It’s a GIRL!

Posted on June 28, 2017 by smilesandducttape

Anna left at the crack of dawn for the DMV, and returned with a huge smile on her face and a driver’s license in her wallet. Once I was done jumping up and down with her in the driveway, I found myself in a puddle of tears. And, the tears aren’t stopping.

I’m hoping that some time here on the computer will help me sort out why I’m finding today so overwhelming. If I can just find the words, I might be able to make some sense out of all these emotions.

I’m excited for Anna. 17 is huge and getting your license is a great achievement. I know that some kids these days aren’t too interested in driving, but our girl has been obsessed with cars since we let her drive up the driveway on Block Island when she was twelve years old. She organized a driving instructor and even talked us into giving her Dan’s car over a year ago (he took the train today – anyone selling a car?). When our girl gets her mind set on something, she’s all in. And, Dan and I have also been looking forward to this milestone. Not needing to worry about getting Anna to and from school and lacrosse practice – AND having her help with errands is going to be wonderful.

So, what’s with all these tears? Here’s what I’ve up with:

1.) There is always the “Jack Factor”. That punch in the gut when there’s a bold reminder of something that Jack will never experience. That was further highlighted today when I realized that the rest of my day included stocking up on his diapers at Target, dealing with Medicaid, and setting up some doctor’s appointments. That punch never goes away.

2.) The phone call to our insurance company adding Anna to our plan. Even with the “good student discount”, the increase to our policy was startling. Probably not enough to make me cry, but it certainly made me pause.

3.) As much as I love having a daughter/sister/bestie I can’t believe I no longer have a little girl. Wasn’t she just born?

I won’t go into all the details of the day Anna arrived, but I will share that it wasn’t quite as beautiful as I had imagined the birth would be. I had begged my doctor to allow me to have a VBAC (vaginal birth after c-section). Jack had been breech and 10 pounds – a scheduled c-section. I’d felt cheated from having a typical “birth story”, and thought that this was a great idea. Unfortunately, it wasn’t as fun as I expected. I had signed up for a VBAC, not for a natural delivery, but by the time Anna arrived, any bit of pain medication was gone. GONE.

Needless to say, I was in agony. The only thing that kept me from continuing my four-letter-word rant, was when I heard the doctor say, “It’s a girl!”

I stopped screaming to ask, “Are you sure?”

Dan and I didn’t know the gender of either Jack or Anna before they arrived. We loved the idea of the “ultimate surprise”, but truthfully I wasn’t ever expecting to have a daughter. Dan’s sister, April, is the only girl of her generation on the Torrey side. And, Pop Pop (Dan’s father) is one of four boys. When Dan and I started our family, I really pictured myself as a mom of a couple of boys. “It’s a girl” was a complete surprise. We had no name prepared and nothing pink waiting for her arrival. I just stared at this little peanut as she was placed on my chest, wondering what it was going to be like to have a daughter.

It’s been amazing, but how did the time go so quickly? How is that little girl with no name or pink blankets driving a car to pick up her boyfriend and go out to lunch?

Okay – I got it. I’m hysterical because my job as Anna’s mom is reaching the end. Thank goodness MyMom is on her way for a visit. I need some love. Hey, wait a minute . . .

Love, Jess

Happy Birthday Banana! You can come home now. I’m done crying for now;)

My Sister (daughter/bestie)

Posted on June 22, 2017 by smilesandducttape

I didn’t have a sister, so I made one. It took a bit of help from Dan and loads of support from our friends and extended family, and I think we’ve done a pretty amazing job with the project. She’s just one inch shorter than I am, has the same blonde hair (although hers is a little more natural than mine), and we defiantly share the same sense of humor. She is a great sister to have. She is smart beyond her years and is the kindest person you will ever meet. She is a much younger, smarter, kinder version of me. Anna is my mini-me daughter/sister/bestie.

Thanks to my daughter/sister/bestie being thirty years younger than I am, I get to have a window into the life of a teenager in 2017. Trust me – it’s amazing!

This June has been particularly packed with fun and signs that our little girl is not so little anymore. I know I am not alone in being caught off guard by how painfully long parenting goes on AND just how quickly it’s over. How can our girl who was just in pre-school be on her way to starting her last year of high school and filling her life with so many adult things?

Last weekend Anna stayed home alone for a night. She had to stay local while the rest of us went to visit family. We were going to have her stay with friends, but after a lot of back and forth, we caved. She has never done anything to lose our trust and she did not disappointment us last weekend. There were no parties. If you are thinking, “How would Jesse know?” . . . I set up a camera in the center hall — really — I might trust her but I am not a fool AND I’m also a little nuts.

