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!!!!

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!

mixed emotions, a banquet, and a birthday – GO COUGARS!

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I’ve had mixed emotions anticipating this spring. So many things to celebrate, but each celebration highlights that we’re closing a chapter. There have been a lot of “lasts” lately and tonight is another one — the last Columbia Girls Lacrosse Banquet.

I’m going to be honest. If you’ve had kids who’ve played sports, you might not agree (maybe I’m a terrible mom), but I spent many years dreading the lacrosse season. It’s not that I don’t enjoy watching the sport, it’s that the season seems to have us spectators either wrapped in blankets, freezing OR trying desperately to find a sliver of shade to protect us from the hot sun. I also would look at the lacrosse schedule at the beginning of each season and wonder why on earth we couldn’t just play neighboring towns – instead each year we needed to shlep all around northern NJ to sit in the freezing cold or scorching heat.

Then, there’s the driving. I must have inherited it from Mymom. She HATED being carpool mom. My mother once said to the headmistress of my elementary school, “What do you mean you removed the bike rack because of all the snow this year? It’s going to take Jesse an hour to get to school without her bike.” I haven’t avoided getting behind the wheel as much as she did, but those after-practice pick-ups that hit right in the middle of dinnertime made me crazy.

For years I would use the “Jack excuse”. My friends helped out with the practice pick-ups and Jack would be used to make an early exit or avoid games altogether. “It’s too cold for him.” “It’s way too hot for my boy.” “Poor Jack can’t get much sun with all his medication.”

Luckily Dan was the opposite. He didn’t seem to be bothered by the heat or the cold or the miles. Not only did he coach Anna’s team for years, but he would rearrange business trips so that he wouldn’t miss games. And, when he was there, everyone knew. “Loud Dan” isn’t his nickname for nothing!

As this lacrosse season approached, I changed my tune and became full-blow LAX MOM. I didn’t want to miss a minute of the season – the last season. I kept blankets and extra jackets in the car and, as the heat arrived, I had an umbrella to protect Jacko’s skin from the sun. I picked up Jack early from school so that we wouldn’t miss the first face-off of games and used WAZE to get us around towns I’d never heard of. The cold, the heat – nothing really bothered me as long as I could watch 22 on the field.

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I’m so proud of Banana. I love watching her bound down the field with the same determination she has for all things. I love saying “She gets all her skills from her mama.” And, I love that everyone laughs because they know that it couldn’t be farther from the truth. Dan and I made her, but Anna is her own girl . . . young woman AND she is amazing.

Columbia Girls Lacrosse has had a great season and I’m so glad I didn’t miss it. They might not have the best record in NJ, but they have heart and they kicked plenty of a$$ this year – go COUGARS!!!

Today is also Jack’s 11th transplant birthday. Happy Birthday JackO!! We are thrilled for him, but letting this day be about his sister – his favorite athlete and human;)

Love, LAX MOM (last day)

PS Mymom didn’t love driving us around, but she always had homemade bread with fresh butter and cinnamon-sugar waiting for us when we got home from our walks/bikerides.

 

 

If it weren’t for ALD . . .

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I ask myself a lot of questions that start with, “If it weren’t for ALD . . .”

If it weren’t for ALD . . . would I still be a photographer?

If it weren’t for ALD . . . would I have ever written anything besides shopping lists?

If it weren’t for ALD . . . what would Dan and my relationship look like?

If it weren’t for ALD . . . would we travel more?

If it weren’t for ALD . . . would Jack love music so much?

If it weren’t for ALD . . . would Anna be thinking about studying art over medicine?

If it weren’t for ALD . . . would Jack’s laughter be as loud?

If it weren’t for ALD . . . what would this year feel like?

I knew that this was coming, and did my best to brace for it, but I am still having a hard time. I open up Facebook and I’m faced with dozens of pictures of dorm rooms and college gear. Smiling family portraits of the last hug before mom and dad get in their car to leave their kids that are starting their next chapter.

