In Her Words: Profiles of Medical Motherhood Pt. 1

Lorri Braxton shares about loving her son and letting him go

The following story truly touched my heart. I decided to preserve Lorri’s narrative as told to me because I think it does a better job than anything I could add to it. It shows the joys, the struggles, and the impossible decisions of Medical Motherhood. It has been edited for length and clarity. (A tip of the hat to Humans of New York who inspired this first-person format.) 

If you are a medical mama and want to tell your own brutally honest story, write to me and we can set up an interview. This is the first of a series.

She was only 10 months old when I got pregnant again.

When I found out it was a boy, I was excited to have a girl and a boy. There aren’t many boys in my family. Having a boy was very exciting.

Everything was very normal during the pregnancy. But when he was born, he wasn’t sucking. He was only two weeks early, not premature. For two and a half weeks, we had a gavage tube in the NICU. While we were in the NICU, the neonatologist was running all kinds of tests. He knew there was some reason he wasn’t sucking. The genetic test was kind of the last one.

Torin has a partial deletion of the 22nd chromosome. It’s called Phelan-McDermid syndrome. There were around 600 cases when we found out. Now it’s up to 1,000.

At that moment, I didn’t know anything about it and neither did the doctor. There was so little information. 

I was definitely concerned. I read about the syndrome. I read that kids with the syndrome were usually nonverbal. Not potty trained until much older, like 10 years old. Some kids never do.

Those two things right there were my biggest worries – shockers, I guess I would say. I cried a lot there. That’s when I first started to cry about it. That’s when I started mourning about what his future would be like.

He’s 11 now. He’s very low tone. He’s very low functioning cognitively.

As a mom, you just keep moving. I did as much early intervention therapy as I could with Torin, and so that’s what I do.

I was working part-time but I quit. I was like: There’s no way I can do this. He needs everything I can give him.

We did occupational therapy, physical therapy, speech therapy. Especially speech therapy. Many kids with this syndrome don’t want certain textures. Torin was definitely slow to eat solid foods. We slowly would increase the thickness of purees. We would crush up graham crackers. We pureed food for at least a year and a half. With the help of the speech therapy, back in Milwaukee, he finally was able to eat solid food.

It was really later on, after the fact, then I realized: “Wow.” I just felt later on that that was such a blessing. I was so happy that I had a speech therapist like that. I was super grateful that we could get there.

Seattle wasn’t my style with kids. I never really enjoyed Wisconsin. My husband applied for a job in Portland and I was happy to come out here. Oregon was one of the first to have the K-plan (Medicaid program) benefits. That was a benefit of moving here that I didn’t realize at the time. That was a game-changer for us.

In 2018, after a couple of physical separations, I left my husband. He has some problems he’s not dealing with. I just got sick of it.

I had actually filed for divorce a year prior but I was so scared. I was just scared of: how am I going to support myself and my kids? And, you know, caregivers come and go.

I knew once I divorced him it was going to be pretty ugly. I stuck with a sick relationship for another year, but I got to the point of: I don’t care. I don’t care if I have to live in an apartment or if I lose my house.

I cashed in a home equity loan — shortly before I filed for divorce. My husband had taken it out for his business — $45,000, I took out maybe $30,000. I lived on that for a while. Got myself together, which was a long, expensive process.

I get a lot of assistance — all kinds of assistance that I can, food stamps, help with utilities.

Sometimes I take on part-time jobs. The part-time jobs always depend heavily on caregivers.

It was working pretty good early on because I had some really good caregivers at the time. 

But after the divorce, my credit was ruined. My credit score is horrible. If I can’t pay for it, we don’t have it. 

I do think now I can say that I was affected by both at the same time — Torin’s needs and my husband’s issues. At the time, it felt more like the stress of the marriage was the bigger thing — because then I had more support, more good caregivers.

I feel differently now with COVID, what COVID has done to us. Even before COVID, it was hard to find caregivers that last. COVID was especially difficult to find decent people and reliable people.

The impact of being a caregiver fulltime was so overwhelming. I know for a fact that I am suffering from depression or PTSD… I don’t know, I don’t see a therapist. Anything I do depends on whether I have someone here to help me, you know?

I think I’ve been affected mentally by both — Torin’s disability and my divorce. 

Then there were situations that were happening with my ex that were really concerning. He started refusing supervised visits. He didn’t exercise his right to see Torin at all. He was only picking up my daughter. Even I had to tell my daughter today: “That was so inhumane that your dad would come and get you but not your brother.”

But, then, I knew Torin was safer here, so, mixed emotions. 

During COVID, my best friend in Wisconsin, I can’t remember how she exactly said it. “Maybe it’s time you start thinking about putting Torin in a home.”

It just never occurred to me. It was like: ________.

But she was coming to me from love.