Then, this week Anna went to her second Prom for the season. Our beautiful girl looked stunning in her red dress and wore higher heels than her mama can manage. She shared plenty of fun stories of teenage silliness with her (much) older sister (that’s me). She also came home at 4:03 am (I still have the camera in the center hall). I sure wish I could have half the energy of my daughter/sister/bestie!

The last hurrah for Anna’s Magical June will be her birthday. Anna turns 17 on the 28th. In NJ, 17 means she gets her driver’s license. That chunky little peanut who used to snuggle safely in a car seat just a minute ago is going to be driving a car. It’s a little hard to imagine, but at least now I have a daughter/sister/bestie who can help me with errands and is also a designated driver!

All these significant events are to be celebrated, and I feel so lucky that Anna and I have a relationship that is so close, but as each of these events happens there’s a little stab to my heart. Prom, staying alone, senior year, driving – these are all milestones that Jack will never reach.

It’s hard, but so far I’m holding it together. Thank goodness I’ve mastered the ability to compartmentalize. It’s the only way I can survive. When I look at my daughter/sister/bestie, I try to clear my head of what ALD stole from Jack, and focus on how amazed and thrilled I am for her. So much of Anna’s life has been about Jack. It’s her turn to be the center of attention.

Besides venting a tiny bit here, I am going to do my best to continue to ignore that little stab to my heart. It might not be the healthiest decision, but I really want to avoid missing these celebrations by wasting time with the “If onlys”. Life is way too short and my sister/daughter/bestie needs me!

Love, Jess

Happy Father’s Day DanO!

Posted on June 18, 2017 by smilesandducttape

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I would like to record what happens in Jack’s bathroom on Sunday mornings. It’s a routine that takes at least 40 minutes and involves laughing, singing and plenty of four-letter-words. Dan does it so that I can have a break from the morning routine, but I usually can’t sleep through the commotion. Instead, I lay in bed and count my blessings.

Dan has always been a hands-on father with both the kids. He once spent an entire night waiting in line to insure Jack got into our favorite pre-school, and coached Anna’s lacrosse team for so long that I sometimes need to apologize to her varsity coaches now for Dan’s sideline behavior. Even with all his business travel, Dan tries to make every home lacrosse game to cheer on Number 22 (Bananz/Anna) and schedules business around IEP meetings and important school events for JackO.

I sometimes wonder what our family would have looked like without ALD taking center stage. Would we have hung together so tightly or would we have gotten distracted by trivial nonsense and focused less on family? I can’t say for sure, but I can say that, no matter the reason, I do appreciate how close our little foursome is.

I get a lot of credit for holding up our house of cards, but the truth is that while I do my share, it’s Dan that really holds it all together. He knows what each of us needs. Heated discussions with Anna about political topics, snuggling on the couch with Jack watching his favorite Impractical Jokers. And, he is the calm voice of reason, balancing out my crazy. When I get stuck under my pile of Social Security/Medicaid/medical bills bullshit, he reminds me of what is important. AND that we are a family that survives, “Just take things day by day.”

This morning we woke up in Connecticut where we were visiting family. Despite a long night of festivities and it being Father’s Day, Dan still managed to continue his Sunday morning ritual – bathing, changing, toiling his eighteen year old son. It takes parenting to a whole new level. There is a fair amount of cursing that goes on in the bathroom on Sunday mornings, but there is also a song for everything. Not sure how you manage to keep coming up with new ones, but keep singing DanO!

Happy Father’s Day!

Love, Jess

I’d also like to mention two other remarkable fathers – Nonno and PopPop. We love you both!!!

Our (kinda) Skilled Companion

Posted on June 15, 2017 by smilesandducttape

Keegan is a Service Dog. To be exact, he’s a “Skilled Companion” which means that he has been trained to work with people with disabilities (JackO) under the guidance of a facilitator – that’s me. He was trained for two years by Canine Companions for Independence (CCI) and is qualified to be in public – wherever a human is allowed.

Today Jack, Keegan and I are going out to Long Island for our Public Access Certification Test. We will be meeting up with a CCI team and several other CCI graduates at a mall where they have us work for an hour to see whether on not we are still qualified (under CCI standards) for public access. I’m a little nervous.

I hope the folks at CCI don’t see this, but I am pretty sure we’ve ruined Keegan. Sure, compared to Finn (our other pup), Keegan is a star, but when I think back to the dog we brought home 7 years ago, I cringe. Keegan knew over 40 commands and did not need any guidance to behave perfectly when in public. Now he’s a very sweet, kinda smartISH pet.

I keep warning our CCI trainers that we may have gotten a little lax over the years, and that perhaps Keegan’s skills might be a little rusty. The team has been sweet, assuring me that they understand that Keegan’s primary role is to be Jack’s buddy. “As long as your team can be handled safely and appropriately in public you should be fine”.

