(another) man down

Generally, I’m a really good caregiver. I’m not patting myself on the back – I’m the first to admit that I’m not great at a whole lot of things, but if you ever need someone to hang with you while you’re waiting in doctor’s offices or recovering from surgery or binge watching mindless television with your feet up, I’m your gal. 

I don’t mind dressing changes, I’m good with organizing medication and I know my way around the kitchen. I’m also not scared of those awkward, messy situations that can come up. I’ve had piles of experience with such things.

 That said, I’m a little tired right now and likely not winning any awards for Caregiver of the Year.

Dan had shoulder surgery last week. Poor guy has tried everything from physical therapy to chiropractors to some guy who I’ve only heard called The Witch Doctor who filled Dan’s arm full of electrical stimulation. Nothing worked, so Dan finally gave in and scheduled surgery.

Nothing huge, but I was a little nervous about what to expect. It was Dan’s first surgery – ever (impressive for a person 51 years old) and I wasn’t sure how he’d be as a patient and how PATIENT I would be with a new patient to care for. Dan, always wanting to limit my stress, often down-plays things. Leading up to the surgery, he’d refer to the recovery as “a day or two”. Even as we drove to the appointment last Thursday, he was sharing that he would be starting PT within a few days was looking forward to a party we were invited to on Saturday night.

I suspected that Dan was being a little overly optimistic, and when I walked into the recovery room my suspicions were confirmed. My strong, handsome husband looked like he’d been in a fight. When I set him up on the couch when we got home I started to really appreciate that he wouldn’t be able to do much for a while.

You never really appreciate how much someone does, until they can’t.

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Caring for Jack requires a lot, but after 11+ years, days go by without much thought about the details. I’m the primary caregiver during the week, but nights and weekends Dan and I split the responsibilities. Without any planning, we take turns brushing and bathing and feeding our boy. Not that there is never confusion over whether or not Jack got his afternoon meds and you might hear us bribing each other to take a turn feeding Jack when we’re out at a restaurant – but mostly things run pretty smoothly.

I’m used to taking 100 percent of the responsibilities when Dan is traveling, but this has been the first time that Dan is here and not able to help. He’s down an arm and caring for Jack requires two. So does cooking, walking the dogs, doing the dishes and the laundry, and driving. He’s making a great recovery, but I don’t think Jack duty (or Jack doody) is in Dan’s future any time soon. Jack is strong and I’m not sure he can appreciate how careful he needs to be with his Dad. For now, I’m in charge of all meals, bedtimes, showers, medications, errands, and poop.

It’s no ones fault and it isn’t the end of the world, but last night as I was falling asleep, I wondered if there was any way that I could plan a little surgery for myself sometime soon.

Love, Jess

Dan skipped that party on Saturday night. I went with friends and did my best to be festive enough to represented us both. Boy did I miss having Dan take the morning shift yesterday;)

I say I am doing things solo, but I do have some help. Thank you Lilly and Maria for everything you do for us!!!!!!

no need for a recount

I try not to get political on this blog. One reason is that I know that there probably isn’t anything I could say that would ever change anyone’s mind AND I’m guessing that considering I’m a pot-brownie baking, Latin American born woman who has a son with disabilities/pre-existing conditions and a daughter who is set to break many glass ceilings – you know where I stand.

In the last two years, the word president has taken on a new definition. Often more of a punchline than a title of respect and honor. So, when I saw this poster hanging on the walls of CPNJ Horizon High School a few months ago I was rather surprised. Who would want THAT job?

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You know our boy is always up for a challenge. Jack ran his campaign with the motto of being the “voice of the high school”. I can assure you that it was not an empty promise. Jack may not speak, but he understands everything and has the pulse on what is important to his classmates. He listens, he understands, and he knows how to get things done. My guess is that had he won, there would have been a few extra dance parties added to the calendar this year.

That’s right. Jack did not win. He lost to a very worthy opponent and Jack conceded with grace. From what I understand he shook the new president’s hand and wished him well (with his iPAD).

When I got the news, I can’t say that my first reaction was as full of grace. It was more, “What the F*%&!?!? How did my boy NOT win!?!?!”Jack’s life fell apart 11 years ago, but we glued (or taped) it back together and now he should get EVERYTHING he wants!!!”

