Thank You For Visiting

 

Well, here we are, last day of the month and I’m afraid I fell woefully short this year.  There is, for me, such joy in sharing our stories with all of you.  But I simply did not have the available time to do this blog justice this year.  Know that Coleman had plenty of challenges, but plenty of accomplishments too. 

Alongside the health issues, Coleman had to let another sibling leave for college.  Emma left in mid-August, and in the weeks leading up to her departure, he talked a lot about her leaving and we reminded him how Abby left and then came home, and that the same thing would happen with Emma.  But having them both gone was hard on him (Abby took a gap year but took a job in Vail for the season) and he asked for months when they would be home or when he would see them again until finally we decided to take him to visit Emma in Vermont.  He was super excited to go but as we strolled a beautiful farm there upon arrival, he was quiet and withdrawn.  He barely said anything for the entire weekend that we were there, and on the way home just said flatly “Emma is not coming home today.”  We had prepared him, of course, and I guess maybe he knew it, but I think perhaps leaving her again weighed on him so much that it darkened his mood the entire time we were there.  

Gus, the puppy we got for Coleman, has been little consolation in the girls’ absence.  Grown into a much larger dog now, Gus is a joy for everyone but Coleman.  He cares just enough to want to know exactly where Gus is at all times, but not enough to pet him or talk to him.  If Gus leaves the room, Coleman will ask where he went.  If Gus goes out for a walk, Coleman wants to go.  If he goes upstairs, Coleman wants him to come back down.  When he goes up to bed, he insists Gus come upstairs as well.  But ask Coleman to pet him or talk to him?  That’s a hard no.  In reality, Coleman’s relationship with Gus is an accurate metaphor for his relationship with pretty much most people:  I want to be near you but I don’t really want to talk to you. 

Coleman continues to work hard at mastering daily living skills, with the good help of school and our wonderful in-home services team.  He’s done an amazing job at learning to shower on his own and I can envision now (when I never could before) that he will actually get there and have independence in this area.  He is working on exercise too, and Covid gave him both the time and space to work on a ‘gym’ routine, including treadmill, spin bike, weights, and yoga.  Again, his home team put together an independent schedule with pictures that takes him through each of these activities. The objective is that eventually he will be able to come home from school, pick up the activity schedule and bang through each of the workouts independently.  I know what you’re thinking and I’m there with you:  now would be a good time to ask his team for my own workout activity schedule.  J

Coleman is back at school full time now, in the new program in Scituate that he loved so much last year.  I love the program too, where the teachers and aides focus on a much bigger picture than simply academics.  Coleman goes for walks, spends time helping in a garden, takes classes learning to use a microwave, or how to make breakfast – lots of different things.  To me, though, the thing I love best is that they allow Coleman to get up and walk around the classroom if he wants.  This is important because I think for Coleman, pacing is a coping mechanism.  He does it at home a lot, especially when feeling heightened emotion - excited, nervous or sad - and that his teacher recognizes this means so much to me.  They are a loving team, concerned about Coleman as a whole person, and making the change to attend this program was one of the best decisions we have made.   

Overall, yes we had some rough patches this year, but in many more ways it was good. Coleman is learning to adjust to new demands and new expectations.  He is learning to be flexible in the face of new challenges, and learning to accept that what is new may not be easy but is survivable.  And he’s learning that every single day we are given another chance to try again.  We’re enormously proud of him and the beautiful boy that he is.  

Thank you for visiting, you can never have too many super duper super swell friends. :)

Birds Nest Catching.

https://www.facebook.com/1447531923/videos/10225861215904212/

 

A Bedtime Story

 

WAIT! 

I can’t believe that in the array of good new I chose to share, I neglected to share the biggest and best news of all of Covid!!  It’s a short, beautiful story. 

Once upon a time there was a little boy who slept in his parent’s bed.  And then he didn’t.        The End.

 

Yay!!  Coleman is FINALLY in his own bed!! 

(Forget that we moved his actual bed into our room.  Forget that we now have a king bed, a queen bed and a dog bed in one room, vaguely resembling a flop house.  What matters is the kid is in his own bed!  Hip Hip Hooray for communal living!! )

Winning During Covid

 

Despite a few rough spots and the general displeasure that was Covid for everyone, we managed to find ways to have fun, and found many spots of happiness spattered throughout the year. 