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I thought I was okay, but the other day while getting Jack’s haircut, we were approached by one of his old friends. Jack was delighted and didn’t miss a beat – he went right in for a hug and a lick. Jack was fine, but seeing her beautiful smile and hearing about her plans had me crying before I knew what was happening.

So many tears.

I’ve been asking myself — If it weren’t for ALD . . . would I be crying this much as I said goodbye to these kids?

I’m a girl that cries at commercials and the cheesiest of Hallmark cards, so I’m guessing this milestone would have arrived with plenty of tears if Jack were among his college bound peers, but I know that it’s made more intense because ALD did happened – because Jack won’t ever reach this milestone, because it’s another thing he’s missing, because he’s being left behind.

If it weren’t for ALD . . . where would Jack be headed? Would we be driving or flying? Would he be off to study history or art or a language? Would we be excited to empty our nest a bit or dreading the goodbye? How can I NOT wonder “If it weren’t for ALD . . . ?” And, how can I NOT be sad?

So, my tears are flowing these days, as I expected they would be, but I’m realizing that there is another, unexpected layer to my sorrow.

I’m suddenly aware that a big life chapter is coming to a close — not just for the kids heading off, but for everyone they’re leaving behind. So much of my life for the last 19 years has been, not just as a mother to my own children, but watching all these other little humans go from babies to toddlers to school-age children to young women and men. I can’t believe that these kids are starting to move on, leaving everyone in their wake to figure out what they’re supposed to do with our new “freedom”. My nest will always remain full, but the focus of my circle of friends is changing. Friends are talking about selling their houses and starting new projects and careers.

How did we get here? What does that mean for our family? Just when I reached a place where I felt comfortable with my roll in the world, it’s changing. If it weren’t for ALD . . . would I be so uncomfortable with this change?

Crap.

Love, Jess

Today brings the hardest blow yet. Katie V and Katie M each head out for college (RJ is just a week away). These are not just family friends, they are family. Kids that have been been with us — held us up — before, during and after. We are going to miss you guys. Good luck, have fun, and feel free to call Aunt Jess with anything that your mom and dad might not want to hear;)

 

HaPpY 19th!

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I’m happy to report that we did not take any bit of HaPpY out of Happy Birthday (if you don’t know what I am talking about, click here)! JackO enjoyed every minute of his 19th Birthday and looks forward to celebrating all month long. Thank you for all your birthday notes – keep them coming!!

 

 

Love, Jess

PS HaPpY Birthday PopPop!!! We will celebrate soon Block Island style;)

 

I refuse to steal the HAPPY out of HAPPY BIRTHDAY

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I don’t remember all of my birthdays, but 19 was especially memorable. My friend, Dave, took me out for dinner. It was our favorite Chinese restaurant and I’m sure there was a Scorpion Bowl or Mai Tais or something else really sweet and really strong. We stuffed ourselves with beef and broccoli, and then Dave insisted on ordering dessert. Who does that at a Chinese restaurant? Fried ice cream or something odd and I could hardly fit in a bite. Besides, I was anxious to get back to the apartment. It was my birthday and I wanted to grab our friends and go out.

I felt like Dave was going in slow motion as we made our way back to the Woodrow (think rundown/gritty/college three-story apartment building in Baltimore). I was so focused on how lame he was being that I didn’t considered WHY he was moving so slowly until we walked through the door.

“Surprise!!!!”

I’ve never been so shocked. Somehow, without me having even a clue, my mother had contacted my best friend, Enger, and sent her some cash to plan something nice for my birthday (remember this was years before cell phones). I’m guessing that my mother had envisioned sparkling wine and canapés, but instead there were pizza boxes and a keg of beer. It was one of the funnest nights of my life. Rowdy, loud, and silly. 19.

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JackO is turning 19 on Saturday.

