278 – Adam Birchmeier of Muskegon, MI Whose Daughter With Angelman Syndrome, Very Sadly Passed Away In August

Transcript:

Tom Couch: [00:00:00] Special thanks to Horizon Therapeutics for sponsoring the Special Fathers Network Dad to Dad Podcast, working tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics’ mission at HorizonTherapeutics. com.

Adam Birchmeier: My only hope for my daughter, even before the Angelman syndrome diagnosis, was that she was a kind person and I think Maddie was the epitome of love. She never met a stranger that she didn’t like. She always wanted to be near Nicole and I. So on that front, I think I was a success because Maddie was… You just see a picture of her and you can just see the love and the kindness and the joy in her face. So it’s safe to say that I hit a home run with Maddie. Not trying to brag or anything like that, but she was just a kind and gentle soul.

Tom Couch: That’s our guest this week, Adam Birchmeier, a Business Sales Representative and the father of Maddie. who was born in 2020 with Angelman syndrome, [00:01:00] a rare genetic disorder. Maddie, very sadly, passed away this past August, just three years old. This week we’ll hear about Maddie’s life and how her infectious spirit lives on. That’s all on this Special Fathers Network Dad to Dad Podcast. Now say hello to our host and the founder of the Special Fathers Network, David Hirsch.

David Hirsch: Hi, and thanks for listening to the Dad to Dad Podcast, fathers mentoring fathers of children with special needs, presented by the Special Fathers Network.

Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for dads to support dads. To find out more, go to 21stCenturyDads.org.

David Hirsch: And, if you’re a dad looking for help or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to [00:02:00] Facebook.com, groups, and search “dad to dad.” Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to David@ 21stCenturyDads.org.

Tom Couch: So now, let’s listen in to this conversation between Adam Birchmeier and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Adam Birchmeier of Muskegon, Michigan, who is a Business Sales Representative with Access Health and the father of a daughter with Angelman syndrome who very sadly passed away after a brief illness in August. Adam, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Adam Birchmeier: Thanks for having me, David. I appreciate you having me on and I appreciate the platform to share Maddie’s story.

David Hirsch: You and your wife, Nicole, have been married for four years and are the proud parents of Maddie, who was born in June 2020, was diagnosed with Angelman syndrome at 18 months and who, very sadly, passed away in August, shortly after her third birthday. Adam, so sorry for your loss.

Adam Birchmeier: Thank you. [00:03:00] It’s been a… It’s been a tough road so far. I’m very fresh in my grief, but thankfully I have a partner like Nicole, somebody who balances me out. Hopefully I do the same for her. And we’re just getting through this together as a couple, as a family, and thankfully we have so many good friends, neighbors, clergymen. There’s a lot of people in our corner. and it makes it just a little bit easier. It’s a rough road, but thankfully we’re surrounded by amazing people.

David Hirsch: Yeah, thanks for sharing. One day at a time. I’m hoping that the burden of the grief of it all lightens a little bit and you can continue to put things in perspective like you have.

So let’s start with some background. Where did you grow up? Tell me something about your family.

Adam Birchmeier: So I grew up in Chesaning, Michigan, a small little town about 30 miles south of Saginaw, Michigan, just a one-stoplight town. It was a fantastic place to grow up. Everybody knew everybody. One interesting thing I think growing up [00:04:00] is both of my parents are hearing impaired. They’re deaf since birth, so I grew up speaking English as well as signing in my household. That’s always an interesting little tidbit, and opened my eyes to a whole new world, that the deaf community is a very inclusive, inviting place, and it was a great way to grow up.

David Hirsch: If I recall, you were the youngest of three, and you have two older sisters. And I’m wondering if they’re still there in Michigan, or what they’re doing as well.

Adam Birchmeier: Yeah, so both of my sisters actually live about 40 minutes away from us in Grand Rapids. My middle sister Connie, she has three young girls. My oldest sister Angela, she has one young girl. So with Maddie, obviously it was a little bit of a girl gang, if you will [both chuckling]. And it was fantastic because all of Maddie’s cousins, every time that Maddie was over, since she was the youngest, the girls would always dote on her. And you don’t always get a lot of breaks when you’re an Angelman parent, but I was able to just [00:05:00] let the girls watch Maddie and play with her and got to relax a little bit.

