Welcome to the adventures of the Galacto Girls and the Dairy Queen. Wondering what this is all about? Listen in as Consumers Energy’s Jodie Solari explains the rare disease that her daughters have and how it has impacted her family.
Bill Krieger: Hello, everyone. Welcome to “Me You Us,” a wellbeing podcast. It’s another wellbeing Wednesday here at Consumers Energy. I’m your host, Bill Krieger.
Today my guest is Jodie Solari. She is a communications consultant here at Consumers Energy. Jodie, if you’d introduce yourself, we’ll get the conversation started.
Jodie Solari: Hi, Bill. Thanks for having me today. As you said, I’m a communications consultant. I have worked at CE for 15 years now. Fun fact, I started in the call center, which I maintain is one of the hardest jobs in the company. My team leader was Bill’s wife, Alexis.
Bill: [laughs] Oh, well that is a fun fact.
Jodie: Yeah. She had to deal with me in the call center for a few months there before I moved on to a communications position in Jackson.
Bill: I talked to people a lot who start out in the call center. It seems like there’s three places. People starting at the call center, as a meter reader, or as an intern of all things. I remember back in the day here, people talk about the call center.
I know it’s not like this now, but I always pictured like you know those movies where you got a bunch of people rowing in the bottom of the boat? The guy is beating the dream. That’s how I picture working in the call center.
Jodie: That’s a little how it felt.
Jodie: It was very regulated. You weren’t up away from your desk for very long and it was just very much call after call. I think it’s a lot different now and I’m glad to hear that a little more relax. Of course, so many people working remotely in the last couple of years.
It was a memorable start. I learn a lot of background for the company, but it’s a tough job, the things that come in and out on a daily basis. It’s tough work. I commend all those people especially the ones that make that their career.
For me, I was there a few months and then I move on. It was a great place to start.
Bill: Yes. Let’s talk about that for a second. Some of our listeners might not know what a communications consultant does. How do you make a living?
Jodie: To be honest, that title has carried me through a couple of different positions. It’s pretty all encompassing of all things communications. After I left the call center, I started in working on a project that when we’re implementing SAP, and so I was on the communications team for that.
I know some people that work at the company, they’re probably racking under their desks right now with the memory of that. I will move on.
Then after that, I went to another communications role, did social media for a little bit and then spent several years doing internal communications for the company. Then just a couple of years ago now, went back to social media.
Now, I am helping with our day?to?day social media and specifically managing our blog.
For those that don’t know, we have a company blog that can be found at force4michigan.com. Another fun fact, you can find the Me You Us podcast on that blog. If you haven’t checked it out, I encourage everybody to do so.
Bill: Yes and I’ve worked with Jodie and her team to begin providing transcripts for the podcast now. I think almost every episode this year now has a transcript that goes along with it. For the folks who want to enjoy the podcast but can’t quite hear it for whatever reason, you can check it out using those transcripts.
Lots of thanks to Jodie and that team for helping make that happen. That makes an important step for the podcast. Thank you for that.
Jodie: Of course, we enjoy it.
Bill: 15 years at Consumers Energy and working in communications, I know our paths crossed quite a bit over the last few years, especially with some of the work that we’re doing in DE&I, but you’re also a mom with a cause.
Let’s talk a little bit about your family. You have three children?
Jodie: I do. I have an eight?year?old named Francesca, and I have four?year?old twins, Amelia and Annabelle.
Bill: How cute. You must be very busy with twins. You’re the second person today that I’ve talked to that has twins by the way.
Jodie: There’s always something going on. I will say I had interesting weekend where not only was it my three girls, but my friends from California were in with their two sets of twins four and under. You heard that right. We had six children four and under at our house with my eight?year?old who was like, “What am I going to do with all these little kids?”
It was a blast. We had a great weekend and actually will admit I am missing the noise. I was sitting there the other night I’m like, “It is too quiet here with all of them gone.” It’s not that quiet. My three are still there, but it was a whole different dynamic with all of them.
Bill: I can only imagine. I’m a grandfather now. I know I don’t look old enough to be a grandfather, but I am. [laughs]
Jodie: Not at all.
