Episode 51- Alyssa Riedl – Life Is Moving Along -8 Children – 2 Biological and 6 Adopted!

 
On this podcast, Alyssa shares her story of having 2 biological children and then adopting 6 other children.
 

Alyssa shares the frightening story of when her first biological son coded after he was born and then experienced seizures. She also shares the story of her daughter’s birth at 27 weeks and their long stay in the NICU.  

She then talks about how she and her husband adopted their other 6 children.  

She shares the details of a typical day in the life of the Riedl family.

Alyssa describes each child's greatest strength and biggest challenge.

In addition,  she talks about her own challenges as a mom to 8 children.

Alyssa talks about how she found support from other families who have children with special needs, and how that support benefits her.

She also talks about how she maintains her own health so she doesn't get sick with so many kids depending on her.

Plus, she shares about her relationship with her husband in regards to their marriage with so many children. 

Alyssa talks about the first time one of her children had a GI bleed and why that was one of the scariest moments of her life.

Finally, Alyssa shares with families a final tip on parenting and raising children with special needs. 

Join us as Alyssa shares her inspiring story. 

 

Click The Link Below To Listen To The Walking With Families Podcast on Stitcher!

 

Podcast Transcript

Chuck: So today on the podcast, Rita and I are here. Kelly is out travelling and vacationing. So she's not going to be doing this today, but Rita and I are here. And we have the privilege of welcoming Alyssa Riedl to the podcast today. And what's unique about Alyssa is she has eight children. And she's going to share with us about her children. And some of them are adopted, and some of them are natural, but they're all hers. So that's what makes her unique. And welcome, Alyssa. How are you today?

Alyssa: Hi, here. I'm great.

Chuck: We're excited to have you. As I said earlier, you have the honor of most children on the podcast.

Alyssa: I'm excited to be here.

Chuck: We're excited to have you. So as far as where do we begin with this, I guess, I'd start with your first child and...

Alyssa: Yeah. So we have eight children. I have two biological and six adopted. They range in ages from, my oldest is 15, and my youngest is two. My oldest son, by birth, Ethan, is nine years old. And my oldest daughter, Grace, by birth, is eight years old, and they are a year and 24 hours apart, so we have Irish twins in the house. I currently have three 8-year-olds in the house, a 9-year-old, a 10-year-old, 15, 5, and 2.

Rita: And you can speak in whole sentences - I'm very impressed!

Alyssa: Thank you. So our oldest son, he was born in Warrenton. He was a regular delivery at Fauquier Hospital. He ended up coding on us. He had CPR done on him for 11 minutes, seemed to recover fine, and he was sent home with us until about six weeks old when he started having seizures. And that was our first experience with becoming a UVA family. We spent part of our summer at UVA after his birth trying to figure out what was going on. He did have a small brain bleed from his birth, and they took care of us and took care of that. And it actually ended up being that he reabsorbed that brain bleed, and he is an amazing nine-year-old today.

Then we had our daughter, Grace, at UVA, and she decided to bless us with her presence at 27 weeks due to myself having eclampsia. And she came at 27 weeks, and she was two pounds at birth, and she spent six weeks in the NICU down at UVA. So that was our second experience with the UVA family, and we were a NICU family. She had new complications in the NICU. She did amazing. We saw a lot of various sad things during the time that we spent in the NICU. She lost two of her podmates that were next to her. So that was very gut-wrenching to our family watching other families go through that experience.

When we brought Grace home from the hospital, my husband and I were told that we couldn't have any more children. We knew a social worker in our local town, and she asked us if we would like to be a respite foster family for the holidays. So we went through foster parenting classes and finished them in our home study. And two weeks before Christmas we got a call about three siblings that needed a home for just the holidays, an older brother, who was seven, and two sweet little girls, they were his half-sisters. And long story short, the sisters ended up leaving us, and the older brother became our oldest son at the age of seven.