David Hirsch: That’s fabulous. I’m curious to know, what did your dad do for a living?

Adam Birchmeier: So my dad worked for General Motors. He actually retired at the ripe old age of 47. I don’t know if you remember the little financial hiccup that General Motors had. He took an early buyout, mostly to keep health benefits because I was still in the household.

David Hirsch: So has he had a second career since he retired, a decade or more ago?

Adam Birchmeier: No, he hasn’t. He’s enjoying watching Tigers baseball. He’s a big sports fanatic. That’s something that he instilled in me at an early age and he just took to retirement and he’s enjoying his life and I’m happy for him because working on an assembly line isn’t for everybody and it is hard work. I’m happy that he’s able to enjoy the second half of his life and get to do what he wants to do.

David Hirsch: How would you describe your relationship with your dad?

Adam Birchmeier: I think growing up, I thought my dad was [00:06:00] extremely strict, but looking back on it, he was trying to guide me as a young man. And obviously as your children grow older, your role in their lives changes. So he’s an amazing friend and somebody who I respect. I respect his opinions and just somebody who I know that if I ever needed something, I could just pick up the phone, shoot him a text message and he would be here as soon as possible.

David Hirsch: Yeah. I think that it is important to have expectations when your kids are younger, right? Guidelines, so that they’re challenging themselves. And then as you do get older, like you said, hopefully you still have an open line of communication, so that they can continue to be involved in your life. And it’s great to hear that at a moment’s notice, if you needed something large or small, that you can make the call or send a text.

Adam Birchmeier: Yeah I’m extremely lucky to have him in my life. I feel lucky that I have the relationship that I have with him. He was always there, right? So any sporting event that I had, [00:07:00] any school project, he was always there. He showed up when he probably had better things to do, but because of his love for me, he was always there for me.

David Hirsch: So are there any important takeaways when you think about your relationship with your dad? Lessons learned that you’ve tried to incorporate into your own parenting?

Adam Birchmeier: I think my dad’s philosophy is always about faith and love. Always having faith in others. Always loving somebody regardless of what happens. And that’s kinda how I raised Maddie, right? I loved her beyond words. And I always had faith that, whether it’s in God or whether it’s in her, that she would be the best person that she could be. My only hope for my daughter, even before the Angelman syndrome diagnosis, was that she was a kind person. And I think Maddie was the epitome of love. She never met a stranger that she didn’t like. She always wanted to be near Nicole and I. On that front, I think I was a success. Because Maddie [00:08:00] was… You just see a picture of her and you can just see the love and the kindness and the joy in her face. So it’s safe to say that I hit a home run with Maddie. I’m not trying to brag or anything like that. She was just a kind and gentle soul. And I would hope that I had a little bit of a part of that.

David Hirsch: Yeah I’ve seen the pictures of her. She has one of those magnetic smiles. That shiny eyes, right? That effervescent look. And you were very fortunate. Very fortunate.

So I’m thinking about other father figures, and I’m wondering what, if any, role your grandfathers played. First on your dad’s side, and then on your mom’s side.

Adam Birchmeier: I was fortunate to know both of my grandfathers. Grandfather on my mother’s side has since passed, but I was fortunate enough to get to know him. I would share a story. My grandfather on my mother’s side, he smoked cigarettes, right? And I would always ride with him up to the store. I just always remember he’d buy a pack of cigarettes and then he’d buy me a pack of candy cigarettes. [David chuckles] So that’s always a fond memory.

But [00:09:00] then my grandfather on my dad’s side, my Grandpa Birchmeier. I’m extremely close to my Grandpa Birchmeyer. I talk to him every Sunday. Every time that I’m back home I go to church with him, go out to breakfast with him, and just sit and visit. He was a huge part in Maddie’s life. He just took to Maddie and it was fun to see those two interact. And he’s somebody who I look up to, trying to be the best husband possible. My grandmother passed away in 2008. He still wears his wedding ring. She had some health issues before she passed for quite a few years and he just put his head down and he took care of her. He didn’t complain. And years later, talking to him when I’m getting ready to marry Nicole and trying to get advice, he just looked at me matter of fact, and he just said I was her husband. That’s what I was supposed to do. And it put things in perspective that commitment that you make to somebody isn’t for just [00:10:00] the good times. It’s for the difficult times. He was actually the first person that I told. I hadn’t proposed to Nicole yet, but I told my grandfather. I said, I’m going to marry this girl. And in his matter of fact way, he just looked at me and he just said, why haven’t you yet? That’s just his philosophy is, if you’re going to do something, do it. If you make a promise, if you look somebody in the eye, shake their hand, whatever the case may be, you just do it. And I’m very fortunate to have him still in my life. He’s 92 years old, and I’m very fortunate to have him as a role model.

