nice long walk and two cups of kibble for dinner. Next year, I promise to throw in some balloons and streamers.

Thank you Keegan for being Jack’s best friend and my therapist.

Love, Jess

For more information about Canine Companions for Independence check out: http://www.CCI.org

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A great listener and so handsome.

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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