In Her Words: Jennifer Murphy

A mom of two disabled kids describes the roller coaster her life has become — and why she loves her kids exactly as they are

This is the second piece of In Her Words, an occasional series. Read the first interview here. Interviews have been edited for length and clarity but are in the interviewee’s original words. Please see our note on language here

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We met working at a place called Umpqua Homes for the Handicapped. I was a Med Tech and he was a Med Tech and Dietician.

We both had a heart for special needs. I told him one day — we were working with twins with autism; they were just the sweetest twins — I told my husband one day: “It would be so nice to adopt a child with special needs.”

He said: “Oh, that’s a lot though. Let’s just leave that at work.”

*

We got pregnant with Preston pretty quickly. We were married in July, and I was pregnant with Preston in October.

Everything was going really well with the pregnancy. We were really excited and just doin’ everything right, you know?

Things changed at the sex ultrasound. The room got really quiet, and they went out and got the doctor immediately.

I just got the sense that something was really wrong. But I could hear his heart beating.

We live in a rural area, so it wasn’t a specialty OB, it was just the regular OB. She said there were some abnormalities with baby’s heart and she would send us up to Eugene for genetics and formal testing.

That was Valentine’s Day.

We walked out of there really hopeful. But then everything started. Everything got really stressful.

They did more ultrasounds — they could see the kidneys had extra fluid and the facial features were consistent with Down syndrome. In his heart, he was missing the canal wall between the top two chambers. We would definitely need open-heart surgery.

The blood work was positive for Down syndrome. It was really hard meeting with the genetics counselor. She was very, very pushy and insistent on us understanding how hard it was going to be for Preston and his quality of life. 

In the end, we had to be pretty blunt that we were going to keep our baby and that we would support him no matter what.

I carried him to 37 weeks. At the 36th-week ultrasound, they said his placenta started to shrink. He quit growing and was getting smaller, so they said: “Come back in a few days and we’ll do your emergency C-section.”

At 37 weeks he was 5.5 pounds. He breathed great, had a strong latch. He was doing great.

We spent four or five days at Riverbend (Hospital in Eugene, Oregon) and we had to try feeding him with a tube on our fingers and stimulate the roof of his mouth. At that point, the worst that could happen was one of those nose tubes (for feeding). That just seemed like the worst part, at that moment. 

It turned out that he never could breastfeed. We brought him home and I had two quiet months with him that I got to enjoy him just as a mom.

But Preston was drowning in his own blood. His oxygen rates were low. We were running Lasix (heart medication) at home. He went into congestive heart failure at two months old. From two to five months, it was constant crisis. 

I just kinda went into this soldier mode. I never cried. I just had to stay strong for him. 

At five months old, he just couldn’t take it anymore. His whole body was swollen. They were trying to get him as big as they could ’cause your heart’s only the size of your fist so working on a newborn…

It was 11/12/13. I’ll never forget it. Our whole family was there; everyone was so supportive.

I had to understand that his heart was going to be actually stopped (for the surgery). I was trying to understand. We went to the Ronald McDonald house that night. There was skin cleaning, and we had to stop fluids, and check in at six o’ clock in the morning. 

We just didn’t even know what we were up against.

His surgery was six hours long. We would get pages throughout the surgery. I just remember our whole family wanted to get something to eat and I didn’t want to leave. They kept saying c’mon, we’ll just be gone a minute, c’mon. Just as I got in the elevator, I felt my knees go out beneath me, just jelly legs. 

Finally, it was time to get to see him and they warned me that it was going to be a lot. 

They took me down to the PICU. Then, I just went past him. I couldn’t look at him. I just stayed there for a while and absorbed the smells, you know.

They said he had a collapsed lung from his surgery. That would mean extra problems for healing. So, they had to start this horrible therapy. We had to go out of the room…

They had to beat him and he had just had open heart surgery. I remember he had the weakest cry. He was just a newborn. 

It was a really hard time. Really hard. But every day we were there.

They had to break his sternum to get to his heart. So, we had to learn how to scoop him — there was no lifting him under his arms. But when we would hold him, he would do better, you know?

We never left him. We just stayed there the whole time, slept there, I would pump milk there.

It was a good repair. They can’t make it perfect, but they can do pretty good on it. It’s been holding steady. It’s been doing really good. We go up every September. They are miracle workers up there at Doernbecher’s. The surgeon, he enjoys doing this.

Each day got easier. I still never cried. I just kept going, just loving him.

But at about six months old he developed a food protein intolerance, which means if he eats the wrong thing he vomits to lethargy.

That’s one of his five autoimmune diseases.

He has his own counter in the kitchen. Everything is sanitized. If he gets the wrong food, it affects his labs for six months. One time a suppository did it to him. It had palm oil and he bled internally for two days. 