David Hirsch: Yeah thanks for sharing. Very touching. What a blessing it is to have known both of your grandfathers, and to have one of them still around in his 90s. And it’s not lost on me that he’s not just a grandfather, but he’s a great grandfather, right? And he’s gotten to meet at least five of his great grandchildren. And you don’t want to take that for granted, right? The cycle of life doesn’t always work out that [00:11:00] way. Thanks for sharing.

Any other men who played a father figure role, positive adult male role models in your life that perhaps helped shape your character?

Adam Birchmeier: Yeah growing up, I was always with the Potter family. Now they’re men, but two boys that I grew up with, Michael and Nick. I was literally at their house all summer long. I’d go home, get a few clothes, and then go right back to their house. My first job was actually working for Mr. Potter bailing hay. I was probably 11, 12 years old. But he was just an adult figure that was a constant presence in my life. Somebody who I knew if I was in trouble, or if I just needed advice, I could always go to him. Treated me just like one of his sons, and I’m very fortunate to have him in my life. And actually, they lost their son Michael when he was 17 years old due to a car accident. Even in my adult years, they came to the prayer service, and [00:12:00] gave us two books to read, and wrote us a very beautiful letter. And he’s still a constant presence in my life. Somebody who I respect. He doesn’t have to be there for me, but he wants to be there for me. Just one of those people that, when you have them in your life, you keep them close because they’re that type of person.

David Hirsch: Yeah thanks for sharing about your friend, Mike, who is about your age sadly who passed away. It’s almost like some foreshadowing with the Potter family losing their son at age 17 and the situation that you and Nicole find yourself in, losing your daughter at a much younger age.

Adam Birchmeier: Yeah, it really taught me how to grieve. When I was 17 and I lost one of my best friends, my whole world view changed, right? At that time I had never lost anybody close to me and I thought that bad things only happen to bad people which we all know that’s not the case. I lost my faith. I was angry with God, went off the deep end for quite a few years, and all those male role [00:13:00] models that I mentioned previously — my dad, my grandpa, Mr. Potter, and others — didn’t give up on me, and they really tried to help me through that grieving process. But now looking back on how I grieved then, I’m able to project forward now, and going, these are the truths that I know, let me stay grounded. And thankfully I have Nicole by my side as well to help me through this whole process.

David Hirsch: Yeah, thanks for sharing. You’re very fortunate to have the family and support structure that you do. And life is full of challenges, right? Life’s a journey. It’s a little bit easier — not without its challenges, but easier — if you’re going through it with others. In some cases, like the positive adult male role models that you’re referring to that have been there and done that.

So let’s talk a little bit about your career. My recollection was you started out at Aflac — I love their commercials, by the way — and from there you went to the Muskegon Family Care, and then you’ve currently, and for a number of years, have been with Access Health in [00:14:00] the role of a Business Sales Representative. So I’m wondering where did your career start and where do you see it going?

Adam Birchmeier: Like you said, I started this part of my professional career with Aflac. I didn’t know that I wanted to be a salesman. I’m an introvert. But decided to take a chance on myself and started off with Aflac. I became a District Sales Coordinator with Aflac. And I started to reflect and I was just away from home too much. Nicole recently had gotten pregnant. I’m working 12, 13 hour days. And I just went, this life might not be for me. So I found Muskegon Family Care. They’re a family FQHC, so Federally Qualified Health Center. They take people with Medicaid, no insurance, that underserved population. Really latched onto their mission and what they were trying to do in the community.

So I went to Muskegon Family Care for quite a while. Loved everybody there, but had that itch [00:15:00] to grow. I didn’t see a path forward, just simply because I’m not a medical professional. There was only so far that I could go, and then I found an amazing non profit, Access Health, who serves the same population in a different way. So I’m their Business Sales Representative, so I bring the Access Health product to local businesses and we can help people transition off of Medicaid into a more traditional health care role.