Bill: I am. My four?year?old granddaughter was visiting a few weeks ago, and they stayed for about a week. When my son and his family left, my wife and I sat on…It was a Saturday, we sat on the couch and we didn’t get up. We had tickets to the football game, and all sorts of, we didn’t even get off the couch.
Jodie: Needed to relax for a little bit.
Bill: Yes, we were exhausted. How did I do with three kids? I don’t know what happened.
Jodie: Time, age.
Bill: [laughs] I’ve lost my stamina when it comes to having kids running around the house. You have some nicknames for your children. We were talking about that before we started the podcast. We have the Galacto Girls and the Dairy Queen. Let’s talk a little bit about what that means.
Jodie: Sure. Two of my daughters, Francesca, my eldest, and then one of the twins, Amelia, have a rare disease, which is called galactosemia. For many of you, I’m sure that that’s the first time hearing that. You’re like, “Galacto?what?” Which was very much like I felt the first time I heard it.
My Galacto Girls are the ones with the galactosemia. Annabelle, the twin that doesn’t, is our Dairy Queen. She can have all of the dairy things. With galactosemia, there’s no treatment right now. The only management tactic is controlling the diet, which is not having galactose, which is most commonly found in dairy.
It’s found in some other products as well, but dairy is the big one and where it’s found in the biggest amount. The only treatment option we have right now is for our girls not to consume dairy. Even with that, we still might see some side effects, some complications, because their bodies produce galactose.
For you and I, we produce galactose, and then our bodies metabolize it, create glucose, create energy. For my kids, it’s pretty much exactly opposite. They can’t metabolize it. It sits in their body, it acts as a poison, and can cause some long?term complications.
Bill: Let’s break it down a little bit more. Galactosemia, I’m getting that milk is a problem in there. What was it like? You had your daughter, and what was it like having a child that has galactosemia before you knew that that’s what they had?
Jodie: It was three short but very long days before we knew what it was thanks to the newborn screen. Because galactosemia can be deadly and babies were dying before it was added to the newborn screen. It is finally mandated to be on all 50 states, newborn screens. That wasn’t always the case but it has been that way for a while.
Francesca was born. It started with some oxygen issues. We weren’t able to do skin?to?skin, then it was some white blood cell counts, then it was bilirubin. It was just one thing after another.
We’d get one thing figured out and something else was wrong. It was frustrating. Really scary. I remember at one point saying to my sister, “I’m not sure we’re ever going to bring her home.” That makes you tear up just remembering.
Bill: That’s a really scary thought.
Jodie: She just said, “We’ll just enjoy every moment you have. Just soak it in, pray,” and we did as we’re trying to figure out what’s going on. Three days later, I’d actually taken her to my hospital room. She’d been in a special care nursery, which they no longer have, but it was a program they had at Sparrow at the time. It was a step down from NICU.
She was on the nursery under the lights for bilirubin. I take her back to my room, my husband had stepped out so it’s just her and I, I breastfeed her for the first time. She hadn’t been eating so they had been doing gavage feeding. They would put a tube down her throat, and she was not handling that well.
I take her back, I breastfeed her. We have a good 30 minutes because she had to get back into the light, so I rushed her back to the nursery, and the doctor’s on the phone. “Jody Francesca is OK, but stop breastfeeding immediately. She can’t have dairy. She has something called galactosemia.”
That was where our journey began.
Bill: I want to make sure I understand this. Even with breast milk, there’s galactose in that as well?
Jodie: There is, yeah.
Bill: Wow, now that’s…Wow, I’m speechless.
Jodie: I don’t want to get this wrong and I don’t have time to google, but I believe I want to say it’s a seal, there’s one mammal in which their breast milk is not dairy. But humans, we definitely have galactose dairy in the breast milk.
Day three after having that experience, he said, “Stop.” That was my understanding at that point. He made me…It was like, “It’s OK. It’s a dietary change which is going to be fine.”
Bill: It did seem like a big deal although it’s a big name.
Jodie: Yeah, it is a big, scary name. Of course, we did what all parents do or anyone does with a new diagnosis that they’ve never heard of. You start googling. We found some really scary stuff because you find worst case scenario. I think with galactosemia is it’s an orphan disease. It’s a rare disease.
