Monthly Archives: November 2015

Thanksgiving

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Happy Thanksgiving!

Challenging lives are challenging. Okay — all lives are challenging, but add special needs and life does get more complicated.

Our family is lucky for a ton of reasons. The first is always SMILES. Jack is happy and that’s pretty amazing. He has every right to be frustrated and miserable and angry, but he’s not. All those people who bitch about headaches and hangnails (myself included), should learn a thing or two from our boy. He wakes up with a smile and goes to bed with a smile. THAT makes being around him (even changing his diapers) pretty darn wonderful. His smiles are contagious.

There is also a whole lot of DUCT TAPE that holds our family together. Some of it is made up of stuff. I know that such things should never be mentioned out loud, but sometimes stuff makes things a little easier – iPads, vacations, Buddybikes, super cute diaper bags. None of them make challenges disappear, but it can make those challenges easier to look at.

Stuff is fun, but the most important DUCT TAPE — the real glue that’s held us together — has been the people in our lives. From the teacher that helped us search for a diagnosis, to the doctors who dove in to saving Jack, to the nurses that held us together during the horror of transplant, to the family who is always here for us, to the teachers and therapists who have helped rebuild and teach us how to adapt, to the test earlier this month that determined that ALD is not going to mess with my grandchildren*, and to our friends who – what haven’t they done?

We are grateful for a lot this season. I got a little lost in brining, mashing and setting the table that I almost forgot to thank the universe for all our gifts. Now that the universe has been notified, I will continue cooking.

What are you grateful for?

Love, Jess
* I am aware that Anna is YEARS from having children. Years from even thinking about relationships or even holding hands.

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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