And I love it. I love it at Access Health. They’ve been amazing through this journey with Maddie. Having a special needs daughter comes with its challenges. You have an appointment every single week and they’ve just been amazing. And through her death, they’ve really supported me. So I can’t say enough good things about the people at Access Health.

David Hirsch: Thanks for sharing. You and Nicole have been married for four years. I’m curious to know, how did you meet? What’s the back story?

Adam Birchmeier: So we met when I was 19, she was 18, and we were both [00:16:00] going through college. There was an instant connection between us. But we both had a lot of growing up to do, me especially. So we drifted apart and went down our respective paths. And then we reconnected when I was 26. So eight years ago. We’ve been together ever since, and she’s an amazing woman. I can’t say enough good things about my wife. I know that some people aren’t that lucky, right? But she has strengths where I don’t, and I have strengths where she doesn’t. We’re really a great team. That was evident during Maddie’s diagnosis. And then now, since she has passed, that’s even more evident now. Our big thing is just communication. And we communicate with each other very well, and we’re not scared to call each other out. And I think that’s been extremely helpful in our marriage.

David Hirsch: Yeah, thanks for sharing. Fun little insight that came to mind when you were saying that you have a happy marriage is that when we do our annual conference, the Special Fathers Network Dad’s Virtual Conference, [00:17:00] we ask the participants a number of questions. And one of the questions has to do with their marital status. Single, married, divorced, other. Most people just check the box. And if there’s two or three hundred dads that participate in the conference, there’ll be like two or three, maybe like yourself. They don’t just check the box that they’re married, they indicate that they’re happily married.

Adam Birchmeier: Being in the Special Fathers Network, one of the most traumatic things that can happen to the marriage is actually a special needs diagnosis for a child. That is an extremely traumatic part of a marriage. And I don’t judge anybody. The most important thing is to be happy, right? And thankfully I find a lot of happiness inside of my marriage.

David Hirsch: So let’s talk about special needs. Prior to starting your family, did you or Nicole have any connection to the world of disability or special needs?

Adam Birchmeier: No, not particularly. Um, disability, the deaf community. Growing up the way that I did, I never viewed it as a disability, right? It was [00:18:00] just hey, here’s a group of people who can’t hear the outside world. They’re still a part of the world and that would probably be my only connection to the other side of life, right?

David Hirsch: Yeah thanks for sharing. That’s an important insight, right? As long as you’ve known your parents, they couldn’t hear. It’s not like they went deaf after a certain period of time. That’s just been your born reality, right? For you and your sisters for that matter. And maybe you’re just a little bit more insightful and accepting of people with differences because of the loss hearing impairment that your parents have.

So what was Maddie’s diagnosis and how did it come about?

Adam Birchmeier: So Maddie’s diagnosis came December 3rd, 2021. She was 18 months exactly. It was a long journey to get to that diagnosis. So when Maddie was five months old, so November of 2020, she contracted COVID. This was still in the beginning stages of the pandemic. The original strain was still out there. And when she [00:19:00] contracted COVID, she was hitting all of her milestones. And then after, she started falling behind. The doctors and therapists actually chalked it up to a post-COVID delay. That led to an interesting journey. We were contacted by the Detroit Free Press. And they came out and they did a story. And it led to Madeline being on the cover of the USA Today, which was interesting. Seeing your daughter on the front page of a national news organization was very interesting. But underneath all of those delays, it actually wasn’t COVID. It was actually Angelman syndrome.

So when Maddie was 16 months, we finally got approval to do genetic testing. At 17 months, she developed her first set of seizures and then at 18 months, the test results came back with the news that Maddie had Angelman syndrome.

David Hirsch: Yeah. Just to paraphrase what you’ve said, [00:20:00] the COVID diagnosis at five months was the beginning of the journey, if you want to call it that. It wasn’t necessarily misdiagnosed, but it was covered up, if you will, with the COVID. And when you got the diagnosis finally, because there was a year plus of delays, I was wondering what were the fears that you and Nicole had at that time?

Adam Birchmeier: I instantly got on Google and just Googled ‘Angelman syndrome’ and it brought up all of the negatives that were associated with Angelman syndrome. My fear was that I would never know my child. At that time I just viewed it as a devastating diagnosis. I couldn’t see the positives. I started thinking about all those societal norms that you place on your child. The biggest thing that stuck out in my mind was I’ll never be able to walk my daughter down the aisle. And I put that expectation on her because my wedding day was one of the best days of my life [00:21:00] and she’s never going to experience that. And I started thinking, what kind of life will she have?