There’s not any government?funded research on it. The big companies aren’t interested in it, the drug companies, because it doesn’t impact that many people. It’s not a money maker. There’s not a lot of research.
The things I was finding were very out of date. I was finding dietary restrictions. I was finding these worst case scenarios of brain damage and not being able to live on their own. All of these really scary things.
To be honest, the truth was somewhere in the middle. It wasn’t just the dietary change. Because like I mentioned before, her body, their bodies produce galactose that cannot be broken down even with dietary management. There still can be some long?term complications. It seems to specifically impact eyes so cataracts can happen.
Brain damage, liver and kidney. For girls, the reproductive system. That’s where the damage seems to happen with galactosemia, but it can take years because it’s building up in the body. The body is not breaking it down.
Although they might be doing great now, as it builds up, as they get older, we might still see some delays or some side effects, some tremors or something that can be a challenge. Speech delays, which we have not seen.
Pretty much the opposite with our two, which I’m grateful for it. I remind myself that when they don’t stop talking.
Bill: Right. When you’re tempted to tell them to shut up.
Jodie: [laughs] Yes. Silence is golden.
Bill: [laughs] Maybe not in this case.
Jodie: Exactly. I remind myself like, “Oh, I’m glad she can talk.” She talks so well. It was a scary diagnosis and it’s one that we’re still learning about because again, it’s a rare disease and there’s not a lot of research.
I decided that I needed to be part of the solution. I was going to be a mom with a cause. I love to write. Soon after Francesca was born, I started a blog. Then I started a Facebook page that follows our journey. I knew I was going to do some fund raising so I want people to build a follow along there.
I want to bring awareness to this really scary names so that there’s other people that aren’t so scared when they hear this and going right to the worst case scenario. We might have some challenges, but it’s going to be OK. It’s manageable.
We have information. There’s more information now than there, even whilst when Francesca was born. When Amelia was born, with the twins, we know the possibility. It’s a genetic condition. My husband and I are both carriers. We passed it down, yay, us. [laughs]
Bill: Here’s a little bit of parent guilt for you. [laughs]
Jodie: You got it. We passed both non?working copies down to Francesca. With the twins, we knew that there’s 75 percent chance that they wouldn’t have it because they would either get a working copy and a non?working copy or two working copies or 25 percent chance to non?working.
Amelia got the short end of the stick, I guess. She got two non?working copies. Annie, we don’t know yet. We will have her tested probably around child?bearing age. It’s something that might be interested to know with her partner. She could be a carrier or she could have two working genes and that is as scientific as I can get.
The twins, we put them right on soy formula until we got the newborn screen back. Again, day three was the magic number for us. Before them though, Amelia presented just like Francesca, all the same things.
The chest haziness, the oxygen problems, the bilirubin. I told my mom, “Mom, I think if we have another galacto girl, I know who it’s going to be.” Sure enough, results come in, Amelia has galactosemia. Annabelle does not.
Bill: Before those test results come in though, you have to be very careful that first few days in the hospital.
Jodie: Soy formula for both of them. Annabelle was doing great from day one so she was never in a nursery or anything like that. She was with us. Amelia, because of the issues that she was having was in the NICU. They were feeding her soy there. I was feeding Annabelle soy in the hospital room until we got those results.
Bill: If I want to check out your blog or your Facebook page, where would I…I know I would go to Facebook, but where would I go on Facebook?
Jodie: Our Facebook page is Adventures of Galacto Girl (https://www.facebook.com/AdventuresofGalactoGirl) and then the blog is…I always get this wrong because I call her galacto girl so much, but when I first named the blog, it’s actually galactosemia girls. G?A?L?A?C?T?O?S?E?M?I?A G?I?R?L.blogspot.com. (galactosemiagirl.blogspot.com)
Bill: If you really want to get that, go back so I’m not going to try and repeat it. [laughs]
Jodie: No, don’t. For sure, that.
Bill: I have checked out the blog. There’s great stuff out there, great stuff on the Facebook page. How did you really educate yourself though? I’m assuming there’s not like a support group for this, right?
Jodie: There is, in a sense. It’s called the Galactosemia Foundation. Interestingly enough, I found it while I was doing that terrifying, googling on day three when we got the diagnosis for Francesca. I’m reading through things and my husband is finding things and reading them. We’re both doing this.