She used to work in a group home and said that the people who transition as kids have an easier time than as an adult. That was kind of a plus that I was thinking about.

So one day I finally called up his DD worker: “What do we do, what’s the process?” and I got him on the waiting list.

It’s all bittersweet. I mean, I cry all the time when I have to think about it.

But at the same time, I want to live my life.

And my daughter. She’s becoming a teenager and I can’t stay on top of her social media and text messages and the type of things you have to do. Or even just spend time with her.

She would be my number one reason and I’m number two, you know?

I’m really struggling with the lack of caregivers right now. I would spend days, weeks, calling every single agency out there. I think there are like 15. I literally call them all.

The recruitment of caregivers is the part I need help with. I know what the recruitment piece looks like. But at this point they’re just like: Sorry, we don’t have anybody.

So we’re on a waiting list. We’re number 55 the last time I checked. It’s a new home in Washington County. 

They tell you nothing. The DD worker plays dumb. I’m totally seeing a whole bunch of stuff in this process that I’ve never seen before.

I don’t know if I should talk about this but after I made a post on Facebook, I got a message from a woman who has a foster home in Eugene. She does respite care and she also has permanent care. My DD worker told me about it, but I turned it down, Eugene was too far. But then when I just got desperate again, I told them: I’d like you to contact her again.

Now I know they just completely never contacted her. Didn’t contact her. It was all too weird, and the stories just didn’t match up.

Things are moving now and she’s going to do respite in July. She would love to have Torin permanently. 

That was a big deal for me. I had a bad impression of foster homes. Where I’m from, people did do it just for the money.

This woman, I haven’t met her in person, but I talked to her. I mean, yeah, she’s getting paid. But I don’t think she’s doing it just for the money. If she was, I would probably be able to tell and I would not choose her. So, I’ll go down and see her home and how it runs, get to know her better.

I get the feeling that it’s a loving place. She has a caregiver who is a CNA and a behavior specialist. She has everything set up. One caregiver has been with her for eight years, another three years. She gets up at 5 a.m., gets everything ready — meds, feedings, caregiver at 7:30 a.m., another in the afternoon. She has 12 hours covered. She’s not doing all the work.

It’s definitely about resources. It’s really about resources.

If I had money to pay a caregiver… if I had money to pay a caregiver more than an agency and I could get better, qualified people… That is kind of why I’m at where I’m at.

The K-plan was supposed to move things from institutions to in the home. The problem is that these agencies don’t recruit, not enough agencies are doing good work, not enough good caregivers. I’ve tried them all, all of them. Every time I need a caregiver, I make like 15 phone calls. There’s definitely a crack in this system.

I am taking advantage of the emergency relief program that pays parents during COVID. It pays the mortgage. But for my mental health, it’s not what I want. It’s seven days a week. There is no break. There is no vacation.

I call it work, because it is work, I can’t do anything else. It’s like two jobs. With no break, no weekends, no nothing. Just like anybody at any job, it’s not healthy at all to work that much.

There’s a lot of guilt. But in order to deal with the guilt, I have to think about my daughter.

I’m going to go through a lot. I just allow myself to cry when I need to cry.

It’s never going to be easy. But I think it will get easier.

I didn’t expect to be here. I really didn’t. When I was married to my ex-husband, I was working at the time. We put away quite a big chunk of money for when we got old. I was planning for that so that he would never have to be in a home. I cashed that in too when I got divorced to get by. 

I really, truly never saw this coming. Never would imagine that I would be here.

I’m not going to say he doesn’t understand anything. But I can’t explain it to him, he won’t understand it. It is something that is going to be an adjustment for him. But usually, he gets past the adjustment. 

He won’t understand it. So, there’s no way I can prepare him except these small exposures. It’s kind of a test period right now.

I do think that if he had more cognitive functioning, I don’t even know if I could do this. Which is a weird thing to say. 

I think that there’s so much shame when parents have to do this. On Facebook, nobody talks about their kid in a home, and they have to go visit them.

I used to be one of those judgmental people: “You put your kid in a home when they were still a kid?” I used to be one of those people.

It’s already super difficult, and to be shamed, it’s not a good place. You can’t really judge someone else until you’re in their shoes.

What I’m reading this week

A round-up of news for parents of disabled children.

• From The New York Times:  Americans’ Medical Debts Are Bigger Than Was Known, Totaling $140 Billion

The $140 billion in debt does not count all medical bills owed to health care providers, because it measures only debts that have been sold to collections agencies. The increasing number of lawsuits that hospitals file against patients to collect debt, which can lead to legal fees or wage garnishments, are not included in the figure. Nor are the medical bills that patients pay with credit cards or have on long-term payment plans. Some of the difference between the new estimate and the older, smaller one may reflect differences in how different credit rating agencies categorize debts.

The new paper does not include data during the coronavirus pandemic, which is not yet available.

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