But fast forward just a little bit later, I realized that it wasn’t about me. It was about my daughter. What is going to give her the best life? She doesn’t care about walking down the aisle. She cares that she has a loving family around her that interacts with her, that’s playful, that teases her, that’s there for her when she’s upset, but also there for her when she’s extremely happy. And once I made that mindset switch, I feel like my relationship with my daughter just grew exponentially.

David Hirsch: Yeah thanks for sharing. That’s a very important realization to come to. Some never come to it. Some parents, not just dads, might be in denial for an extended period of time. So it’s remarkable that you came to that realization in a relatively short period of time. Was there some meaningful advice that you got early on that helped put the [00:22:00] situation in perspective?

Adam Birchmeier: I think the best advice that we got was to not ever discount our daughter. The saying goes in the Angelman syndrome community, when you’ve seen one child with Angelman syndrome, you’ve seen one child with Angelman syndrome. Everybody develops differently. So my whole goal with Madeline was never to think that she couldn’t do something, to push her as far as she could go. And then she would be able to tell me, hey, I need a break or, hey, I’m not going to be able to do that. And just to be thankful to have them with you. And that was always my mindset. Not always. I definitely went through a grieving period, but once I came out of that, it was, my daughter’s going to have all the experiences that a neurotypical child has. We might have to put in Plan B, Plan C, but we’re at least going to try. And if she tells us no, hey at least we tried.

I think a perfect example of that is the ballet. All the girl cousins [00:23:00] and the aunts went to the ballet to see Cinderella the first year. And all of us guys were able to hit up the various watering holes in downtown Grand Rapids while the ballet was going on. And the first year, my daughter didn’t make it to intermission. She just had to be out of there. I went and I picked her up and then us guys and Maddie just sat at a restaurant and talked and had fun and played with Maddie. But then the second year, the girls went to see The Nutcracker and Maddie sat through the entire show and she was happy and she was fine. So just not setting expectations, but realizing that, hey, things could go wrong. So if they do go wrong, let’s just have a plan B in our back pocket.

David Hirsch: Yeah. Thanks for sharing. Oh, that’s a very insightful story. Do you see any important decisions when you look back that you made that might have been pivotal?

Adam Birchmeier: I think doing whatever it takes, that was the most pivotal decision that we made. There’s various specialty clinics that specialize [00:24:00] in Angelman syndrome. We were fortunate to go to Children’s Colorado to see Dr. Dewis. And we made a decision early on that, hey, if this has to be our vacation each and every single year, it’s going to be our vacation each and every single year.

You would hope that you would make that decision for your child, but it’s not always that way. We just decided let’s put our needs on the back burner and let’s focus on getting Maddie the best help, the best experts. That was our mindset during the post-COVID delay era where people just thought that it was a post-COVID delay and then it just continued with the Angelman syndrome diagnosis.

David Hirsch: Yeah thanks for sharing. When I hear stories about individuals like Dr. Dewis, I think of them as the angels that show up in our lives. And you don’t know it at the time, sometimes you do, but you can look back and say how important that was.

Adam Birchmeier: And just to speak to Dr. Dewis specifically, when Maddie had her medical event here, it was about [00:25:00] 7:30 in the morning Michigan time, so it was 5:30 in the morning Colorado. And Dr. Dewis answered her cell phone. She was able to speak with the emergency room doctor and get Maddie stabilized. She checked in with us all throughout our hospital stay. And then she even flew in for just one day just to attend Maddie’s funeral and to be there with us. She’s an amazing human being and there’s a lot of angels on earth that are inside that Angelman syndrome community that drop everything just to be there with you.

David Hirsch: That’s very powerful. Thanks for sharing.

Tom Couch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast in just a few moments. But first, this quick message. Please help 21st Century Dads gather research on families raising children with special needs by having them complete the Special Fathers Network Early Intervention Parents Survey. A link to the survey can be found in the show notes. [00:26:00] As a token of our appreciation, each person, mom or dad, who completes the survey will receive a Great Dad Coin. Thank you. Now, back to the conversation.