I said, “Chris, there’s a conference for this and it’s happening right now in Florida.” Right then, we thought this will be a cool thing to do every other year. It happens every two years. Her birthday, and you go and meet other kids that have it. Their parents, talk to researchers who had to laid this research.
We knew right then but it was just funny to find as we’re googling. It’s rare to us. We’ve never heard of it. There’s a conference so somebody knows something about it. We need to find those people. We did.
We went to the conference. I started helping with the Galactosemia Foundation. They have, at the time, and still do had newsletter that they put out twice a year. In true Jodie fashion, I really like to review things and edit them…
Bill: Hold on for a second because I know this for a fact. I don’t want to sidetrack us here, but people got to know this about you. It’s really important. I would spend hours going through this transcripts where I had to do them by hand. I would be proud of myself.
I come out of my office sweating and thinking, “Oh, I’m there.” I would send it and Jodie would be like, “Oh, well, I found this, this, and this. You might want to think about that and…” Yes, she is very technical when it comes to that. Anyway.
Jodie: I do have a journalism major so I like to say it’s an occupational hazard. [laughs]
Bill: Be careful when you send Jodie an email because you’ll get an answer and maybe an answer you weren’t looking for.
Jodie: Maybe some type ins, some corrected typos. What can I say?
Bill: All right. [laughs]
Jodie: I, in true Jodie fashion, said “Hey, I’d love to help with your newsletter.” I got linked up a little bit with that. That was in 2016. I did that for a couple of years. Well, two years. 2018 with the Denver Conference. The twins had just been born. It was tough. We left them at home with grandma, grandpa and my sister.
Because we thought, “What a cool thing just to do for Francesca.” She’s new to the sister thing, and it’s been all about these twins and we’ll take her. We went to Denver to the conference. That’s where I said I want a bigger role. I want to be part of the board.
I applied to be part of the board. I am now, since 2018, the media and communications chair, I think, is the technical name. I now put together the newsletter and send that out. I manage our social media channels. I handle our website.
We just did a big redesign on that so I’m really excited about that. All those communication things that I’m passionate about. That was my step one of I need to get involved. I don’t want anyone else to feel like I did on day one.
I want to be part of the solution. I’m that mom with a cause. Now, you’re going to hear me talk about… [laughs] You’d like to see me away more than you probably want to, but it’s rare, but it happens and I don’t want people to keep feeling like we felt so isolated and so scared. So afraid of the worst case scenario.
When, again, I feel like it’s a spectrum of things that kids and people can experience. I think having all of the information, understanding it all, but not convincing yourself or losing yourself in that…Well, this is what’s going to happen to my child, because it might not.
One of my blogs, I said early on, I allowed myself to grieve but I told myself I would not spend the rest of my life worrying about something that may never happen. Yeah, she might have all of the bad things. If she doesn’t, what good was wasting all my time worrying? If she does, what good was wasting all my time worrying?
I still go down that dark path every once in a while especially with the fertility stuff, knowing I had my own fertility journey with the twins and how hard that was. To know that my girls might want to be mothers and might have to endure that.
That haunts me a little bit, but I know that all the things that they could face, there’s help and there’s people that can help them. We’re on top of it and they’ll be great.
Bill: First I want to go way back to when you found this conference, which is just amazing because this is Internet a great thing. You found this conference. What was it like to get there and see all these people who were on the same journey as you were.
Sometimes we feel like the only one, or we feel a little weird but you get there and you’re not the only one, and you’re not weird at all. You’re a parent.
Jodie: It’s all the people looking for the same things and to see that you’re not alone. To look at someone or hear their journey and to hear that it turned out a lot better than you were expecting for your child, but also you see some of the worst?case scenarios because, I said that to my sister. The first one was a little jarring for me because there were some people with significant delays. We’re going to deal with whatever we deal with, and we’re going to love our kid and they are exactly who God wanted them to be and I fully understand that.
Just knowing that they could have these struggles and seeing so much of that was a little scary. Then I realized that the people that come to the conferences are more of the kids with the more delays, because those are the parents that need the help and want to know what’s happening and how to help their kids and need the parental support and to hear that they’re not alone.