Then, from there, we had three kids, and life was moving along. And we got another phone call, two little babies that were in emergency foster care, and our social worker thought that we would be the perfect forever family for them. And when they came to our house, we immediately knew that with the older of the two little girls that there was something very wrong. We weren't sure what. Our pediatrician, being a UVA doctor, sent us immediately over to the geneticist, Dr. Wilson, who is amazing. We met with him, and he told us there was something wrong, but he was not sure what was wrong. He ran a battery of tests and come to find out Leah was diagnosed with a chromosome duplication. This causes her to have an intellectual disability. And they also discovered that she has what's called as Ehlers-Danlos and Brittle Cornea Syndrome. So there's a possibility that at some point, she could lose her eyesight completely, and she bruises very easily. She has elastic-like skin, which is the best way to explain it, but she's fabulous. She's 10. She's doing amazing. She goes to regular elementary school and absolutely loves it. Here's the dog, sorry (her dog enters the room).

Chuck: That's okay. We don't mind.

Alyssa: Sorry.

Chuck: It's not impacting the quality, so don't worry about it.

Alyssa: So that is our oldest daughter, Leah. Like I said, she does have an intellectual disability. So she actually has two main syndromes, Ehlers-Danlos and the Brittle Cornea which, like I said, at some point could make her lose her eyesight. She has very poor fine motor skills. And then she has a duplication of one of her chromosomes, but there's so few people in the world with it. They haven't named it yet. She has three things kind of going on, but man, girlfriend, she does her thing, and she goes to school, and she's one of the happiest kids you've probably ever met.

So, we then had five kids. We were doing life, and we got a call...had another pea pod, who had been born at...well, not born, abandoned at Georgetown Hospital in Washington, D.C., and he had been living there by himself with the nurses and doctors who were taking care of him for three years. So my husband and I agreed, we would drive up to Georgetown and we would go meet him. And he was living on the transplant floor at Georgetown Hospital for children. And we walked in the room and Kamari looked at my husband and I, and said, "Where have you been my whole life? I've been waiting for parents to come see me."

And we were smitten. I told my husband, "Go home. Get my bags. I'm not leaving this child here in this hospital by himself." Kamari was born with gastroschisis, and that's where his bowels were on the outside of his body. Many children are born with this, they don't know why or what the cause is. His mom knew at her...his first mom, at her 20-week ultrasound. She had great prenatal care we were told. So sometimes this just happens. Kamari was actually born at Mary Washington, sent to BCU. BCU then sent him to Georgetown, to the transplant hospital. He had multiple surgeries to lengthen his bowels, to cut out the infected bowels. He no longer has a belly button, but he has a nice, great big scar. He proudly shows people and says, "These are my battle wounds." He's very proud of them.

He now has what's called, short gut syndrome. So everything he eats pretty much goes right through him. When he came home from the hospital, from Georgetown Hospital to my husband and I, he was four years old, and he had 24-hour nursing care, had a feeding tube where he was fed for 24 hours a day, had a central line running into one of his major arteries, and he was on IV fluids multiple times a day. He was on 32 different medications. We were told Kamari might live a month, he might live a year. And they told us he was probably never going to go to school. He really shouldn't go out in public. He would probably never eat by mouth because at four years old, he had nothing but water up until that point. He was not potty-trained at that point.

And through all the chaos of bringing him home and turning our house into a makeshift hospital ward for him, and having other little toddlers running around our house, and full-time nurses coming and going every eight hours, I looked at my husband and I said, "If he's gonna live a day, then he's gonna be a little boy. If he's gonna live a year, he's gonna be a little boy." I called our local school, and I said, "I have this little peanut. Will you take him?" And they said, "Well, Alyssa, we've got your other kiddos. We're up for the challenge." So now, four years later, this July, Kamari is now going into third grade. He is on 10 medications. He is only tube-fed overnight. He eats three meals a day, plus snacks by mouth. He no longer has a central line. He is not on IV fluids. He is a walking, talking beautiful little boy who is defying the odds and doing everything that he was told was not going to happen.

He's potty-trained. He does have au pair with him that makes sure that he's eating enough calories during the day to help him throughout the day since he does still need formula overnight because everything does go through him so quickly. And he is on some pretty high levels of vitamins to help him because when you have short gut, you tend to not absorb the nutrients and calories that you need to sustain life. But he is defying all of the odds in our house. You would look at him, and you would not even know, if I said, "This is Kamari," and introduced you to him, you would not know that there was a thing wrong with him. And so we had our six-pack then for about a year and a half. And then we got a call for our two little boys…

Chuck: Did you say you had your six-pack? Is that what you said?

