Double Vaxxed, Feeling Grateful

by | Mar 19, 2021

Above: James and Neal one year ago, at the start of pandemic living.

Elizabeth, James and Neal, fully vaccinated.

One year ago, I couldn’t wait for spring. Winter had been tough. As it happens, tough winters have come with the territory since our son James was born. Over the years, he’s spent one Thanksgiving, one Christmas, two New Year’s and a few Valentine’s Days in the hospital. James, who has Down syndrome, was born without an esophagus and with a floppy trachea, resulting in recurrent pneumonia. Now, at age 23, he has bronchiectasis (or as we just say, lousy lungs).

A year ago, he started getting sick in late fall and ended up in the hospital in mid-December. He came home, but on Christmas Eve he was feverish and three days later, he was back in the hospital. On New Year’s Eve, James’s oxygen saturation just kept getting worse and his chest was heaving with every breath. I knew what was coming. He needed to go on a ventilator. And so, at 1:30 a.m. the first day of 2020, the team crowded into his room and intubated him. I knew it was the right thing to do but I also knew it was no guarantee.

James was on the ventilator for a couple of weeks; he got feeding tube inserted during that time (his second – the first was put in the day after he was born and lasted for four years). He’d been aspirating food and liquid into his lungs. The specialists had recommended James get a feeding tube during his hospitalization in mid-December, but at that time it had been impossibly hard to consider. This is a person who loves food. Loves food. And he’d gone through three major surgeries and a boatload of procedures on his esophagus to give him the ability to eat without choking.

But James’s return to the ventilator (an old, if not fond, acquaintance) made the decision to accept a feeding tube a lot easier. Once he was discharged and back at home, there were some tense moments early on where he would try to take food out of the refrigerator. James is a loving, funny, peaceable person but he was angry about not being able to eat by mouth. And we couldn’t blame him. Because of the level of his developmental disability, he didn’t understand the connection between eating by mouth and illness. By some miraculous grace, however, James didn’t stay mad very long. He tried to eat – grabbing the yogurt container when we were out of the kitchen, eating that pancake we left by the stove – but the anger was gone. We got a child-lock for the fridge, then another one after he figured out the first one.

In early March 2020, James got sick again. On March 6, he was sick enough that, even with oxygen and various respiratory tools at home, he landed back at Rhode Island Hospital. With COVID-19 now in the state, the hospital was a different place. They weren’t going to let me stay with him as I usually do. They relented after a couple of nurses who’d come to know him earlier that winter said it would be ridiculous to have James there without a parent. I saw the mask shortage up close during that stay – nurses were only allowed to have one mask a week – one mask. Brown bags were taped to the wall in the hallway, each one bearing the name of a staffer. It was a mask repository, until the person returned for another shift.

James improved so quickly he was discharged the following Monday, March 9. We left the building just as officials there were setting up new protocols at the entrance to keep most people out – I couldn’t help feeling we were leaving just in time.

In the weeks that followed, suddenly everyone was talking about ventilators and respiratory distress and hospitals. It was as if the world had learned the language we’d learned through James these past couple decades. James was home (his program closed and outside caregivers banished) with his mom and dad. Our COVID-19 existence began. We knew the coronavirus would be awful for James, perhaps deadly, so it was easy to stay home. And quarantine worked for James – he was pretty healthy, with only a handful of illnesses and no trips to the hospital.

We found little COVID silver linings – a virtual music therapy session where we learned James knew his notes; virtual martial arts with the wonderfully patient Miss Chanel; James learned the YMCA song (!), and his dad expanded the nighttime rituals, singing whole concerts with him at bedtime. Then there were just the odd James things: how he liked to dress us those first first few months, bringing down shirts for us to wear, refusing in his quietly persistent (annoying?) way to let us say no. Never mind that he was bringing us HIS clothes, clothes for a person 5 feet tall and just shy of 100 pounds (hint: we’re considerably larger).

Summer got a little more exciting for James – he got to go to the Greenwich Club pool and to the beach, both popular destinations. We were grateful we could work easily from home; for me that wasn’t a change, but for Neal, it meant new routines he wasn’t sure he’d like. Yet, he and we adapted to this new life.

All the while, we just kept hoping the vaccines being created would be ready soon.

James’s life shrunk again once fall arrived. He handled it as he’s handled so much in his 23 years, with smiles and a matter-of-factness that I try hard to emulate.

When the vaccines arrived in December, we listened carefully for when James might be eligible. In mid-February, he got his first dose. He’s been fully vaccinated for a couple of weeks now. Neal and I both just got our second doses (his Pfizer, mine Moderna).

The world has reopened a bit. We are hoping James will be able to join a new program sometime this spring or summer. He’s done amazingly well with his virtual activities – including an awesome Special Olympics St. Patrick’s Day Dance the other night – but he misses being with others. We’ve learned that masks are an excellent idea to help keep James safe going forward, at least in the winter, since COVID-19 is only just one virus in a world full of them.

And it’s wonderful to think our other children, James’s sister and brother, can just come visit again, without having to quarantine for two weeks before and after.

I cried as I walked to the car after getting my second dose at the special clinic for people with disabilities and their caregivers Friday. Really, I’m a little awed by it all. And profoundly grateful. That spring I was so hungry for a year ago? We had to wait a year, but maybe it’s here now.

James doing virtual martial arts

James deciding which shirt each of his parents should wear. 

James working on valentines.

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March 20, 2021 6:34 am

There is another article in this issue about a national treasure. You, Neal, and James are treasures as well. There is a special place in heaven waiting for the three of you.

Hub breNnan
Hub breNnan
March 20, 2021 7:48 am

Beautiful Elizabeth. Love, life, community….that’s what it’s ALL about.

Tracie Truesdell
Tracie Truesdell
March 20, 2021 8:24 am

We love you all so much. Anna and Henry have missed James Mac terribly. We are so grateful that we will be able to spend time with him again (hopefully soon!!
We love all things McNamara💗

Kevin C Malloy
Kevin C Malloy
March 20, 2021 9:48 am

Special, …very special!

Thanks for sharing with us.

Neal mcnamara
Neal mcnamara
March 20, 2021 11:23 am
Reply to  Kevin C Malloy

Thanks, Kevin. I hope you are well. (p.s. Still waiting to hear from the Court.)

March 20, 2021 4:09 pm
Reply to  Neal mcnamara

I so appreciate your sharing the difficult journey your family has endured. I hope you all stay healthy.

Claudia Smith
Claudia Smith
March 20, 2021 10:04 am

Thank you Elizabeth for sharing your story, your intimate moments of life at home this past year with your husband and James. Love goes a long way. I have worked in the school system for 20 years, and this was the first year I didn’t get sick – not a sniffle, sore throat, ache or congestion. I credit mask wearing, which I will probably continue, and the intense cleaning protocol by our custodians and auxiliary custodians as well as social distancing. The kids and families, along with school staff have been real heroes here !!

March 20, 2021 10:35 am

Wonderful article!! Thank you for sharing.

March 20, 2021 11:58 am

Lovely writing, as usual, Elizabeth. James, you & Neal should not have had to wait so long to be vaccinated. I have friends who have chronic illnesses and immunocompromise (including two who had COVID) who have only just become eligible. Things are looking better now, in terms of availability, and that brings some relief. Life will not return to normal for many of us for a long time, but hopefully, spring, summer & will make life more joyful. Thanks for sharing your story once again. Love to y’all.

Tricia Leddy
Tricia Leddy
March 20, 2021 11:59 am

Such a nice story. Great to hear how well James is doing.

Sarah Cashore
Sarah Cashore
March 26, 2021 2:39 pm

He is one resilient fellow for sure, and you are one resilient family! I was so happy to read this update and am wishing continued health for all of you (and hope you see Catherine and Aidan soon!).

March 26, 2021 3:06 pm
Reply to  Sarah Cashore

Thanks, Sarah! I hope you and your family are well.

Melissa shaw
Melissa shaw
March 20, 2021 4:15 pm

Beautifully written, Elizabeth. You brought happy tears to my eyes. So glad James is doing well! xo

Nan shea
Nan shea
March 20, 2021 8:25 pm

Beautiful story…thanks for sharing. 🥲

Ric saborio
Ric saborio
March 21, 2021 11:17 am

Thanks for keeping us posted
I always look forward to hearing
how James is doing. Give him a high
five from me ✋🏼

Laura Sullivan
Laura Sullivan
March 22, 2021 9:47 am

Your decades-running saga of Life with James continues to inspire and to teach us the value of amazing healthcare, resilience, resourcefulness, and the love of family and friends We are reminded not to sweat the small stuff, to give thanks in all things. and to follow both the science and our faith. So wonderful to see the three of you in church yesterday!

March 22, 2021 3:04 pm

This is an amazing story. Thanks so much for sharing it. Parenting is so much more than any of us ever anticipate. I hope I’ll be able to respond to challenges the way you and Neal have, Elizabeth. And I am so happy that James got his vaccination and that he has you both taking care of him. God bless.

March 23, 2021 9:19 pm

We’re so glad you 3 have been vaccinated! Hope you have a lovely summer.

March 26, 2021 9:03 pm

Thanks for sharing your story. I don’t know you personally, but live in town, and am thrilled to hear your family got vaccinated and he can get out in the community safely this spring!


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