I think it was a little jarring at first, and then meeting some of these kids and falling in love with them. I don’t know that I did that so much at the first one, I was so overwhelmed. Francesca was two and running around like a crazy person. It was hard to take it in and it was so overwhelming.
By Denver, when I was able to sit down at a table and then be that person for two women that are now good friends of mine. One is actually our [laughs] vice president of the Galactosemia Foundation now, but she was at her first conference with a six?month?old baby, like, what should I expect?
Another one, Emilie, at our table was the same, had a little one. I was able to be that person for them and to say, “It’s going to be OK. It might not be easy, but you’re in the right place. You have support.” Being able to be that person and even it happened again. We went virtual in 2020, so we didn’t have it in person, but we were back in person 2022 in Orlando.
Now, even with my role as the board, I’m planning the conference and working with the researchers and the doctors and the presentations and setting up the breakout sessions and really meeting more people in that way and getting a lot more questions and being able to be that support role for people in a bigger way has meant a lot.
Bill: The good side of the Internet got you to there. When you talk about going down that dark path, I think about all the information that’s out there on the Internet, you have to be very, very careful. Here’s the thing. To me, this is interesting, is that I remember, as a kid, watching “The Brady Bunch.”
I remember Bobby Brady had all these symptoms. He looked them up in the encyclopedia because there was no Google. His hand hurt. He thought it was because he was catching a baseball with no glove on. He managed to come out to this rare and deadly disease. He thought for sure he had it.
I don’t mean to make light of. So often, we can do that in our own lives when we get on the Internet. I’m interested in finding out more about this. Are there places that I should probably go and look at it, rather than just hit Google and hope for the best?
Jodie: Yes. Of course, now, it’s partially self?serving because I am on the Galactosemia Foundation. That was the resource for me. That was the one where it had the most updated diet information. Diet has changed over the years because research, although slow, [laughs] and not a lot is happening.
There were things that were restricted before Francesca was born. That even by the time she was born, I got a booklet printed out that was out of date because they’d done more testing. “Oh, these things are OK because the level of galactose is so small.”
Anyway, I went to the Galactosemia Foundation website, galactosemia.org. There’s a list of all the current, today, things that are safe, because it’s changed. Because research has proved something safe. It has a list of things to watch out for. Delays, complications. That’s where I went.
That was my place of truth, which is what made me, again, want to be part of it, support that cause, and make sure more people knew about it. That they didn’t just have to Google it on their own.
As part of the foundation we’re working on, what can we do to start talking to all of the different genetic clinics and give them information about us? So that day one, somebody comes in, first appointment, so overwhelmed. They don’t have to go Google to try to find us. The clinic can say, “Hey, here’s the Galactosemia Foundation. Reach out to them. They have support.”
That was my source of truth. There are other things because we’re a rare disease, we’re part of NORD.
Bill: What exactly is NORD?
Jodie: NORD is the National Organization for Rare Disorders. It’s a 501(c)(3). It’s a nonprofit. It just helps with the patient advocacy side of rare diseases. Like I mentioned before, we don’t get governmental funding. There’s not a lot of awareness. There’s not a lot of people paying attention.
NORD is the umbrella entity that takes in all those rare diseases, helps advocate, and steps up to support the rare disease organizations.
Bill: It’s so good to know that that’s out there as well. Probably a great source of information for folks. Again, if you’re looking for good information, make sure you’re getting it from a trusted, respected resource. You talked earlier too about how our bodies naturally create galactose.
Now, I’m thinking that when they do the testing, it’s a genetic marker that they test for to see if you have the disease.
Jodie: It’s a heel prick. Yep. They take some blood and then they test for…I forget how many different disorders. It’s on day one or two of life. They do a little heel prick, take blood, and then test that for these host of usually rare diseases. Deadly rare diseases that if they’re not treated, could be fatal.
Bill: Later on in life, though, is there a way to test to see how much galactose the body’s retaining? Does that make sense?
Jodie: Yeah. Interesting. Yes. It does. Every year now, my girls go and get tested. They call it the gal?1?p. It’s the level of galactose in their blood, essentially. This is the fun thing of a rare disease. I say that with a little sarcasm. It’s not fun. It’s frustrating.