Once I caught my breath, I laughed. Who needs all that work anyway? Besides, I love that his school doesn’t have an “all kids win everything” policy. Just because the students have complicated lives, doesn’t mean that they can’t handle some disappointments. In fact, I’d argue that this is a crew can handle more than most people in Washington.

Still, I worried a little about how Jack was feeling, so I picked him up early and greeted him with a big hug. He didn’t seem an worse for wear. I told him how proud of him we all are and that he should be proud that he ran an honest campaign without any outside interference from Russia. Then, I reminded him that he still won the popular vote at our house. He popped me on the head, smiled and got in the car.

Jack’s up for his next challenge. Maybe Prom King?
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Love, Jess

Halloween 2016 – we thought it was funny. Elections don’t always go as expected.

 

Our Thanksgiving Chime

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The calm before the storm

We have an alarm that sounds every time the front door opens — a two-note chime. It’s usually followed by Finn (bad dog) barking loudly and racing to see who’s arrived and how long he can get away with jumping all over them. Last week, the constant chime exhausted poor Finn so that by Wednesday, all he could manage was to lift his head off the couch for a second to see who’d walked in the door before returning to his nap. 

At the beginning of the week, I too would race to see who’d arrived so that I could give them some love and offer them a snack or something to drink. After a couple of days, I figured everyone knew that I loved them and how to walk to the kitchen.

Anna was home for Thanksgiving (THANKS GOODNESS) and our dear friends – the Mackays – joined us for the holiday week. An extra five people and a dog, adding some noise to our “far too quiet since Anna left for college” house.

We invited another ten people and two dogs for Thanksgiving Day. Nineteen humans, five dogs, two turkeys (one fried), six pies, two stuffings, bourbon sweet potatoes, mashed potatoes, green beans, salad, cranberry sauce, and more wine then our poor recycling cans could manage. Crazy, delicious, fun AND constant door chimes.

We said goodbye after Thanksgiving dinner to ten guests and two dogs, but added two more people on Friday (my best friend from college, Enger, and Katie Mackays roommate, Hanna). I feared we’d not have the energy to entertain them, but we managed. We even threw in a little party on Saturday night to round off the week!

The front door kept on chiming.

Yesterday we woke up and everyone did their part cleaning up the house, stripping beds and starting the laundry. Then, one by one everyone headed out – back to college, work, reality. I usually love the quiet after the storm of a holiday, but everything was so perfect last week, that I really didn’t want it to end.

I’ve been stressing lately about some things, but when it comes down to it, our lives are wonderful. Our friends, our family – they’re really all that matters. I can’t wait for the holidays to continue. We need some time with the Torrey side – and our door needs to go back to chiming!!

Love, Jess

PS Anna comes home in 17 days and the Mackays promised to come for New Years!!!!

 

what is normal?

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The other day I was talking with a friend who was bitching about her teenager not doing their chores. She was going on and on about how hard parenting is, when she suddenly stopped mid-sentence and looked at me, “Sorry Jess. I shouldn’t complain to you about all this normal parenting stuff.”

At first I didn’t understand why I shouldn’t be the appropriate audience for her complaints. We’ve been friends for years and I like to think of myself as a pretty good listener. Then I realized what she meant. She shouldn’t complain to me, because parenting for me isn’t normal.

False.

I’m actually a very normal parent. Not just because I have one typical child, but because for me parenting is just about loving your child and doing whatever they need to keep them comfortable, safe and happy (with limits on the happy part if it includes super late curfews, sports cars or jellybeans for dinner).