Alyssa: Our six-pack. We called them our six-pack, yes. Kamari, we thought, was the grand finale to our family. And so we called them our little six-pack, we had these six kids. And so life was happening. And it was the end of the school year two years ago, and we've got a call about two little boys that were little. They were three and seven months old. And so we said, "Yes” one more time. They were supposed to be with us for the summer, and we are now in the process of finalizing their adoption. And we are actually no longer a sponsor family. We have decided that eight is our number.

Rita: So you say, have you taken your phone number away from whoever is calling you because…

Alyssa: We have. My husband has said that our foster care license has gone through the shedder, to lose our phone number. So eight is enough. Eight is our number, and eight is enough. So that's kind of how the Riedl bunch came to be. And like I said, we spend quite a bit of time still at UVA with the different varying medical issues. My husband and I joked that they need to put a parking space with our name on it at this point. But I'd love any questions.

Rita: I'm just trying to figure out how you do it all. And also, accessing services. It sounds as if they certainly know where you live. So I'm hoping that the access to services was made easy for you so that you could give these children the best chance at life that you could. But could you talk about that a little bit of how you...

Alyssa: Sure, sure. So for us in services, I'm guessing, you're meaning like healthcare for them, how to get them plugged in?

Rita: Right.

Alyssa: So when Kamari first came to us, he had what's known in Virginia as the Tech Waiver, which covered his nursing care in home, and he actually came to us with that. Accessing care, be on that has been a little bit of a struggle. It had always been calling another mom that I knew that may have had another medical child, or calling our pediatrician's office, or UVA and saying, "Hey, do you know so-and-so? How do I get X, Y, and Z covered?" because Kamari is on very expensive formula. So he now transitioned from having a Tech Waiver through the Virginia State Medicaid System, to the Elderly and Disabled Waiver, which he now has and does help cover, aside from being on my husband's regular government health insurance that my husband carries, he now has the EDCD waiver. He has a case manager who helps us through the community service board here in our town who kind of navigates the whole system as far as getting him the supplies and things that he needs, because at one point, he did need a feeding specialist and an occupational therapist.

And I will say, the community service board was a huge part of getting us and plugging us into where we needed to be along with his gastroenterologist and his pediatrician. So services, yes. And I will say there were questions that I had, and you know what? Our village, that I like to call them, finding other moms who have a medical kid to kind of say, "Hey, is your kid getting this?" or, "Where do I find out this?" was big for me.

Rita: Is there any type of support group, active support group for moms with kids with multiple special need children that meets regularly or...?

Alyssa: So it's actually funny that you asked that. Prior to Kamari coming to us, I actually ran the Culpeper County Parents of Special Needs Support Group. It has now become more of an online support group for our local community because I had to take a back step when Kamari came to us. I'm not currently in a support group care in our local community. I know that there is a huge need. I have been asked over the last couple of months to reinstate the support group and the local meetings at our local library. I do know that UVA has some support groups, but we're about 45 minutes from them on a good day with no traffic. That is something that I know our area needs, and that I wish that there were more of locally.

Rita: Take us through a typical day, if there is such a thing as a typical day. You know, when you just start, how do you and your husband navigate all of this?

Alyssa: So my husband works 14-hour days in Northern Virginia. He commutes 75 miles one way to work. We are blessed that he does get every other Friday off. So we try to schedule any major doctor's appointments, surgeries, outpatient things on his Fridays off so that he can either be home or go with me. A typical day for me starts at 4 a.m. I get up, get my coffee going. We usually do backpack lunch boxes, school, homework, anything like that the night before, and I lay it out. We have kind of two shifts of kids. I get our older kids up, fed, get dressed, out the door. And then I end up getting the six little kids up. And they're a little bit slower, and there's medications that they all take, whether it's for allergies or vitamins, or Kamari's 10 meds that he takes.