Early in the summer we had the awesome treat of meeting up with Coleman’s Pan Mass Challenge team.  During his Leukemia days, he was a Dana Farber Pedal partner for a team riding in the Pan Mass.  Almost all of the kids in treatment are given a team to partner with and the team rides in honor of that child.  One of the guys on Coleman’s team, Gerry, has ridden every year since that, and has maintained Coleman as his partner, riding every year in his honor.  He updates all of his donors each year on Coleman’s progress and he’s raised an insane amount of money for Dana Farber over the last 15 years. We feel so enormously grateful to Gerry and his team.  This past summer, the team rode an adjusted ride due to COVID, riding over 100 miles and stopping at homes of their Pedal Partners!  They came to our house, met Coleman, and gave his own PMC flag.  When they left, we rode with them out of the neighborhood.  It was a day we’ll always remember!

Later in the summer we introduced Coleman to kayaking on the Harbor, which went remarkably well and led to several trips over the following weeks.  Coleman sat like a King as Billy paddled them both around the harbor in a two-person kayak.  The girls and I enjoyed a substantially less strenuous effort in single kayaks but we all agreed it was another activity we could add to a short list of things we could all do together.

And of course let’s not forget Storyland.  We certainly won’t – much to our collective dismay – we’ll be going there forever.  Coleman starts asking about his annual excursion to the roller coaster exactly one minute after we finish the trip in the prior year so we were going – Covid or not.  Emma lucked out, already away at school, but we dragged Abby along – literally dragged her into the car - and off we went.  We arrived safely, rode the roller coaster roughly 35 times and departed.  We probably said 1000 times over the course of 24 hours “We definitely just caught covid”  but we never did, and we enjoyed the three hour drive home in peace before Coleman asked as soon as we pulled into the driveway, “We can go again when?”

Perhaps, best, though, was Coleman’s birthday.  I mean, everyone this year was all “This is the worst birthday year ever!”  Well, Coleman had a fantastic Covid birthday so we’ve got that.  We decided to have a birthday party at Starland on the go-carts this year.   Coleman loves the go-carts and its outdoors so we figured maybe some kids would come despite Covid.  We had arranged to have the place available to us for an hour prior to opening to the public.  We invited all of the kids in his new class, but we were worried they wouldn’t join us both because of Covid and also because they barely knew Coleman – he had only been at his new school for 3 months before it closed due to Covid.  So we also invited our own extended family – to be sure we had some warm bodies around and Coleman and I weren’t circling the track alone.  Part of what he loves is the narrative I shout as we ride.  “See ya later, suckers!” or “Move over Buddy, we’re gonna win this race!”  It’s bad enough that I scream these phrases at complete strangers when we typically ride, but to scream them at no one would be a new level of crazy.   Well, everyone in his class came – even some of his teachers! – as did our family so it was a bash really.  We took as many rides as we could in the hour, giving everyone a chance to ride, and when it ended we sat up at the picnic tables and shared cupcakes and treats.  It was an amazing day, and it lifted Coleman for the entire weekend.  About a month ago he said, “Remember when you had your party?” which of course means he wants to do it again, and who am I to deny the child?  “I DO remember! That was a fun!  How about we have a party again in May!”  He jumped out of seat and started his excited pacing, repeating over and over again, “How about we have a party again in May!”  The boy deserves a second party is all I’m saying. 

So see, good things did happen!  Mini PanMass event, kayaking on the harbor, roller coaster at Storyland, and a birthday party at the Go Carts!  AND we took our Christmas tree down before St. Patrick’s Day this year!  We are GD Winning at life this year!! 

Talk to you tomorrow, wrap this year up!

Just Like Us

Coleman and I were sitting in the playroom last night.  He was watching on one of his shows, and I was loosely paying attention as I sat with a glass of wine, intermittently throwing Gus his toy to fetch.  Coleman has yet to outgrow any of his shows, and he finds great pleasure in stopping and starting the same scenes over and over again. 

Last night, he paused the show and looked up with a big smile. “Just like us!” he said.  He had paused the show on the picture of the family above. 

This is a common occurrence, Coleman pausing the show and saying happily “Just like us.”  He does this often, but most frequently at a time when the characters in the show are doing something he loves to do, or misses and wants to do again.  Sometimes the similarity he sees is obvious, and other times less obvious.

I looked at the scene he had paused.  I was trying to see the common denominator between the picture on the screen and our family or something we had done previously. I couldn’t find one.  “How are they just like us?”  I asked him.  He looked back at the screen, and said it again.  “Just like us!”  “How?” I asked again.  Then he un-paused the show and hit rewind for a few seconds and paused it again.  He looked back at me with a big smile.  “Just like us!”.  The frame he now had frozen on the screen showed one of the same characters, this time hauling a big red suitcase.  

“Ahhh!” I said, recognizing right away that he was referring to our red suitcase.    We use that suitcase once per year, for our annual trek to Florida.   This past year it was cancelled due to Covid.  “Just like us!” he said again.  I laughed out loud and said “Yes, buddy, they are exactly like us!!”  We went on to talk about when we could go to Florida again.  Afterwards, he went back to the original frame and froze it again.  He stood staring at the picture smiling.  "Just like us" he said again.   

May your family’s doppelgänger be as fun as ours. 

 

It's Not Covid Visit #2

 

I suppose we should just get to the Second Visit that wasn’t Covid.  Rip the band-aid off and be done with it. 

So, to set the stage here, I’m going to first tell you that I’m going to use the acronym “BP” every time I want to say Bloody Poop.  Yes, I wrote Bloody Poop.  So that should give you an idea of where we’re headed.   

In the early part of last year before Covid began, Coleman started to have an issue with BP.  It wasn’t the first time.  He’s had BP before – maybe 2 or 3 times – each time lasting roughly 3 weeks.  On each occasion, we visited our pediatrician and GI specialist, each time had a litany of blood and stool tests, and each time the BP simply resolves on its own.  It’s really nice BP like that.  J

But this time, the BP wasn’t so nice.  It started in January and we followed the same steps we had in the past:  multiple visits to the doctor and multiple blood and stool tests.  Tests came back negative for nearly everything they tested.  But the BP didn’t go away.  As the weeks progressed so did the BP, until Coleman couldn’t manage the day without an accident, something he had never done before.  The amount of blood we were seeing was really concerning, and finally, his team decided to do a Colonoscopy.  Except the first available slot was 8 weeks away.  Coleman grew pale and looked sickly, but the doctor continued to assure us it was ok to wait for the procedure.  And then along came Covid, and they cancelled it two weeks before we were to have it.  And the BP were still going strong.

We wondered how Coleman could possibly last like this, and we tossed around the idea of going the E.R.  But we were perhaps even more terrified of Covid, so we stayed put, praying things would be ok.  And then, suddenly and miraculously, the BP stopped, almost three months after it had begun. 

The reprieve was short however, and toward the end of the summer the BP was back, this time with a vengeance.  The bleeding was far worse and within two weeks, Coleman was vomiting and we were on our way to the E.R.  It was a stroke of good luck that Coleman’s GI doctor was on call, and without hesitation, put him on the list for an emergency colonoscopy and endoscopy.    We spent almost a week there, and left with a diagnosis of Colitis with intense inflammation in his colon.  He was put on a three month round of Prednisone to get things under control (sidebar: prednisone blocks the absorption of insulin so it was awesome that Coleman’s pancreas had decided to stop working a month earlier).  The Prednisone worked perfectly but only a couple of weeks after we stopped it, the BP were back. We tried a couple of different alternatives, none of which worked, and we ended back on the Prednisone three times since.   We have finally decided to go with the GI doctor’s recommendation to start Remicade.  It’s an infusion that Coleman will ultimately get every 8 weeks, after a more frequent build up.   He starts next month and fingers are crossed that it’s the solution he needs. 

Ok, that’s all the bad news I have, honest.  And despite how awful it sounds, Coleman is really doing well.  He’s the strongest kid ever.  The rest of us are good here too – Billy’s constant jokes keep us laughing – and we strive to maintain a positive outlook.  This latest hiccup will not break us or Coleman – we’re all way tougher than this. 

Ok, now, onto happy news.  Next update will be all rainbows and unicorns. 

A Beautiful Place To Walk

 

It’s hard to say what the impact of Covid isolation has had on Coleman, but I’d say his attention is one of the first things that comes to mind.  All of the hours without a schedule left him with a lot of free time to wander and stay inside his head.  We tried to keep him busy and fill his day with meaningful activities but it was a long day to fill without school.  During this time, he’s grown more absorbed in his own thoughts, and getting him to attend to things has become more difficult, even with things he loves to do.  Playing games and reading a book are a constant back and forth of “are you listening Coley?” and stopping the game/book and telling him “When you’re ready we can start again.”  But even that works less frequently.  His inability to stay focused makes me wonder how much of anything he really absorbs, and how realistic it is to expect him to retain complex, multi-step actions.  But then, something small and wonderful happens that reminds me yes, he is capable, he is listening.      

One day last summer, we went for a walk at the harbor.  It was early in the day and the beach was quiet and warm.  During Covid, we developed a routine for exactly where we would start and end every day.  If you know Coleman, you know there is always a routine.  Choose your first route carefully because it will be become the same route you have to walk every time.  Our walk took us north along the beach to the rocks, up to the walking path and we followed that to the end.  We turned around, went back the same way, down the path, across the beach, past the parking lot, past the boat launch, around the statue and back to the car.  He loved the walks there, scripting out loud and smiling, and it was nice break from the monotony of the day, so we took him nearly every day, sometimes twice.  One morning as we made our way off the beach and onto the walking path, we passed an old woman sitting on a folding chair, reading a book.  She had a tiny folding table beside her and I envied how peaceful and relaxed she looked.  I nodded and said “Good morning” as we passed her, Coleman outpacing me and jabbering away to himself as he strode past her up the pathway.  On our way back, she stood up as we approached.  “Every day I am here, I see you or your husband walking with him,” and she looked over to Coleman. “He seems very happy.”  She was older than my mother would have been but still she reminded me of her.   “He is happy!” I said, half lying because I left off the words right now, and added “He loves walking here.”  Coleman was beside me, looking down, and repeating segments of a Max and Ruby episode and laughing.  I always feel like I have to explain him when he does this, to ease the awkwardness of his behavior, but before I could start she said “He reminds of my friend’s grandson.  He has autism too.”  I was relieved to not have to explain him.  Coleman stopped scripting and looked at us.  “Well, I just wanted to say he is lucky to have you.  I’m glad you have such a beautiful place to walk together.”  I laughed and thanked her and Coleman and I continued on.  Coleman led as I followed him back down the path, across the beach, past the parking lot and the boat launch, around the statue and back to the car.   “That was a great walk Coley!” I said.  He smiled. 

Later that night, as we were getting ready for bed, I said “I hope you had a good day today, Bud.  Thanks for going for a walk with me this morning!”  He looked up at me and said, clearly and without hesitation,  “I’m glad you have such a beautiful place to walk together.” 

So when I think I’m not getting through to him, or I think he isn’t absorbing, I remember this story and I know.  Somewhere, somehow, in some tiny corner of his brilliant brain, he is absorbing it.  He’ll use it when he needs to. 

It's Not Covid Visit #1

I don’t think I need to belabor the point about how awful COVID has been – it’s been pretty much the same all around.  The mental health toll this pandemic has taken on everyone, especially our younger generations, will be felt for years to come. 

For us, we came out of the gate like a race horse, certain to beat boredom with creativity.  We put together new activity schedules, crafts-of-the-day, game nights…anything to make passing the time more tolerable.  We packed in walks at every possible break, walking the neighborhood, the harbor, the beach, World’s End.  I was grateful from the start that Coleman liked to walk.  We had a lot of family time, and brought back, like so many of you did, Cocktail Hour, giving decency to drinking before five.  We zoomed with friends near and far, laughing over the craziness of it all, and we baked and cooked like life was surely ending.  But life didn’t end, and as the days grew into weeks grew into months, our waistlines widened, our enthusiasm waned, and our focus became fixated on when it would all end. 

Coleman was no different, except the uncertainty of what was happening definitely confused him and provided a significant boost to his anxiety.   The ‘School is broken’ phrase bought us a lot of time, but as summer approached, I think Coleman accepted that school would never be back.  He accepted that his friends were gone, that his social groups were gone, and that our extended cousins and family were gone.  He stopped asking when we could see them and I stopped telling him ‘soon’.  His days were unbelievably long – but he found some serenity in his daily activity schedule and going for walks.  We walked A LOT.

Around the beginning of June, Coleman got sick.  We assumed it was COVID, and after talking with his doctor, we headed into Children’s.  He was vomiting and lethargic, but had no fever.  They allowed Billy and I to both be there, and when we arrived, they took us immediately.  The drew labs and, after a while, the doctor came in to say it they were just waiting on some additional lab results, because one his numbers was high.  I think Billy and I both had the same thought:  Leukemia was back.  “What number was high?” I asked, dreading the answer.  “His sugar" he replied.

There was a time when I would not have known what those words meant.  But 8 years ago, I heard those exact same words at the pediatrician’s office with Emma.  She had been having terrible, frequent headaches.  After an initial exam, the doctor said “I’d like her to pee in a cup.”  When he returned after reading the results, he closed the door behind him and took a deep breath.  He quietly said “Emma’s blood sugar is very, very high.  You’re going to need to head into Children’s Hospital.  She has diabetes.”  I said “you mean you think she has that, right? Can’t something else be making it high?”   He shook his head.  “I’m really sorry but there is only one reason for high blood sugar like this and that’s diabetes.”

There are two different types of Diabetes, aptly named Type 1 and Type 2.  In Type 2 diabetes, your body still makes insulin but it is resistant to it and may not make enough of it.  Type 2 is more likely to occur in people who are over the age of 40, overweight, and have a family history of diabetes. 

Type 1, often referred to as Juvenile diabetes, is an autoimmune disease where the body attacks its own beta cells in the pancreas.  Beta cells make insulin, a hormone your body needs to allow glucose (obtained from food you eat) to pass from your blood into your body’s cells.  Without insulin, glucose can’t make its way into your cells, and ends up circulating in your blood.  High blood sugars can cause headaches, dizziness, and eventually DKA (diabetic ketoacidosis) which can be deadly. 

Normal blood sugar ranges are around 90-100; Emma’s blood sugar when she was diagnosed was nearly 500.  Before 1922 when Insulin was discovered, Type 1 diabetics died.  But lucky for us, Emma was able to get the insulin she needed and lived.  Still, her life has been very different since that day.  She has to count the carbs in every bite of food she eats, and calculate the amount of insulin she needs to give herself to ‘cover’ those carbs. It’s a delicate balancing act: too little insulin leads to high blood sugars, too much insulin leads to ‘lows’ that can literally kill you.  All on the shoulders of a ten year old.  For many years, she had to have 5 or 6 insulin shots daily.  Now she has an insulin pump, eliminating the daily shots, but she must still remain vigilant in counting carbs and watching blood sugars.  It’s a lifelong disease without a cure. 

So you can imagine my reaction when the doctor said Coleman’s blood sugar was high.  I could not believe it.  “Are you telling me he has diabetes?” I asked incredulously.  He seemed surprised that I knew that was what a high blood sugar meant.  “Yes.  We’re just checking now to see if he’s in DKA” and turned and left the room.  Billy and I stared at each other in disbelief.  “Did he just say Coleman has diabetes?” Billy asked.  I nodded silently, already wondering how the hell we would manage this.

But God is good, and we have managed it.  Coleman is an absolute rock star.  He handles the 5-6 daily shots like a champ.  He reluctantly allows us to attach to his arm every 10 days a device that actively reads his blood sugar, sounding an alarm when he gets low and preventing a devastating outcome.  He tolerates nurse visits, blood sugar finger pricks, and the occasional 11pm force of juice to bring up a low.   We are lucky I guess that we went through it already with Emma – we knew exactly what we were in for.  But it’s a lot.  A lot for him, and a lot for Emma.  A lot for any kid to try to manage when honestly, being a kid these days is hard enough.    

So there you have it.  Our first IT’S NOT COVID visit to Children’s.  That's right, I said First.  I warned you I had no good news to share. 

Welcome Back!

Welcome Back!! 

I don’t know about you, but for us the past year has been SO MUCH fun and time has FLOWN by.  I mean literally just whoosh, gone!  Whiplash fast. Lightning Speed.  And the days, they just can’t seem to last!  We wake up and amidst all of the fun, bam! the day is over!  So, so much fun! 

 

That’s, of course, a bunch of GD BS.  It’s been a torturously long year. It feels like 3 years. Maybe even 4. And there has been almost no fun.  So it won’t surprise you that I have nothing to write about this year.  And my boy has had a rough time.  Negative Nancy here.  But I do promise to try to find some good news to tell you about from the last 365 days.  Surely there is something good.  In fact, you know what?  No one cried today!  There it is!  Good news!  Enjoy it while it’s true, folks, the night isn’t over yet.   

Thank you for stopping by again – it’s our eighth year!  We're so glad you’ve come!