Maybe my parenting doesn’t look like everybody else’s, but what the hell is normal anyway?

nor·mal
/ˈnôrməl/
adjective
adjective: normal
1 1. 
conforming to a standard; usual, typical, or expected.”it’s quite normal for puppies to bolt their food”

For me it’s completely standard; usual, typical AND expected to:

— Separate laundry, not by light and dark, but by urine-soaked or not (and I sometimes sneak some urine-soaked clothing in with the non urine-soaked stuff).
— Buy diapers in bulk – both XL Goodnights and XS Depends (one of each and we can sometimes prevent leakage).
— Help my son walk up/down the stairs.
— Bathe my 20-year-old son.
— Help my son get into the car and buckle his seatbelt (and check every few minutes to see if he has unhooked it).
— Check on my son at least two times during the night.
— Hydrate my son through a tube in his stomach.
— Change that tube ever couple of months.
— Change my son’s diaper in a parking lot to avoid changing him in a dirty public restroom with people asking, “Why are you bringing him in the bathroom with you?”
— Medicate my son three times a day.
— Check my son’s mouth periodically to retrieve coins, jewelry, etc.
— Brush my son’s teeth twice a day and lie to his dentist twice a year when I tell him that I also floss Jack’s teeth.
— Infuse butter with marijuana and bake cookies to help my son walk, sleep, and eat.
— Feed my son and, when he holds food in his mouth for too long without swallowing, bringing him to the sink and scoop it out of his mouth.
— Bring pee pads any time we go to a friend’s house so that we don’t ruin furniture.    — Only have friends that can handle having their furniture peed on.
— Sing and dance to 70s music in the bathroom to entertain my son while he sits on the toilet for 30 minute stretches.

Some of you might find this list extreme or sad, while others may have similar lists of normal. Either way, know that even though parenting can be a little more hands-on or complicated or messy, anything can seem normal after a while AND Jack makes all these duties quite manageable (and often rather funny). If you don’t believe me, come spend the day with us. I can promise you that you will see a very normal home. And, I can’t speak for every special mom, but one thing that makes me feel less than special, is when people act like my family isn’t normal.

So, I encourage everyone to bitch all they want to me about their kids not making their beds or not mowing the lawn or sneaking a beer from the basement fridge or procrastinating on they college essays.

Treating me normal makes me feel special.

Love, Jess

lunch – the recap

In case you missed Wednesday’s post – CLICK HERE.

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seven hours of driving + a quick tour of campus + lunch with our girl = best day EVER!

It was just what we all needed. Seeing Anna in her element helped me let go of my nerves about how she’s doing. She’s thriving. Her classwork is interesting, she loves exploring Baltimore and has made many wonderful new friends (we got to meet several). Two hours of showing us around her new turf and a fun lunch and we were on our way. Saying goodbye was not easy, but we will see Anna for Parent’s Weekend in a couple of weeks and again in early November for Cousin Carlos’ Baptism. Thank goodness – we need more Anna time!

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Saying goodbye wasn’t easy.

Thank you for all the love and support this week. I heard from many moms that they’re feeling the same way and I’m not alone in the crazy drive/hug/lunch/hug/drive. I also heard from a few kids who shared that they appreciate crazy drive/hug/lunch/hug/drives! I sure hope Anna did, because I have a feeling this won’t be the only time I pull this stunt;)

Thank you Anna for being you and, thank you Jack and Mymom for being my partners in crime!!!!!!

Love, Jess

 

lunch

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Several years ago, I was getting my nails done when I ran into a friend whose son had just left for college in Boston. We were chatting all about the excitement of drop-off and what it felt like getting home one kid down. She admitted that the transition had left her feeling a little lost and that she was planning to head up the next day to take her son out to lunch, “What? For lunch? In Boston?”

Maplewood to Boston is a 4 1/2 hour drive. I walked away from the conversation relieved that I would never be THAT crazy.

Jack, Mymom and I are driving to Baltimore to see Anna tomorrow. For lunch.

We’ve been busy trying to get into the rhythm of our new nest. I’m feeling a little less lost than I had expected, but it’s not easy. As long as I stay busy I’m okay, but when the chaos of life quiets, I get teary. The result is that our house has never been as clean and I seem to be very on top of my my TO DO list and piles of paperwork. I am looking for anything that can distract me from the quiet. Things like writing and walking are a little harder to do – too much time to think about how much I miss our girl. It’s better for me to stay in motion.

FaceTime is a luxury that I hadn’t expected. I’m trying not to over-do it, but at least once a day we sit down for our call.