So we do meds, and we kind of talk about our day. And the kids really like to know what I'm doing during the day or where I'm going to be, and I shuttle them all up to the bus stop and out the door, and then my clock starts ticking. I do about 42 loads plus, that's nobody sick, of laundry a week. So I try to get some laundry done. Usually there's phone calls either to insurance companies or doctor's offices, or scheduling somebody for something, whether it's an afterschool activity or a haircut, something very basic. Then there's lunch with my two little ones who are still home, nap, and during nap, I usually try to make a dinner for everybody so that when it's mad chaos in the afternoon, dinner is done and I don't have to think about it.

After nap, my big kids are getting off the bus, and it is homework, medication again, because I have a couple of kids who take afternoon meds when they get off the bus. Usually, we have a good hour, hour and a half of outside time playing, running somebody to an activity, etc. Then it's showers, dinner, stories, maybe homework with the big kids, and then it's bed. My husband and I try to get an hour in the evenings alone together, but it doesn't always work out that way. Usually, one of us ends up falling asleep snoring while the other one's still talking, but it makes for very busy day. And usually I have a very long list, and most days, I don't get everything done, and I just have to kind of let it go.

Chuck: So bedtime is what time?

Alyssa: Bedtime for the kids or bedtime for me?

Chuck: All of the above.

Alyssa: Bedtime for the kids is…the little kids, it's usually between 7:00 and 8:00, and my big kids, it's usually by 8:00 and 9:00. And I'm lucky if I make it to 9:30.

Chuck: This is such a great story. Gosh. I think one of the things I find so inspirational about the whole thing is when we were in the NICU at UVA, one of the most heartbreaking things to me were the children that didn't have the parents around, they had been abandoned, And then to hear you taking on children to give them a family, I think it's awesome. So congratulations to you.

Alyssa: Thank you.

Chuck: I think it's super that you're doing that.

Alyssa: And, you know, you brought up a really good point about these kids being left in the NICU. And as a matter of fact, when we went and met Kamari, he had a friend who was on the same floor as him that had been left as well. And people often say to me, you know, "Alyssa, what happened to them? What happened?" And you know what happens is these doctors and these nurses who are just angels in my book become their family. I have seen doctors and nurses go above and beyond, staying after their shift, leaving their kids at home to be with these kids that have been abandoned…who have been thrown up on and bled on, and have stayed with these kids going into surgeries. And Kamari will even tell you, he remembers nurses coming when he couldn't sleep and just staying with him, or staying with him and going back into the OR with him, because he had nobody else.

I'd look at Kamari, and people were like, "Oh, that never happens." But to be honest, it happens a lot more than what we all know. And many of these kids end up in foster care. It's very hard for these social workers to find family, families that are willing to step up to the plate, that say, "Bring it on." So that's something to think about. And you are right, it does happen, and there are kids sitting in that NICU that have nobody.

Chuck: Yeah, I saw quite a few times where doctors and nurses coming in on their off shifts, like you're saying. Like, they were coming in prior to their shift, staying late after their shift, a lot of times, they were in plain clothes when they would come in, so days off to just hold them. And I always have thought that was, you know, just a heartbreaking thing. Every time I saw it, it just tore me up watching it. And anyway, to hear you adopting these children, I think it's great. So thank you.

Alyssa: Thank you.

Chuck: So the fact you have eight, and a great big, huge van that you carry them all around in…

Alyssa: A huge van. It looks like a people mover bus, yes.

Chuck: That's awesome. Talk about each individual kid, if you will. You just told us a little bit about each one. Talk about some of their challenges that they have and some of the things they really enjoy.

Alyssa: I'll get on the list. I'll start with my oldest. He's 15. He's a freshman in our local high school. He'd probably be totally embarrassed that I'm talking about him right now.

Rita: That's okay. That's your job as a parent.

Alyssa: He's amazing. He is artistic. He is taking Pre-AP classes. He is not sure if he wants to go into architecture or medicine right now. He loves to travel. Just an amazing kid, an amazing big brother who can probably run my whole house without me and would probably love mom to go on vacation and to do that. So he currently...his biggest struggle right now is we're not quite a little boy anymore and we're not quite a man, and we can't fully have a job or driver's license. So that's a bit of a struggle at 15 right now for him.