In the beginning, it was like, “How are we going to know how bad this is going to be?” They’re like, “Well, you don’t really. We want the gal?1?p levels to be under four. That’s what we’re aiming for. But there are kids that have gal?1?p levels under four with a host of issues and people with a higher than four that don’t have any.”
I’m like, “OK. Helpful.” That’s what they have. Again, limited research. This is what they have. It’s the gal?1?p. It seems to fit. Both of my girls right now I think are two. Their level is about 2. They get tested every year.
Some doctors feel that there’s not really you can do anything to change that number, so why even check it? Some doctors don’t check for it, but ours does. When Francesca was born, it was at like a 60 and went up after having the breast milk and dairy formula, it went up to 85 after. Was the highest that it was tested at, so it may have been higher than that but when the level was done and they wanted under four. That was very high. Now with Amelia, she never had any dairy, so hers never got that high. Started out, the first time we got a level was a few months after she was born and it was only a 3.7.
That’s as high as hers ever went, where Francesca’s was 80 because of the dairy consumption.
Bill: It’s just dangerous for them, do they have physical symptoms if they’ve had too much dairy or too much galactose in their systems?
Jodie: Nope, not from our experience. Now, from other members of the community, you hear varied things, but you wonder if that’s even is that the galactosemia or a lactose or thing because their body is not used to having it. Francesca did accidentally have real ice cream, dairy filled ice cream, her last day of three?year?old preschool, and she was fine.
In fact, so fine that I never told her. She might know now, but I didn’t want her to know she had it because then it was like, “Why is this dangerous for me? I ate that and I was fine.” That’s the thing with galactosemia, it’s not an anaphylactic peanut allergy. It’s not if they touch it, if they have a little bit.
They can have some accidentally every once in a while and they’re probably going to be OK. The problem is, as they keep having it, if they were to go off diet, it builds up, it adds to that androgynous production that their body is making and that it can increase levels. It can cause the brain damage, it can cause organ failure, it can cause cataracts.
It’s very important for them to stay on diet. When we realized she had had it and didn’t have any effects, we were obviously thankful. Also we’re like, “Oh, we can’t let her know” [laughs] because we don’t want her to know, she doesn’t have a fear thing then or something’s wrong. If she feels fine, why wouldn’t she do it again?
She is our little rule follower, though. She was the one very early on was very much even at like three, is this safe for me? She was sorting her Halloween candy into what was safe and what wasn’t.
I had one of the school administrators call and said, well I realized I hadn’t filled out a snack form, so I usually cross off things they can’t have and then they’ll take something from the safe bucket or whatever at school. I called her and said, “Wait, they’re having snack.”
She came back and called me right back. She said, “Oh, you have one smart girl.” I said, “What happened?” She’s three years old at this point. It might have been four?year?old preschool. Either way, she was young preschool and they had a substitute and she tried to hand her SunChips, the Cheddar SunChips.
Now, the original SunChips safe, but the Cheddar, Harvard Cheddar whatever they are, not safe. She tried to give them to Francesca and Francesca looked at her and she said, “I can’t have these, they aren’t safe for me.”
Bill: Wow, what a smart kid.
Jodie: Then there’s Amelia, who I came into my bedroom one day and watched her shoving stuff in her mouth. I panicked like, “What did I leave out?” Thankfully, it was chewy sprees, so other than choking, they were safe. I said, “Amelia, those might not have been safe for you.” Honey badger does not care.
Jodie: Where Francesca is, she’s trying to teach her sister. Very older sibling firstborn responsible. I think Amelia is going to be a little bit more of a challenge for us.
Bill: It’s funny that you say that. I think about my nieces. I have a niece who has celiac, so she can’t have gluten, and my other niece can eat whatever she wants. The funny thing is, it’s not the niece that has the celiacs that pays attention to everything, it’s the niece that doesn’t and she’s the younger one.
Bill: Sarah, she will make sure that things are correctly. She comes to our house and they’re staying for the weekend. She’s very much on with that. I love it because she’s taking care of her mom and her sister.
It’s amazing, but it’s interesting because Penny, my niece that has celiacs she cares because she gets the effects of it, but she’s not as in tune to it as her younger sister. It’s funny that your kids are the same way. When you said that, I picture this little girl sitting on a bed stuff on her face.