He can’t eat beef, soy, all dairy. He’s also got celiac, so all gluten. No pea protein, no sweet potatoes. One Thanksgiving, we thought potatoes were potatoes, and they’re not. Two hours later, we’re in the hospital.

It’s awful. His day’s going great and then — boom. 

He also takes medication for colitis. He’s deaf in his left ear — I think that’s really affected his speech. They said a hearing aide won’t work — he was born with missing parts in his ear. He does pretty well localizing, but he has so much sensory that he won’t wear a hat or anything.

He doesn’t walk. We hoped that he would be able to, but he just can’t. He’s got really low (muscle) tone. In the community, he relies on his wheelchair stroller. For feeding, he can’t sit in a chair. He doesn’t have any hair. He had alopecia. His little body just attacks itself.

He has a lot going on, but he is the happiest child ever. He’s just an angel. He is. There’s not a mean bone in him. He’s so beautiful. He knows it, too. He understands more than he gets credit for. 

With the COVID, and all that, everything was hard before, but that really made it hard. He loves school. He loves dogs. He just turned 8. He loves Elmo, Sesame Street, Veggie Tales, the movie Sing. 

He’s really just the light. Any sadness you have or anything, if you just sit with Preston, it just goes away.

He’s a perfect kid, he really is.

*

Now with Parker, I knew I was pregnant before a test would even read it.

We knew we wanted one more to give Preston a sibling. His nursery was all set up with sailboats. We were so excited for him to come.

I carried Parker to 39 weeks and had a second C-section since he wasn’t coming on his own. And I knew I wanted my tubes tied, I was done having kiddos, so I said: “Let’s just do it all at once.”

A friend from grade school ended up being my nurse. My husband was supposed to be there, but I got really unstable.

I remember hearing: “Mom’s crashing, get baby out now.” I just remember talking to God saying: “I’ve got two kids now, I gotta make it home.”

Then I heard Parker cry and it was a really strong cry.

He was beautiful. He was just perfect and his color was amazing. The second I saw him, we just locked eyes and stared. They’re sewing me back up and I just looked at him.

My friend said: “Wow, you had me nervous there for a moment. I was praying.”

I did have some post-partum (depression) with Parker. I had to go to the doctor and tell him I couldn’t sleep; I was really sad. I told the doctor immediately. They had to put me on some antidepressants for six months, Prozac, so I couldn’t breastfeed Parker, which was really hard for me.

Everything else with Parker was so normal: Parker mowing down four ounces and Preston still couldn’t hardly do that. 

It felt like he completed our family. Perfect family of four. Things were just really great.

*

It was around 12 or 15 months, I was pretty certain he had autism.

He could say his whole alphabet — backwards, count in Spanish, but he couldn’t look at you. Couldn’t tell you what he wanted or make eye contact. He would run to his room and I would try to do the natural thing, you know, cradle him and try to get him kisses, but that would just make it worse for him.

So, I had to learn to back off and do what he needed me to do, which was headphones and joint compressions and brushing. Oh, and his blanket. It was like a crisis for him if he didn’t have it!

He was about 3 when he got his actual diagnosis of autism spectrum disorder. We already knew it. It was just to get services. It was holding him back to not have the diagnosis.

He’s now 5 and, gosh, I would never second-guess the autism thing ever again. It’s such a beautiful world. When you accept the diagnosis and stop trying to fight it and get to his level, it’s easy. 

Like: once he places something, it has to stay there. He’s a perfectionist. He knows if you move things. You just can’t miss his talent. He holds you accountable to remember everything. You do something one time and that’s the way it’s supposed to be every time. He also likes to be informed. He really needs to be explained as to what you’re doing.

He needs to have his needs met. And I’m always their voice. I’m always talking out loud.

He went to preschool and that was a good year for him. And then COVID hit that March.

School didn’t start for him this year because of the COVID. COVID was still going around pretty bad here.

Then, in February, I noticed some weight loss. We were doing virtual appointments, so I did the measurements. He shot up in height a good couple inches. But he was screaming for water all the time. I was having to change him all the time. I was changing his bed daily, it was wet all the way through.

That next week, he started vomiting and holding his belly button. He’s my healthy kiddo; a temperature is a major deal; he doesn’t get sick. I was like: “How the heck am I going to take him into the emergency room?”

We were helicoptered up on Valentine’s Day. Patrick was scrambling for things that Parker had to have: his elephant, his blanket, two iPads with his videos.

Patrick only had 25 minutes to get to us before we took off. But he made it.

The helicopter took off but the weather changed in the air and there were ice chunks. The ambulance was hydroplaning in ice on the freeway at 3 a.m., trying to get a kid to the ICU.

Turns out Parker has Type 1 diabetes — another autoimmune disorder. His pancreas is done. His body attacked it. 

So that first day, I cried. And I cried, and I cried, and I cried. I cried really hard. And then I got educated and I just said: “enough.” 

Now we give him injections six times a day.