Fingers crossed.

So why am I brining him? Because I am a rule follower AND because I feel that if I DESERVE to be scolded, I should be. A great deal of time, effort and money went into Keegan’s training. If we are falling short on our end of the bargain, I need to do what I can to rectify it. After all, I am the first person to judge people that take advantage of the rather loose definition of a service animal.

I am an animal lover and I know a pet can be a member of the family. I also know that many pets can be well behaved and probably wouldn’t cause much of an issue in public, but the training it takes to insure an animal is silent, respectful and helpful in caring for specific disabilities is huge.

If you buy a vest on-line for your pet so that he/she can accompany you on vacation, you are actually hurting people who can’t be independent without their animal. If your dog/cat/miniature horse/ferret does not behave appropriately in public, people start to complain that all service animals are just “pets with vests”. We don’t want laws to change regarding public access for service animals because so many people gain a huge amount of support and independence because of their four legged friend. I know for Jack, Keegan is primarily a best friend/furry pillow, but some people rely of their service animal for far more than licks and cuddles.

So we are up bright an early to drive out to Long Island. Keegan has been bathed, his nails have been cut and his vest has been cleaned. I’ve been working on “Wait” and “Under” and “Car” for weeks, and we are as ready as we are going to be. I will let you know as soon as soon as we get the thumbs up or thumbs down.

Love, Jess

PS If we do not pass, CCI isn’t going to put me in handcuffs and take Keegan away. They will work with us to regain what we have lost.

For more information about CCI go to http://www.CCI.org

UPDATE: We passed with flying colors!!!!!!!

#THISiswhatALDlookslike

Posted on June 4, 2017 by smilesandducttape

I do some of my best thinking at night. Thanks to a small (kinda broken) bladder, I wake up often and before I fall back asleep, I often have these brief moments of genius. Sometimes I wake up and laugh at the absurdity of my late night ideas, but sometimes I think I’ve actually stumbled onto something good.

I’ve been fighting a wicked cold and have found my late-night-mind-spinning-time has increased exponentially. Lying in bed, cursing my cough and trying to find my way back to sleep, I’ve been thinking a lot about our boy, ten years and ALD.

I’ve shared our story from the beginning of our journey with ALD for a lot of reasons. Initially, it was to keep people posted on Jack’s progress, then it was for me to process the madness in our lives. BUT I’ve come to realize that one of the biggest reasons that I continue sharing is that I want people to see what our lives look like.

Adrenoleukodystrophy is not a disease you can picture by Googling the word. What you find when you Google Adrenoleukodysrophy is words like “demyelinating” and “metabolic,” and “long-chain-fatty acids”. If you dig a little deeper, you find statistics about boys who develop Childhood Cerebral ALD and men who develop Adrenomyloneuropathy (AMN), the percentage of Addison’s Disease reported, even the effects a carrier can develop. But ALD is not just about these facts — it’s about the people that it touches. They each have a story. Some good, some horrific, some somewhere in-between.

In order to really understand the disease you need to meet the people.

I went to a seminar a few weeks ago (run by Maplewood Cultural Affairs) and the cool, young, hip speakers spent a lot of time discussing the importance of social media in promoting your work/causes/etc. Apparently my time on the Facebook (even calling it THE Facebook) was getting a little dated. The seminar gave me an education on Instagram, Twitter and hashtags.

I came home and tried to figure everything out and thanks to my personal IT person – Anna – I got some extra schooling on Twitter and Instagram and finally understand what a hashtag is (FYI #hashtag is not a cool thing to tweet).

I started not just adding #smilesandducttape to archive my writing/photos, but I added #THISiswhatALDlooks like.

A few nights ago while coughing uncontrollably I thought – wouldn’t it be cool if all the other ALD families did the same and we could have a giant archive of who we are? Not just the boys post-transplant with complicated lives, but the boys who have hope thanks to New Born Screening, and the boys on Lorenzo’s Oil, even the boys who have lost their battle but are still alive in the hearts of their friends and family. AND, I picture it being not just our boys, but their siblings, their families, their community.

I’ve come to know many families with our disease and each has a story. I would love it if we could band together and introduce ourselves to all of you. I think if the public can SEE our disease they will understand it more.
Let’s see if we can get this to work – could all the ALD families out there use #THISiswhatALDlookslike to show the public the PEOPLE behind the disease?

Love, Jess

OK – awake Jesse has done some digging now that I understand this whole hashtag thing. #savetheboys #adrenoleukodystrophy #fuckALD and #aidanhasaposse are 100 steps ahead of me. Not just archiving family photos, but starting a movement to save our boys. Not sure if I am helping or adding to the confusion here. You tell me.

#THISiswhatALDlookslike