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Thirty years ago, there were two pay phones at the end of my dorm hallway. My parents would call on Sunday mornings at 10:00 am. It wasn’t just their chance to catch up, but it was assurance that I was awake at 10:00 am on a Sunday (As soon as I got off the phone, I would crawl back into bed). Within a few months, I got a phone in my dorm room. Still, the phone calls from home were limited. It’s not that my folks weren’t eager to speak with me, but times were different. 

There is a lot of talk among my circle of friends — maybe we shouldn’t call too much. We need to let our kids fly. They need their independence. We need our independence.

Perhaps this generation is too in touch, but I don’t care. I love chatting with Anna as she’s walking across campus in the sticky Baltimore heat. I love that I am starting to learn the names of her new pals and a little about her classes. AND, I love that Jack is able to not just hear his sister, but see her. This transition has been hard for all of us, but for Jack it’s been particularly difficult. 

Although we’d been preparing for months for this new reality, Jack seems to be constantly waiting for his favorite person to walk into the room. When her picture appears on the iPhone  screen, he lights up. They spend a few minutes making their silly faces as Banana tells her Booger how much she misses him. Parent’s Weekend is just a couple of weeks away, but we can’t wait.

So . . . we’re getting in the car tomorrow morning and driving 4 hours to take our Anna out for lunch. If anyone asks, I tell them that it’s because Mymom hasn’t seen Anna in a few months and the Jack really NEEDS a visit. That’s not completely true. It will be a lot of driving for a short visit, but I’ve never been as excited for a day trip in my life.

Love, Jess

To my friend from the nail salon – I owe you one. A lunch visit is a fine idea – NOTHING CRAZY ABOUT IT!!!!

my anchor

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How’d college drop-off go?

As soon as we left the house, I grabbed Anna’s hand and said, “It took us eighteen years to prepare for this drive.” I was bawling before we left Clinton Avenue.

It was a long two days of loading and unloading and setting up and last minute shopping and crying, before we kissed Anna good-bye and headed home to our new chapter. The house seems a little too quiet, but I’m not as sad as I’d expected. Sad would mean that I’m waking up in the middle of the night crying and sitting in Anna’s room counting the days until she comes home for Thanksgiving break (81 – maybe I am counting a little, but I’m staying clear of her room). I’m not sad, instead I’d describe it as feeling lost.

I’m getting along fine and then something will hit me. The empty stool at the kitchen island or the missing pile of shoes at the front door. I’m missing that fight in the morning when there’s no milk for my coffee because Anna and her friends had late-night bowls of cereal while watching Gilmore Girls. I miss Anna’s boyfriend, Will, racing into our house and wrestling a hug out of Jack. I miss the dirty dishes in the sink. I keep wondering when Anna will be home for dinner before remembering that she won’t be home for three months.

I also miss the chaos of being an everyday parent of a typical kid.

Anna has been our anchor to typical parenting. She’s linked us to her typical schools with their typical sports and typical classes. She’s had piles of typical friends that filled our house with typical snacks and typical teenage drama. She allowed us to get distracted from IEPs and changing G-tubes, because we needed to worry about curfews and grades and other typical stuff.

Being Jack’s mother is my honor and I love (almost) every ounce of parenting him, but it’s different. It’s not the parenting that you read about in novels or watch in movies. It’s not the parenting that MOST of my friends have experienced. It’s not the same parenting that raised me or raised Dan. I pride myself in not needing to be like everyone else, but it has been nice to be part of the conversation when people are talking about t-ball, middle school drama, first boyfriends, driving tests, and college essays.

I’m scared that without my anchor I will be left adrift.

The biggest accomplishments of my life have been as a mother. I am not pretending that I’ve been a perfect parent. There’s a long list of mistakes I’ve made along the way (things I wish I had taken more seriously – things that I did that make me cringe) but, when I look at our two children, I’m so proud of what I helped to create. I’ve grown to embrace being part of Jack’s beautiful, complicated life, and I’ve also loved being anchored to the day-to-day typical parenting world thanks to Anna.

I know that parenting isn’t over when kids head off to school or go to work or start their own families. I just hurt my toe (long story that means I will never go into Trader Joe’s again without wearing boots), and the first person I called was my mother. The last few days Anna has reached out to share stories about her first days on campus. I know I will be part of Anna’s life forever, but my anchor is now 156 miles away. She will no longer share every detail of her experiences. She will make friends that I will never meet and do things that I haven’t signed off on or understand. She is starting her new life. I’ll always be part of it, but a smaller part than I was a week ago.

I’m trying to get my bearings and am really trying not to overdo the calling/texting/face-timing. I want to give Anna space to fly, but it’s hard not to hear her voice around the house, “Mooommmmmm, where’s my backpack/curling iron/charger?” “Mooommmmmmm, what’s for dinner?!?” “Mooommmm, can I take the car?!?”

Jack is doing a great job of keeping me distracted. As I’m writing this (on the couch, with my foot elevated and covered with a pile of ice), Jack is sitting next to me laughing at his Impractical Jokers. Jack might not be “typical”, but he sure is great company!
Love, Jess

PS Anna isn’t just a pleasure to parent, she’s the best friend I could ever ask for. Maybe I am a little sad. Just a little. Enjoy every second Blue Jay Banana, but don’t forget to FaceTime!!!

happy birthday JackO!!

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What were you doing in your life when you turned 20?

I was living in Baltimore – a junior at Goucher College, studying art. I was trying to balance keeping up with my studies while enjoying every ounce of social time that I could. Dan was a student at Johns Hopkins and studying in Florence for the year. He was learning a new language and traveling throughout Europe with a very thin wallet and a EuroRail Pass.

When we started our family and I would dare to think about the future, like most parents, I imagined our children following a similar path to what Dan and I took. I didn’t think of if Jack and Anna would go to college, but where they would go. Whether they would study art or a language or the law. I hoped they would make good choices and stay out of too much trouble.

Having a special child, you need to learn how to shift your expectations and letting go of the college dream for Jack is something I did long ago, but with each birthday I’d be lying if I said I didn’t pause for a moment and think if only . . .

Instead of college, Jack greeted his 20th birthday still attending his high school and living at home. He requires assistance with everything from eating to showering to getting dressed to toileting to getting into bed. It’s not the life I ever imagined for our son, but as I celebrated his 20th birthday with him, all I kept thinking was how happy he is.

Jack partied all weekend long! Pool time with his buddies Peter and Orla, a party on our deck with close friends, and he even got to spend time with his oldest friend, Caleb. Today the party continued as he celebrated with his buddies at school. As I watched him enjoy all the attention, I realized there’s no need for if only just WOW! What a great life our boy is living!

Life at 20 can vary. It’s that age that straddles the end of childhood and beginning of adulthood. One thing that most people have in common at that age is that everything seems possible. Jack’s life is different than most, but I still believe that anything is possible. HAPPY BIRTHDAY JACKO!!

Love, Jess

a table full of girls

Over the weekend we attended another graduation party celebrating a dear friend of Anna. They’ve known each other since they were tiny, and she has spent so much time with our family, that I consider her to be another daughter. Dan loves her too and Jack would think of her as a sister, if he didn’t have such a massive crush on her.

She’s not alone. Jack has crushes on all of Anna’s girlfriends. And these girls are wonderful to our boy. When they come to our house, the first thing they do when they walk in our door is ask, “Where’s Jack?” and then seek him out to give him a smooch. Some days I find Jack in the middle of the sofa surrounded by beautiful teenage girls watching Gilmore Girls or lose track of him to discover that he’s made his way up to Anna’s room to listen to some girlie gossip.

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Jack and some of the gals a few years ago.

Most of Anna’s circle of friends she’s known since diaper days. They knew Anna when she was a chubby little girl with a crooked smile. They knew our first house over on Jefferson Avenue and they knew Dan and I before we had gray hair. These kids also knew our family before ALD came screeching into our lives. They knew Jack when he was just a year ahead of them in school, loved to ride his bike and was one of the MCs in the school talent show (the only video we have where we can hear him speaking . . . ).

I realized while watching the girls at the party that I’m not just saying goodbye to Anna as she heads out to college — I’m saying goodbye to her buddies too. And, so is Jack.

I know Anna will find a wonderful new cluster of friends at college. She has good taste in friends and seems to always be surrounded by a funny, smart, kind assortment of people. I’m sure she will share a lot about her family with these new friends. About her loud Dad who graduated from Hopkins and loves history, music, lacrosse and the Yankees. She will undoubtedly share stories of her mother who insists on family dinners, needs constant help with wardrobe advice and spelling, and drinks a little more white wine than she should. And, I’m sure Anna’s new friends will hear a ton about her brother – the person who she adores more than anyone on the planet. They will hear what happened when Anna was only six-years-old and how it shaped so much of who she is now and what she longs to do with her life. Her new friends will see pictures of all of us and maybe even meet us over the next few years, but they will never know the whole story. They will never really know Jack the way that Anna’s childhood friends do.

I know that some of the relationships Anna has with her childhood crew will ebb and flow for a while. They are scattering all over the US for the next four years. It will be hard, but I really hope that they all make an effort to meet up again whenever they can. I’m lucky to still be close with a few of my childhood friends and it’s amazing how they know me on a level that newer friends just can’t reach. There’s something magical about childhood friends.

The graduation party was wonderful — good food, some white wine for me, and a lot of familiar faces. As I sat inside to escape the heat, I watched Jack through a large picture window. He was sitting next to Anna at a table full of some of his favorite girls. He had a grin from ear to ear. I know there will be more parties and tables full of these girls, but they will be a further apart now that many of the kids are heading off. I want to make sure that I savor them while I can and make sure JackO gets to enjoy as much girl time as possible before the summer comes to a close.

Love, Jess

welcome to the world beautiful boy!

I was seven when my younger brother Phil was born. It was before the days that hospitals allowed siblings to visit the maternity ward, so the first time I met my brother was when my mother walked into the house, holding him wrapped up like the most magical present I’d ever seen. My very own living doll.

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I loved having a little brother who I could dress up and cuddle, but as we got older the seven years between us meant that we were always at different stages. When I was in high school, Phil was the nosy kid who always seemed to ruin the fun. And when he was busy enjoying his own high school angst, I was the older sister acting like a lame extra parent. Phil was still in college when I got married and barely out when Dan and I started a family. He was living the single life, as a creative sole, when I was busy raising kids and then dealing with our ALD journey/nightmare. I think Phil and I both spent much of the last twenty years loving each other, but not really getting each other.

Last week, that baby that I held 41 years ago welcomed his own baby into the world, Carlos Michael Cappello. Not only am I thrilled to have another baby in the family, but when I watched my brother hold his son, I realized that for the first time in a long time, our paths are overlapping.

Phil’s beautiful wife, Kate, bravely suffered through 27 hours of labor before needing a c-section. A cruel introduction to parenthood. Learning from the get-go that no matter how much you plan, kids have a way of directing things. And, despite their exhaustion, both my brother and sister-in-law quickly discovered that, no matter what complications your kid puts you through, you push on with a smile, because you would do anything for your child.

Little Carlito is the most beautiful baby. He is strong and healthy and I swear he was smiling yesterday while his parents were holding him. He knows he’s in great hands. Phil and Kate are already amazing parents.

Welcome to the world beautiful boy! And, welcome to parenthood my brother. May you enjoy every beautiful, messy moment. And, if you ever need anything I am here for you. I get you;)

Love, Aunt Jess

 

 

If your wondering if spending time with my new nephew made me start thinking about Jack and ALD and if onlys. Sure. As I held Carlito with Jack by my side, I couldn’t help but think of all the hopes and dreams we had for our boy when we first brought him into the world. How, almost twenty years later, many of those dreams are out of reach. But, then I quickly brought myself back to where we are and who Jack is and how we can’t focus on the if onlys. If onlys don’t really get you too far. All they really do is make you blind to what’s in front of you. And, what’s in front of us is a new, beautiful boy who we can hold and dress up and cuddle and then hand back to his parents when he needs a diaper change.

Besides, our biggest goal for our boy was for him to be happy and who’s happier than Jack?

Anna is missing from the photos because she’s at BEACH WEEK with her buddies. allowing her to go was not by proudest moment as a parent, but so far she is safe and sound and hasn’t gotten into too much trouble. She can’t wait to meet Carlito!