David Hirsch: Not to focus on the negative. What were some of the biggest challenges that you faced, you and Nicole faced?

Adam Birchmeier: It all just blends together, right? You take the good with the bad, but I think it would depend on the month. So we had an issue with childcare for about a month or two until we found the daycare that Maddie ended up going to. But even then, as soon as she turned three, she was supposed to go into the school-aged room. And just physically, mentally, she couldn’t do that. And so we actually had to get a waiver from the state of Michigan so that she could stay in that room. And we had discussions of, hey, what if we don’t get this waiver? Who’s going to stay home with Maddie?

And then just all the insurance struggles, appealing decisions, having to comb through the EOBs, the explanation of benefits, to [00:27:00] see what got covered, what didn’t, what should have gotten covered. Since I have an insurance background, I remember calling on an EEG where they said that we owed $12,000 and the billing department told us you as a parent have to obtain prior authorization. And it was an emergent visit. And I’m going, you’re totally wrong. But this woman just said to me, you don’t understand this. That’s what you’re supposed to do. And coming from my background, I know that’s not the truth. So just the constant battles, getting her wheelchair approved, getting her safety sleeper approved. We literally moved mountains to get Maddie what she deserved. And sometimes you just felt so helpless, but you just got back on the phone, and you knew that was what was best for Madeline.

David Hirsch: Thanks for sharing. So you talked about the impact that Maddie’s had on your marriage. But I’m curious now, what type of impact did she have on your extended family?

Adam Birchmeier: She was the [00:28:00] center of our family, from her aunts, her uncles, her cousins. I think everybody was scared at first when Maddie got her diagnosis. What would it mean? But just Madeline’s smile, her gentle nature, even though she pulled hair, she was still gentle. She really became a connective force in our extended family. And that even reaches out to my great aunts and great uncles. Everybody was curious. Everybody saw the joy in her face and just wanted to be around her. She was charismatic, but she didn’t have to say a single word. You could just see in her actions, her expressions, her laughter. It really brought joy to a lot of our family.

David Hirsch: One of the things that I’ve learned with other Angelman families is that it’s referred to as ‘the happy child syndrome.’ And I’m wondering if you can speak to that.

Adam Birchmeier: Yeah, happy child syndrome, happy baby syndrome. I can tell you that teething was a breeze. Even though she had [00:29:00] a low grade fever and was probably hurting for a majority of the time, she was smiling through it, she was laughing through it. They just bring this… Angelman children or Angelman individuals just bring this… I always call it pure love.

There was something that I was kicking around in my head that I was going to create a story around. And this was just a couple of weeks before Maddie ended up passing. But I thought to myself, I had this phrase that came to my mind that I couldn’t get out. It was every night when my child goes to sleep, she goes to heaven. And when she wakes up, she brings the joy back to this world. I think that really speaks to how a lot of Angelman children act. But that doesn’t mean that they don’t have their bad days. It doesn’t mean that they’re not… My daughter was a little spitfire. She was headstrong and she wanted to get her way and she was more than a diagnosis. Even though she had that Angelman syndrome diagnosis, even though they have what’s called happy baby syndrome, they’re [00:30:00] still an individual. They still have their bad days. They have their good days, but it’s just kinda… They start up here, they start a little bit higher than you or I start, I would say.

David Hirsch: Have there been some supporting organizations that your family has benefited from?

Adam Birchmeier: Yeah I cannot say enough about the Angelman Syndrome Foundation. Their CEO, Amanda Moore, is fantastic. I don’t know how she does it. I don’t know how she has the energy to help serve our community because a lot is demanded of her and she consistently under promises and over delivers.

The Angelman Syndrome Foundation has been a rock for our family. We attended the family conference in Austin back in 2022 and it was just an amazing space for us as a family to connect with other families and we’ve met some amazing people through the Angelman Syndrome Foundation, whether that be [00:31:00] clinicians or just other families. It’s just a fantastic organization and I cannot say enough about them.

David Hirsch: Thank you. Any others? Any other organizations?

Adam Birchmeier: So we started to dip our toes in FAST, the Foundation of Angelman Syndrome Therapeutics, I believe it is. They actually reached out to us when we were first diagnosed, but a diagnosis is like drinking from a fire hose. Everything hits you all at once and you have to prioritize. But I know that people, that the organization as a whole, FAST does amazing things for the Angelman syndrome community as well. Continuing our daughter’s legacy is very important to my wife and I. And at the end of the day, there’s still 500,000 individuals worldwide who have Angelman syndrome. It’s our mission to help those families, help those individuals live as fulfilling of a life as possible.

David Hirsch: Yeah. Thanks for sharing. We’ll be sure to include information on both those [00:32:00] organizations in the show notes. One of the things that you did, and at a pretty young age, as a young father I should say, is that you created a website called Maddie’s Joy. There’s a blog and a podcast. And I’m wondering if you could relate to our listeners what motivated you to do that?

Adam Birchmeier: It was more for me than anything else. I started the blog about three months after Maddie’s diagnosis, and at the time it was just a creative outlet for me. I needed an outlet to express my feelings. So for the blog it’s very personal, it’s very customized to our journey. And I just thought, hey, maybe 10 people will read these blogs. However, it grew so the blog has actually been seen in 22 different countries. And then the podcast sprung from that. And then with the podcast, I tried to take a more holistic approach. It’s that adage of, how does a priest come up with [00:33:00] his homily? It’s what they need to hear. It’s for the priest. They just end up telling it to the world. And that’s how I took the blog and the podcast. It was just, hey, this is how I’m feeling. I failed as a parent this week. This is what happened. Or, hey, Maddie did something incredible, a new skill she learned. I always try to be as honest as possible. I never want to be a public success and a private failure. And that’s just how I approach the blog and the podcast and it’ll continue. I’m not quite sure as we sit here today what it will look like, but I do know that spreading awareness, spreading our journey is important. And I just want to continue that mission.

David Hirsch: Yeah. I’ve read a number of your blog posts. I’ve listened to a number of the podcast episodes and I would give you an A+ on your authenticity. It’s just speaking from the heart. And I think that’s what really appeals to people. And the most recent podcast episode was you reading [00:34:00] Maddie’s eulogy.

Adam Birchmeier: Episode 20 of the Maddie’s Joy: An Angelman Journey Podcast is a very somber episode.

As many of you know, Madeline did pass away on August 30th after suffering a medical event. There’s so many of you who reached out to me, reached out to Nicole. And I decided to do a reading of the eulogy that I did at Madeline’s Prayer Service. Like I said we’ve made friends not only throughout the country, but throughout the world, and if people could be there, I know that they would have been there. And I just wanted to share, I wanted to memorialize my daughter. I wanted to thank all the fantastic people that were in her life.

When Maddie spoke of Jesus and recounted the three years, two months and 27 days she spent on Earth, I hope she told him about all the adventures she went on. I hope she told him about all the people she met. I hope she told him about all the fun she [00:35:00] had. I hope she told him about the lives she impacted. I hope she told him about the lives she saved. Ultimately, I hope she told Jesus about how much she was loved. Nicole and I do not know what the future holds for us. We do know that we will always be a part of the Angelman syndrome community. We will never stop advocating and fighting on behalf of the 500,000 people worldwide who have been diagnosed.

For me, I would like to think that I made a huge impact in my daughter’s life, but I also know that it wasn’t just me, it wasn’t just my wife, who raised this amazing young girl. We had so many people in our corner, so many people that we relied on. And in her eulogy I wanted to express my thanks. I wanted to express all the accomplishments that my daughter had, and I wanted to make sure that she was never forgotten. And I think that eulogy kind of puts everything into perspective.

David Hirsch: Yeah, it was very powerful. One of the most touching eulogies [00:36:00] I’ve ever heard. And I just want to say thank you for being so open and transparent and sharing it as opposed to keeping it for yourself even though it’s a very personal situation when you eulogize somebody. I think that there’s strength and insights, inspiration that people get when they read or hear what it is that you had to say. So thanks again for sharing.

Adam Birchmeier: Yeah it goes back to why Maddie’s Joy — the website, the blog, the podcast — was created. It was hey, these are our lowest moments. Here’s the top. Here’s the tip top. I feel great. And It’s a therapeutic outlet. I just wanted everybody to know how amazing my daughter was and how she impacted so many lives.

David Hirsch: Thanks again. So I’m thinking about advice and I’m wondering what advice can you share with parents, specifically dads, who find themselves on the receiving end of a diagnosis of a child with special health care need.

Adam Birchmeier: Nothing changes. My daughter had Angelman syndrome for 18 months before I found out, but at the end of the day, that’s your [00:37:00] child. One of the best things that happened to my relationship with my daughter was when my wife… My wife is a nurse, but when she was on the clinical side of things, I got to spend every other weekend with my daughter. I call them Maddie and Daddy Weekends. And having that alone time, having that one-on-one time, I am so grateful for. So I would encourage any dad out there to have that alone time with your child. Whether it’s a neurotypical child, whether it’s a neurodivergent child, give your partner a break. And just be there with your child because I’ll tell you what, I learned so much from Maddie and she didn’t utter a single word to me. And it was the most fulfilling, it was the most fulfilling of my life.

David Hirsch: Yeah, thanks for sharing. I interviewed an individual in Israel. His name is Doron Almog. It was episode number 100 and he had a son with autism who passed away at age 32. And Doron [00:38:00] gave this TEDx talk about his experience not just as a father, but as one of Israel’s most well-recognized or decorated military generals. And what he said about his son, Eran, is that Eran was his greatest teacher. And Eran was nonverbal as well. And it was a very powerful statement. And you said almost to a word exactly what he said, and it’s almost beyond words. So I just want to say thank you again for being so open and authentic about your situation.

Is there anything else you’d like to say before we wrap up?

Adam Birchmeier: Yeah. I think Maddie’s diagnosis opened my eyes to a whole new world, a whole group of people who might be struggling in silence because of a diagnosis. And then through her death, I also learned that there’s people like my wife and I, who can’t believe that the sun rose in the east this morning and is going to set in the west. So I think the biggest part that I’ve learned through Maddie’s diagnosis [00:39:00] and her death is just compassion. You never know what your neighbor is going through, what that person in the checkout is going through. At times I find myself my fuse has gotten a lot shorter. And I just need to take a breath and be as forgiving as possible because I think most people have good intentions. And hopefully people will give me that grace if I ever lose myself, if I ever lose my head, that they understand that, hey, this person might be going through something. I’ve had so many amazing people that were strangers to me a year ago, two years ago, that I’ve been able to rely on. And hopefully I’m that person for them as well, if they ever need me. And I think that’s just my two big takeaways is just be compassionate and just try to be a rock for somebody else if they’re going through a difficult time.

David Hirsch: Very profound, spoken from the word of a 34 year old young man.

Adam Birchmeier: Thank you.

David Hirsch: Thanks for sharing. Let’s give a special shout out to Nathan Warner of Centennial, Colorado, a fellow [00:40:00] Angelman dad, for helping connect us.

Adam Birchmeier: I can’t thank Nathan enough for introducing me to this podcast, to this group. So thank you, David, for having me on and thank you, Nathan, for connecting us.

David Hirsch: If somebody wants to learn more about Maddie’s Joy, Angelman syndrome, or to contact you, what’s the best way to do that?

Adam Birchmeier: Maddiesjoy. com has email, all the social media links there. So that would probably be the best way. And then just going on to the Angelman Syndrome Foundation website, if you want to learn more. Same with FAST, the FAST website as well.

David Hirsch: We’ll be sure to include that information in the show notes. It’ll make it as easy as possible for people to connect. Adam, thank you for your time and many insights. As a reminder, Adam is just one of the dads who is part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father or are seeking advice from a mentor father with a similar situation to your own, please go to 21stCenturyDads.org.

Thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I [00:41:00] hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Dads Foundation is a 501c3 not for profit organization, which means we need your help to keep our content free to all concerned. Would you please consider making a tax-deductible contribution? I would really appreciate your support. Adam, thanks again.

Adam Birchmeier: Thanks so much, David.

Tom Couch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads. To find out more, go to 21stCenturyDads.org.

David Hirsch: And if you’re a dad looking for help or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to Facebook.com, groups, and search “dad to dad.” Lastly, we’re always looking to [00:42:00] share interesting stories. If you’d like to share your story or know of a compelling story, Please send an email to David@ 21stCenturyDads.org.

Tom Couch: The Special Fathers Network Dad to Dad Podcast was produced by me, Tom Couch.

Thanks again to Horizon Therapeutics, who believe that science and compassion must work together to transform lives. That’s why they work tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics at HorizonTherapeutics. com