It’s serious, you have to do a mathematical calculation for everything that he eats. His body does different patterns at different times of the day. I can’t just let anyone take care of him. It took three 12-hour days to get trained how to take care of my son. I wake through the night to check on his glucose monitor. I wake to pop a milk cup in his mouth.

Parker had no way of understanding that he has diabetes, so I really needed to do this social story (an explanation with pictures) to do his insulin. I had to do his insulin no matter what. So, we count down. We tell him, “I did it!” and that he’s the super kid. He has control over where the injection goes.

To replace his blood glucose monitor, that’s a process for a child that’s autistic. It’s painful to take off and something that he wants on. So, I have this process with coconut oil and dinosaur patches. When we take it off, we all roar as a family. So, we make it fun where we can.

*

It’s a big deal. Diabetes is forever. But I can’t just sit around. I play with them and teach them.

There’s only so much of me. How much can I do and enjoy? 

I’m always checking Parker’s numbers and making sure they’re doing OK through the night.

And poor Patrick, he never gets a break. He’s either at work or he’s at work.

The most break is grocery shopping. Trying to fit in something you want to do for yourself, like, oh my God, that’s way last.

We have over 600 (in-home caregiver) hours between both the boys and we cannot find anyone. We’re posting through social media and we just can’t find people right now for any job. I’m having a hard time trying to find the right person to explain my children’s needs and with multiple children, you know?

We need to be able to be paid (to care) for our children. Because I do it 24 hours a day. Every day. I’m literally going from child to child all day long. Full diapers. Full assistance. All day, every day. I run their IEPs (for school) and their IFSPs (for social services). With Parker becoming medical like this, there’s a LOT more protocols and things. And that all falls on me, you know? 

I can’t tell you how many things are going on in my head for these kids. And I’ll do it all day long for the rest of my life. But it’s not right that I’m not able to do it with help. Or that I have to hire strangers to come in my house.

We had two 19-year-olds one time. Roommates. They would go out and vape in their car on lunch breaks. It was upsetting Parker really bad; he doesn’t like people coming and going. They couldn’t understand that.

They quit on day 2.

*

I could never take my kids anywhere alone. Parker’s an eloper and Preston can’t walk, he’s in a wheelchair. Preston could choke or need my help at any given time. I have to be five steps ahead. With everything. With Parker’s safety. With Preston’s food. But this is our life. And I’m loving it and I’m enjoying it and I love my husband.

And the state could make it easier on me. It would give the children a better quality of life. More opportunities, you know?

I can’t help but think that if they would allow certain things — if Oregon would close some of these cracks — it would help someone else going through this same type of life right after me.

It’s all nurse work. Give one unit per 10 carbs ate at breakfast — you have to read the label, add it all up, look at his blood sugar. I’m supposed to be doing this. The (paid caregivers) have to have orders written out, but it changes all the time. And they aren’t allowed to give injections. But I can’t just have it where it’s me and my husband getting the paid hours.

Every day, I’m fighting and advocating, and I’m going through the trauma of it all, right? I’m only five months in.

For each small little piece, there’s too many, there’s so many people to talk to for everything. It’s just not easy. They don’t make it easy to manage any of this.

Knowing what I know now about all of this, do I regret not aborting Preston? No, as a matter of fact, I would do it over again. 

Moms really need to have the choice. I’ve never felt regret. I would want him every day of the year. I just love him. However long God gives me with him, I want every bit of it, with both of them.


Medical Motherhood’s news roundup

• From the American Academy of Pediatrics: American Academy of Pediatrics Cautions Against Off-Label Use of COVID-19 Vaccines in Children Under 12

The AAP has called on FDA to work aggressively to authorize a vaccine for ages 11 and younger. The Delta variant is spreading rapidly among unvaccinated people, including children. In the week ending Aug. 19, the AAP reports 180,000 new cases of COVID-19 among children and adolescents. …Increasing vaccination rates among all who are eligible now is important to protect children while the trials in younger children are underway, said Dr. Beers.

• From Disability Scoop: Disney Making Changes To Disability Access At Theme Parks

…with the changes rolling out this fall, Disney says that people will be able to enroll up to 30 days before their arrival through a live video chat with a cast member. At that time, individuals will also be able to select two experiences per day through the DAS Advance planning option and they will get a one-hour return window for those activities on the day of their visit.

• From New York Times: Nothing Could Prepare Me for Watching My Wife Slip Away

Admittedly, transitioning from being with an N.F.L. franchise to full-time caregiver wasn’t easy. It’s still not easy. The playbook is either changing by the minute or so numbingly repetitious, you lose track of time and self.

The first year I was home was frustrating. Judy had always taken care of everything at the house, and I had always thrived on the structure of football. That was gone, and I was lousy at my new job. I would constantly tell myself, “I shouldn’t be here.” But now, even though I am still lousy at being at home, I know there is no other place I could ever be.

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