My daughter Leah, who's 10, she is just the most happy-go-lucky. She come with every new Disney movie that is coming out, loves "Simon Says," loves music. Loves, loves some music, and dancing, and going to school, and being with her little group of buddies. Her biggest struggle right now is she's losing her fine motor skills. It's part of her Ehlers-Danlos syndrome, being unable to write using her handwriting. She has a hard time right now picking up utensils. She has a very hard time washing her hair in the shower. That has become a huge struggle for her. So losing her fine motor and also having the intellectual disability, and not being able to explain to her what is going on within her body and why these things are happening to her, as a mother, has been extremely hard. And she gets very frustrated with herself because she wants to keep up with other kids. She wants to color and do what they're doing, and she's unable. So I'd say, right now, that would be Leah's biggest struggle.

Chuck: Before you go on would you talk about what that syndrome is?

Alyssa: So Ehlers-Danlos Syndrome, there is different types of Ehlers-Danlos. Leah has been diagnosed with type 6B, and it's actually, if you think of people, this is gonna sound a little silly, but people that are like contortionists. She has almost elastic-like skin, and it's very thin skin. She bruises extremely easily. If she bumps up against the desk at school, she'll come home with a huge welt and bleeding underneath her skin. So it's a connective tissue disorder is actually what Ehlers-Danlos is, and there's different ranges of it. Leah’s type affects her eyes, as well. So she has a brittle cornea. It could, at some point, and why she's monitored very closely at UVA, is that she could lose her eyesight completely. And currently, there would be...there is not a surgery to correct if she loses her eyesight because it would affect her whole eye. So it's not something that a transplant could fix or anything like that at this point, if that makes sense.

Rita: Is she aware of that, Alyssa?

Alyssa: We have tried to have discussions with Leah saying, you know, "Leah, if you ever have headaches or there's anything going on with your eyes, you really need to tell Mommy and Daddy." No...I mean, I think in the moment she gets it when we try to discuss with her that she may lose her eyesight, but then within two minutes, she's on to something else, whether it's something on the radio or a TV show or something she just remembered that she needs to tell me. So I'm not sure how much of it she is fully understanding. I don't know, which is hard. So that is Miss Leah.

Ethan, who just turned nine years old, he is our Mr. Dimples Man. Blonde hair, blue eyes, most compassionate kid you will ever meet. An amazing kid who just loves life, who loves everybody. Currently into doing Math 24 at school. He's my kid who loves school. If I told him we didn't have school tomorrow, he would probably cry. He loves school, loves to be around people. He's also my most sensitive kid, and that, I would say, is his biggest struggle. If he sees somebody struggling or hurt, he gets very upset. He doesn't like to see any of our other kids struggling or hurt. Kamari, Leah, especially, he has a very hard time with that. So I would say that's kind of his biggest struggle, but he is my outgoing, compassionate, vicarious kid, who is just happy about life.

Rebecca is our sweet and funny, very much so into singing kiddo, and can pick up a tune and a song within minutes. Rebecca is also in third grade with Kamari. And I would say Rebecca's biggest challenge, and she'd probably tell you this, too, is she cannot stand math. She cannot stand math. She wishes that math would just go away. She asks me daily if she has to continue doing math in third grade. She begs me not to make her do her homework and has to do math. But she is my singer, and she is just the sweetest, little peanut. She's super tiny, always has been one of my tiniest. Loves life, loves doing her fingernails, anything girly. She's super girly, but man, let me tell you, she can sing. Girlfriend can sing, and she can hold the tune, and we put something on the radio, and she picks it up within moments. So that is Rebecca.

And then Mr. Kamari, and you know all about Mr. Kamari. And, you know, you asked me about their biggest struggles. And if I had to sit here and tell you what Kamari thought his biggest struggle would be, it wouldn't be any of his medical. Kamari would take his medical over school any day. Kamari likes to tell his teachers when he does and does not feel like doing classwork. Kamari doesn't really care about grades. Grades mean nothing to Kamari. Kamari would just rather visit the other classrooms in the school, visit his friends, go and chitchat with different teachers, different staff within the school. School work, Kamari could care less about. If I told Kamari that we were removing school work from actual school, he would think that he had just won the lottery.