Jodie: It’s exactly what it was but I was terrified. I was like, “What is she eating?” I’m like, “What would I have left?” Chewy sprees.
Bill: Do you think she was doing it before you got there? She was thinking, “I better get this done before mom shows up?”
Jodie: Oh, yeah, absolutely. No total reckless abandonment. She was going to town before she was getting in trouble. Thinking, “It was just candy. Mom’s going to tell me no candy,” not thinking in her little brain, “This might not be safe for me.”
Even this summer, was funny. We were down at our neighbors and we have a group of us in our amazing neighborhood that I’ll get together kids the same age. I came in and of course, Annabelle can have Doritos or whatever, but Amelia said something that made me think she had some Doritos spicy chips as they call them.
I said, “Amelia, honey, you didn’t have any Doritos. I don’t know.” She immediately was terrified. She’s like, “I don’t know.” I said, “Honey, those aren’t safe for you. Those have milk in them. Those have cheese, cheddar cheese.” God bless her. She said, “I asked Lila and she said they were safe for me.” Lila also four years old friends.
Like, “Oh, no, you have to ask Lila’s mom or dad. They understand.” Even these little kids are trying to understand, and we come over and they’re like, “Is this safe for them?” It was so funny. She started sobbing like she did something terribly wrong. She thought she checked and it was OK, “But Lyla said they were safe for me.”
“Lyla’s four, honey, and although she’s trying to understand your galactosemia, [laughs] she doesn’t quite get it, so you need to check with a grown up that can look at ingredients.” “OK.” She’s going to be our problem one, Francesca, not so much, but yeah, just ingredients right now is all we can do and reading lots and lots of labels.
Bill: I can tell you from experience, as they get older, that little rebellious streak doesn’t necessarily [laughs] go away.
Jodie: That’s what I’m afraid of. [laughs]
Bill: Here’s the thing, keep this in mind, that it might not be the one you think it is, because [laughs] my kids have surprised me. I would think I would never have thought that this daughter would have done that, I thought it would have been the other daughter. I’m not naming names because my daughter is listening to this. You two can figure that one out.
Jodie: They’re calling each other right now or texting each other.
Bill: Yes, or Snapchatting or whatever they do these days. Jodie, I really appreciate you coming on and we’re getting close to the end of the podcast. Before we go, though, I’m wondering, is there anything that you would like the audience to take away from our conversation today?
Jodie: Yeah. I think probably two things. First, get the newborn screening. For those having children or are going to have children or know someone having children, it’s so important.
My first conference, I’ve heard the story of a woman who had been told by someone handing out pamphlets not to get the newborn screening because the government would have your DNA and all these things that aren’t quite true. [laughs]
She didn’t and then her son got very, very sick. It took the third time of the nurse ?? her nurse in the hospital ?? if there’s born screen, I really think you should get this newborn screening and she finally did. He had galactosemia. It’s really important. Get the newborn screening. It could very literally save your child’s life like it did mine.
The second one is breast is not always best. I know that and there is not anything against breastfeeding. I think the women that breastfed are amazing. I know it’s hard. Some of us aren’t breastfeeding because we don’t want to. We can’t. Sometimes, I think there’s a little stigma around that when you don’t breastfed, they’re not doing what’s right for your baby.
People don’t necessarily understand. There’s a lot of guilt from me and grief when I got back from breastfeeding Francesca and finding out the thing that I thought was giving her life was killing her, could’ve killed her.
That was really hard for me. I know that it’s a grief that a lot of women go through. I know when people say breast is best, it’s usually met appearing with good intentions, but it really can be hurtful. I would just say the next time you hear or start to say it yourself, remember that my two girls are alive because I didn’t breastfed.
For my family and probably many out there, it’s not always best. Just understanding that different things work for different people. We don’t know the whole story. I think being a supportive of different decisions that we don’t know the reason behind is really important.
Bill: Thank you for sharing all of that and certainly we don’t know what somebody else maybe going through on that day. It’s always good to be cognizant of what we’re saying to them.
Thanks again for coming on. I look forward to hearing more about the Galacto Girls and the Dairy Queen.
Jodie: All right. Sounds great. Bill, thanks for having me.