Each milestone that we reach comes with a little reminder of what coulda/shoulda been and I hate that. I hate that there is any hesitation on focusing on the happy part of happy birthday. I hate that I spend even a second wondering if I would have sent money to Jack’s college friends to buy some booze and party favors (probably not – 2017 is not 1988 – I’d probably end up in jail for contributing to the delinquency of minors). I hate that I wonder where Jack would have gone off to college. I hate that I use any ounce of energy cursing ALD — AGAIN.

But I do. I can’t help it.

When I started writing this, it was for me to post on Jack’s birthday, but I’m not going to wait until Saturday. It’s not fair to Jack. It’s not fair to his birthday. His birthday is for celebrating. He deserves it. He is the happiest person I know and NOONE likes a celebration more than our boy;)

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So — enough of the coulda/shoulda. We are going to celebrate all weekend. Heading to the beach with some of our closest friends. We’re going to eat pizza and cake and maybe even find ourselves a Mai Tai!!!!! Then, on Monday we will celebrate again with his pals at school. And, when we head to Block Island later in the month — we will have more cake and do more singing.

I will send some photos of all the fun on his actual birthday. In the meantime – send Jack a note. On Facebook or right here. Scroll down. See “Leave a reply”? Go for it!

Love, JackO’s mom

PS Once I have written down my feelings, I feel much better. No need for weepy phone calls or awkward hugs if you see me. I promise I’m now focusing on WackO JackO and his big, fun day/week/month.

PPS I wrote this last night and, as I was falling asleep, it occurred to me that I might have actually been remembering my 20th birthday. Enger? Dave? Betsey? Deb? Anyone?

 

 

Five Stages of a Day at Social Security

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I spent Wednesday at the Social Security office in Newark, NJ. It was an emotional day.

Denial

As I walked into the large waiting room, I was surprised that it was so crowded. How could every seat be filled on a Wednesday in the middle of the month? Deep breath. This is going to be fine. Today will be the last time I need to come to this office. I have everything they might need right here in my green Whole Foods bag filled with paper.

Ninety minutes later, I hear my number, I grab my green Whole Foods bag and race up to the counter. I give Jack’s social security number and the woman behind the counter starts typing frantically on her keyboard. Five minutes later she looks up, “I’m sorry Mrs. Torrey. It looks like you need to speak with Ms. @#$%. I can make you an appointment for next week.”

Anger

“Are you kidding me? I’ve been here for ninety minutes already and I called Ms. @#$% 17 times in the last two weeks. 17 TIMES! She has not returned one of those phone calls. THAT IS WHY I AM HERE! I can’t come back next week. I need to see someone NOW!”

I’m not sure if it was my strong words or my teary eyes that got to her, but suddenly the woman behind the counter told me to wait, went back to her keyboard, typed in some magic, and then directed me to another desk. I was introduced to the allusive Ms. @#$%.

Hopeful/Bargaining

I took a deep breath and put on the sweetest smile I could muster, “Thank you so much for seeing me Ms. @#$%. I’m sorry that I have been calling so much, it’s just that we are anxious to get this done. I promise I have ANYTHING you might need here in this bag.”

As I held up the green Whole Foods bag, she started shaking her head. “I just don’t think we can get this done quickly. I need a little more information from you and to have our lawyers look at your son’s case again. I will get back to you next week.”

Depression

Tears are now rolling down my face and I set down my green bag, “Next week? You can’t understand how complicated our lives are. My son turned eighteen last summer. We’ve been working on this for eight months. He should be worried about getting accepted into college this year – not whether he qualifies of SSI.”

The word “college” really got me going and I sat down with my head in my hands, “My son qualities for Social Security. He’s disabled. YOU know that he is! We’ve shown medical records and you have his school information. He will never work a day in his life. It’s not that he doesn’t want to – he can’t. HE can’t do anything on his own. We have given you all our his information. We have followed all the rules. We have filled out all of the paperwork you asked for. How on earth do you not have an answer?”

Ms. @#$% sat looking up at me and didn’t seem to know what to say. She turned around and I was worried she was going to call security, but instead she came back with a box of tissues, “Mrs. Torrey I’m going to get started on this right now. Just let me see your guardianship papers and the other account information we discussed. We are going to find out as soon as we can how to proceed. What is your cell number? I will call you as soon as I hear anything.”

I was shocked. Not prepared for her to be so helpful. I opened my green Whole Foods bag, pulled out the paperwork she asked for and said “Thank you.” There was nothing more for me to say. This is our life. It’s filled with paperwork, disappointments and reminders of what could have/should have been.

Without another word, I stood up, grabbed my green Whole Foods bag and turned around to walk away. I cried the whole way home and then went into the house and cried some more. I called Dan and cried. Then I called Mymom and cried. Once all the tears were done, I took a warm shower and started my day again.

I needed to pick up Jack early so that we could go watch Anna play lacrosse. As Jack and I made our way to the field arm in arm, I realized my mood had completely turned around. Our life is not just filled with paperwork and disappointments – it’s also filled with sunny days, fun games and magical hugs. THAT should be our focus.

Acceptance

Love, Jess

UPDATE: Ms. @#$% called yesterday at 4:59 pm. Jack has been approved for Social Security. Before I hung up the phone the tears started flowing again. She must think I am nuts.

Michael and Hans (I mean, Pierre) Part 3

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Eight years ago our family hosted a party to celebrate Jack’s second transplant birthday. There was a cake and balloons and (like any good party) a table so that people could sign up for the Bone Marrow Registry. 79 people signed up that day. One was a friend of a friend, Michael Steiner. I’ve shared his story before, but it continues — here’s the update:

So I did the marrow (“Drill baby! Drill!”) donation back in September 2015. Then a few months after that I did the white blood cell donation (“Spin baby! Spin!”) for my cousin, … because we’re all cousins. #ScienceIsReal

I knew he was in Europe, but I guessed he was in Germany (biggest country, my dad is ethnically German… so odds were on Deutschland over all others.). But it turns out Hans, is not Hans; he’s Pierre. Yes, he’s in France. I was thinking I would call him Francois, but I can never be sure to spell that with i-o or o-i. Oy!

Anyway, I found out the France part because Be The Match called me again in December 2016 to do another white blood cell donation, but this time a nurse would jack me up with some filgrastim over 5 days before the “harvest”. The filgrastim would make my body over-produce the white blood cells so the machine can spin out a better dose for Pierre.

The procedure was set for February 1st (aka “February Fools’ Day”).

I didn’t have many side-effects from the filgrastim. Only some sleeplessness and a low fever because the body gets confused with all those white blood cells around. “What’s the matter? What’s with all the white blood cells? Are we sick? What the heck?” HA! I got to stay in a hotel in the city the night before the harvest because my appointment with the needles was at 7:30am.

Since white blood cells only last a few days, Pierre got the “booster pack” within 24 hours of the harvest. I thought that was pretty cool.

Unfortunately, I’m very unlikely to be able to help Pierre again, at least with regards to his Leukemia. My handler at Be The Match told me I’m “getting to old for this s**t.” (Roger Murtaugh – Lethal Weapon). But seriously, I can be in great shape, but I’m already 45, and my cells aren’t going to be helpful to Pierre after a certain age. (I imagine the bag of white blood cells arriving in France and them saying “Ça sent un vieil homme.” Don’t you love how “old” in French looks like “vile”?)

I probably won’t get an update on how Pierre is doing, and I don’t need one. I hope he hangs in there for a long time, but I know how it all ends!

A big merci beaucoup to Jesse Cappello Torrey who had that “swab party” those years ago.

Merci to you Michael!!!!

Love, Jess

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The Eagle has landed. Smiles and Duct Tape has been released. It’s out of my hands and out there for all to see – and read – and judge – AHHHHHHHHH!