So I would say Kamari's biggest struggle to himself would be school, but he excels so much. He is bright. Kamari can hear something one minute and turn around and take a test the next minute, and ace it. He listens to everything going on around him. He could probably listen to 20 different conversations going on around him and remember everything that everybody said to him. He is sweet, and that's what keeps Kamari out of trouble. He is absolutely stinkin' adorable and sweet. He loves his younger siblings so much. He loves being a big brother. He loves that we are in the process of adopting the two younger boys. He loves to be outside. That's one thing that growing up in the hospital took away from him when he was much younger is just being outdoors. When we brought him home and we did bubbles, and took him on a bike ride and walked with them, I mean, it was like he had been living on another planet because these things that we take for granted every day, he had never been exposed to. So that's a little bit about Kamari.

Miss Grace, who is going into second grade now, she's currently in first, she is everything girly, animals. We currently have chickens. She has bunny rabbits. We have a potbelly pig that she absolutely adores. She informs my husband and I that she's gonna be a police officer, but she's gonna stay living at home with us for her whole life. Grace is our NICU baby. She is very teeny-tiny still to this day, true from her birth. She loves to walk around with her chickens in a stroller. She puts them in a stroller. So she's very motherly, very caring. Her biggest struggle is, she's right there with Kamari. She begs me daily to make school go away, every single day. "Mom, do we really have to go back?" "You got to go back, Grace." She and Kamari would be two peas in a pod. If I took out all the school work away but left the social aspect, they'd be great. So her biggest struggle is school. She does well in school. She just doesn't like school. So I would say that's one of her biggest struggles that we have to talk about daily.

Our next little peanut, he is just the most handsome little boy. He loves mud. No matter where we are, whether we're in a parking lot, getting ready to take family pictures, or just at home, he finds mud. He's five years old. He will go to kindergarten next year, but mud finds this boy like glue. It just sticks to him. That's my biggest mom struggle. He would tell you that it's fabulous. We'll be going to get family pictures, and he's covered head-to-toe in mud. I have some really great pictures of him just covered in mud. He loves his baby brother, loves anything to do with trucks and being outside, loves having older siblings and following them all over the house. He thinks that is just great. But his biggest struggle, I would say, would be prior to coming to us he didn't have a whole lot of social interactions with kids his own age. So learning to play with kids his own age and being around peers his own age has been a big struggle for him, and a big struggle for us to help introduce him to different situations with kids his own age and learning to share and play with kids his own age. So that's kind of been his biggest struggle.

And then our littlest ones, Bentley, who's two and totally full of life, telling us that he doesn't have to do anything, that he really has multiple parents parenting him at all times, including his older siblings, who likes to stick him in time out when they think that he's done something wrong to them. He is just full of life. He is all boy, loves to be outside with his older brother, Jessie. He has just figured out how to ride a scooter. He is just...he is ready to go to preschool. He informs me daily that he needs a backpack already. So he's ready to go to preschool next year, and...but I don't know what his biggest struggle is. I guess, telling us "no" currently. No, in that he's not doing stuff. I'm not sure that he knows what his biggest struggle is, but that's the biggest struggle that this mom thinks he has. That would be all eight of them.

Rita: So bringing them all together, was there ever a challenge where the six-pack said, we don't want two more added to this, or that…

Alyssa: So I actually was home with our six-pack when we got the call about the two little boys. I actually sat down and discussed it with them before I told my husband that they were coming home. That wasn't, Rita, to be honest with you, my husband hung up on me on his way home from working a 14-hour a day. They have always been "Mom, can we get more? Is there another kid at a hospital that's by themselves, that doesn't have brothers and sisters?" If you ask...the two little ones don't get it yet, but if you ask my six today, "Would you want another brother or sister?" they would say, "Is there another one?" There's always been a transition period throughout our house. We do have two of our kids have pretty significant reactive attachment disorder from being kind of shuffled around through the system and different people taking care of them.

So when they came home to us, our kids would say, "Mom, why is so-and-so acting that way? Why did so-and-so kicked the wall? Why did so-and-so spit today?" There's always been some sort of transition. But for the most part, I will tell you, people say, "Do your kids bite?" