Fatherhood Journals

A selection of journals, from Stuart.

October 10, 2006

She was blue. Quiet. Unresponsive. Floppy. My God I thought she was dead. 

The doctors took her straight away to a table across the room, before Wren, in her exhaustion after hours of labor, even had a chance to look at her. I stood helpless, a useless man watching these people in scrubs: one holding a facemask over her and squeezing a bulb, another with a stethoscope on her chest, and a third holding a bottle of some fluid.

A few pumps of the bulb.

Doctor: “Now?”

Nurse: “Nothing.”

Doctor: “More surfactant.”

Wren: “Stuart? How is she?”

Bulb.

“Now?” 

“Nothing.”

“More surfactant.”

“Stuart? What’s happening?”

Again. Again. Again. So long. So blue.

And finally a cry. Weak. Like a kitten.

“Stuart?”

“She’s fine, honey. She’s doing great.”

February 12, 2007

I sat with her at Children's Hospital, four months old. The entirety of her young life in the neonatal intensive care unit. So small, so vulnerable. She had beautiful steel blue eyes but hardly ever opened them, seeming to sense the world around her only through touch and sound. She often seemed shocked by the world, her limbs and digits splaying outward, a peculiar reaction of premature babies. She always needed snug swaddling to stay calm. 

I only had an hour to be at the hospital. I held her in my arms, not sure if she could sense I was there and I started talking. The next day she had surgery to get a G-Tube. She stayed in the hospital for four months because she could not eat on her own and all her nutrition came through an NG-Tube. 

I imagined her lying on the surgical table, so small, so fragile, and surgeons cutting into her belly and something going terribly wrong. I cried, cornered with no good options. Risk the surgery or stay in the hospital for God knows how many more months until she learns to eat? 

And as I cried, talking to her, trying to convince her (and myself) everything would be fine, she opened her eyes and just locked on to me. A look of innocent curiosity, unaware of what would happen or what it meant. Just right now wondering, maybe confused. I saw love in her look, and trust. 

In that moment she was okay, not even thinking about the next moment. So I tried to do the same and just hold her, share our warmth and look into each other's eyes. Mine held a prayer that all would be fine. Hers assumed they would be.

November 5, 2007

She is over a year old and still not sitting up on her own. I want her to get better, to develop. She should be walking by now.

I wanted her to practice sitting up straight. I surrounded her with pillows so she wouldn’t get hurt if she fell. But rather than sit up, she fell backward onto the pillows and thought it was fun. I would sit her up and she threw herself back. “No!” I shouted. She was supposed to be practicing. She sat up again and threw herself back, delighted. “Rose, no!” Again she threw herself back, giggling. She was so far behind. “No!” Again, laughing hard. “NO!” Again. “Goddam it, Rose!” as I raised my hand to strike her and she stopped laughing, a dead silence, the steel blue of her eyes boring into mine, confused. 

She broke down and cried.

What was I going to do? Slap her? Why? What did she do? Why would I do that? Why would I hurt her? Because I got angry or frustrated? What the hell is wrong with me?

I am worthless. Weak! Unfit to be her father. She deserves more than what I could possibly give her.

April 27, 2009

We have a diagnosis. Autism and likely intellectual disability. Not sure how severe. Still too young. Language will be delayed. Get her started on early intervention programs. 

Wren has still not gone back to work, needing to devote all her time to Rose. I need to bring in the money and medical insurance. We are going to need it. Tube feeding will happen for the foreseeable future.

May 31, 2011

Had a nice moment with Rose tonight. Got home late from work so I ate dinner at the same time she drank her evening snack. So we chatted about her day at school. She said it was great and she played with Brenda by the play structure. We then had a funny exchange:

“Daddy, you are wearing a white shirt and black shorts. You are a skunk.”

“A skunk! Well then what are you?”

“I am wearing yellow and white. I am sunshine... and clouds.”

September 3, 2012 

Rose ate her first solid food! Nearly seven years old. Wren sat at the table eating some air puffed potato sticks with Rose watching. Rose then took one, tasted it, then chewed on and ate the potato stick. No gagging, no disgusted look. She ate one potato stick. This was a big night. 

May 2, 2013

A beautiful spring day. Wren planted marigolds in the garden, and Rose sat with me on the porch swing. She stayed unusually calm. We gently rocked. She pointed out the sound of the wind. “It's the trees. And my hair. And the bushes. It's the wind in the bushes.” Then she put her head in my lap and rested, the swing swaying with the trees in the breeze.

With Rose, we seem to bond on the porch swing and when we listen to music together. She gets talkative … almost "normal" conversation, God, forgive me for saying it … and she gets cuddly during those times. 

She remarked how, looking at her shadow while wearing her sun hat, she looked like Saturn.

June 2, 2015

It occurred to me that I most often think of Rose as her autism – my “autistic daughter” – more than I see her solely for who she is. I sat in the waiting area for her weekly music therapy session watching Rose pull books off the shelf, quietly leaf through them, then, not interested, gently place them back on the shelf. I watched her do this maybe three times, and there she was with her ponytail, jeans shorts, sandals, so engrossed in leafing through those books, and I saw her. Just a girl. Not an autistic kid, but a young girl reading a book. I realized then how rarely I see her that way and how much I absolutely love her.

In these moments I never forget she has autism but I clearly see that she is funny, charming, and beautiful in spite of it. Things are usually very hard for her. Today was a good day and I'm thankful for those moments to see completely through her “condition” and to see my daughter for who she truly is.

August 28, 2018

I had a terrible dream last night. Rose and I were in Heathrow in London waiting for our return flight to the US. We had several hours to wait so we took some time to walk around. I tried to give her a little more freedom, to walk ahead and do things on her own. We met a nice family and had some fun conversation and Rose seemed to enjoy talking with their daughter.

I excused myself to get a bottle of water or something from a kiosk near the gate, but I got held up for some reason. When I returned, Rose was gone and they started boarding the plane early. I couldn't find her anywhere, no one had seen her, and the family we spoke to wouldn't help, saying, “You should have done better taking care of her.” 

Soon enough I saw her come around the corner and I ran to her, falling to my knees, apologizing to her and holding her so tight. 

It is scary how Rose, at 11 years old and even when she's in her 50s and older, is and will be so utterly dependent on us. There will come a point where I am too sick or too old to take care of her. What then? Who will do it? She will not be able to care for herself. What did I miss? What should I be doing differently? Have I done everything I can to keep her safe and happy, to live a full life?

September 12, 2024

Rose seemed delighted today in court, sitting at the table next to ours with her appointed guardian ad litem with me and Wren across the way at the table with our own lawyer. We became the court appointed guardians for her, just in time before she becomes a legal adult next month.

I had to pay a lawyer $3000 so she could prove to the court that we are good parents and that we should be the guardians for our disabled daughter. That doesn’t even include the cost of the medical evaluation to prove she has a disability.

I understand the process. I understand why it is necessary. But at the same time it is positively insulting, degrading, that I need to pay someone three thousand dollars – WHICH I DO NOT HAVE BECAUSE I AM A HIGH SCHOOL TEACHER – to prove I am a good father so someone doesn’t come along and take advantage of my adult daughter who has no concept or understanding about how to stay safe in a world full of people who don’t care. 

At the end of the proceeding, the judge looked at Rose and asked, “So what are you going to do now?” Rose responded in the microphone for the whole courtroom to hear, “I can’t go to Wendy’s and get a Frosty because I have to go to school,” as she gave us the side-eye. 

October 15, 2024

Unexpectedly, the phone call with Social Security went well. I applied for Rose’s Supplemental Security Income (SSI), disability, and for me to be her representative payee. I'm expecting some mail soon to sign and send back. The representative payee decision should happen quickly but the disability and SSI could take up to a year. We'll be signing a special needs trust in a little over a week (more money for the lawyer), and I'll need to update all our accounts. And then I'll need to apply for Medicaid waivers so she has something to do after she ages out of the school system in four years. Ridiculous, almost inconceivably long waiting lists for those.

June 27, 2025

I sat here yesterday afternoon looking across the table at Rose eating her snack. She had at least four books spread in front of her and one opened, propped upright, as she paged through it while sipping at her straw. Her lips pursed around the straw and her head turned slightly to the left, her big wide steel blue eyes gazing sideways, scanning everything on those pages. She looks exactly the same as she did 10 years ago. I saw in her an image of 8 year old Rose having a snack in an 18 year old body and tried to imagine her at 40 doing the same thing. 

She can be so charming and innocent and delightful, but also helpless, unable to care for herself at all on her own. She can do things like put on her own music, dress herself, and on a good day brush her hair; but she will always need us to brush teeth, clean up, wash her clothes, make her food, provide shelter, get her outside and social. Everything. 

I'll keep trying to teach her more things she can do for herself but she will never be able to care for herself or take care of her own needs. She needs books, her blankie, movies, music, dresses, and friends. If she has those things she will be happy.

July 4, 2025

What the hell. This country hates poor people. Tax cuts to people who don't need them, tax increases to people earning less than $18,000 a year, work requirements for Medicare, and trillions of dollars added to the national debt, a burden which will fall on the backs of the young and the poor when they cut safety net programs AGAIN in order to balance the budget. And the rich will be richer, and the poor will be screwed.

Now what will happen with that SSI application? It’s not about the $700 a month Rose will get as part of the program. It’s that she needs to be receiving SSI to be eligible to receive my disability benefits based on my work history after I die. If she doesn’t get her SSI, then when I die, she will have NOTHING except the scraps I leave her. I’m a goddam teacher and we know that around here that work isn’t important enough to pay us for! So do you really think I have any goddam savings? You think I have a nest egg? I have enough to live off of for a year. I will be working until the day I die and I will still have nothing left. But my daughter who, God willing, will outlive me, will have nothing. Nothing! NOTHING!! Who will care for her?

WHAT THE HELL IS WRONG WITH YOU PEOPLE!!!!!!!!!!

Why is there such fear or anger about people using safety net programs? So upset about “people taking my hard-earned money” while they allow others – the poor – to subsidize their tax breaks to keep more of their “hard earned money.” In the US, poverty is an inescapable trap. You can't get out once you're in, and you are further punished for being there in the first place.

Happy Independence Day, Rose. Not only are you independent, but you are now completely alone. I do not have the money to care for you when I am gone. I don’t know what we will do.

September 20, 2025

Rose went to a birthday party at the local bowling alley yesterday. Her classmate turned 19. All her friends were there: Timothy, Isabela, Asa, Charlie, and a couple others I did not know (Mike and PJ). It's inspiring and heartwarming to see all of them play together. Rose used the kids ramp for bowling but saw that she was the only one. So she tried on her own without the ramp. Carrying the ball with both hands to the line, spreading her feet and holding the ball between them, and giving it a push. I stood by her as the ball moved down the lane like a turtle with purpose, glanced off the bumpers, then contacted the pins as if asking them to lie down one by one as they toppled in slow motion. She even got a spare once!

Charlie is a gentle giant, like a four year old in a linebacker's body. He would hurtle the ball down the lane and smash the pins to bits, then turn around with a wide eyed grin and clap rapidly. Mike latched onto me and, five separate times, asked me my name and implored me, “Look at my shirt!” 

They're all a good group, the kids and their parents. All going through the same things. All dealing with the challenges in their own ways. We should spend more time together.

To be continued...

This is a work of fiction based on actual events.

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