I have lived my life trying to keep expectations low. If you strive for an A and end up with a B, you’re disappointed. If you strive for a C and end up with a B, you’re thrilled. I‘ve been a solid B most of my life and proud of that accomplishment. I pat myself on the back almost every day. Even days when I’m making dinner still unshowered in my yoga pants, if my family made it through the day and is being fed, it’s been a successful day!

Smiles and Duct Tape is the first time that people have rather high expectations for me. I do think that my writing has improved over the last ten years, and I’m proud of my 500 word essays on this blog, but the book is 49,000 words – in a row, it’s about the worst 1000 days our family has ever been through, AND I’ve never written a book. I hope people are looking for a solid C performance and give me a big high-five when they discover it’s a B, maybe B+.

If you read Smiles and Duct Tape and enjoy it, I encourage you to write a review on Amazon and/or Goodreads. If you read it and think I should stick to 500 words at a time, please keep that information to yourself.

The book is currently available at Deeds Publishing, at our beautiful local bookstore WORDS, Amazon (paperback and eBook) and my basement. Please contact me for quantity purchases (i.e. book clubs/super fun holiday gifts for the whole family) and I will give you a deal.

Love, Jess

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Guardianship – Jack made it easy(ish)

I guess there are worse reasons to take your eighteen-year-old son to court, BUT today was a tough day.

When a person turns 18, they legally become an adult and are expected to make decisions about their life – medical treatment, finances, education, etc. Guardianship is a legal proceeding in which the court is asked to find the person in question unable to manage his/her affairs effectively. A guardian (or guardians) is/are appointed to make all decisions on behalf of the person.

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Today Dan, Jack and I went to court to prove to the State of NJ that Jack is too disabled to care for himself. He is too limited to make decisions regarding his care and well-being. He is (and will always be) dependent on us. Heartbreaking.

Like most heartbreaking things having to do with Jack – it was Jack that made it bearable. He was in a great mood this morning as we got him scrubbed and ready to make a good impression on the judge. He smiled the whole way to Newark, eager to see his buddy Adam (our lawyer) and to meet a few new friends. Jack always loves an adventure.

When we told Jack it was going to be like Law and Order he didn’t seem impressed, but when Dan said, “I wonder if Judge Judy works here”, our boy laughed and laughed. It’s hard to take things too seriously when you have Jack chuckling next to you, but when we needed to go in front of the judge, I could feel the tears start filling my eyes.

Everything went off without a hitch. We just needed to sit as the judge read through all the paperwork – proof that Jack needs us to be his legal guardians (doctor’s notes, school information, interviews with us and others who know Jack). I did my best to ignore the details of Jack’s limitations get repeated over and over again. I’ve developed a talent of keeping a smile on my face and nodding politely as I block out information. Dan’s bruised hand was the only evidence that any of the words actually made it to my ears.

I’ve accepted Jack’s challenges and understand that, as a special family, we need to do this stuff. The only thing that really bothered me about the whole experience today was the use of the word, incapacitated. It was used through the hearing over and over and over again.

incapacitated
(adjective)
 Ivan did not expect to be incapacitated for more than a few days: disabled, debilitated,           indisposed, unfit, impaired; immobilized, paralyzed, out of action, out of commission,    hors de combat; informal laid up. ANTONYMS fit.

I know that words need to be attached to circumstances, but of all things to call Jack — incapacitated is not one I would ever use. He’s more full of life than anyone I know. I understand that he needs (and will likely always need) our care, but as I heard that word I couldn’t help but want to stand up and scream “I OBJECT!”

I didn’t – I played the role of calm mom and didn’t even let myself even cry until I kissed Dan goodbye and dropped Jack safely off at school. I am so #$%^ing glad that it’s over.

Love, Jess (proud guardian of JackO)

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Jack makes things easy(ish)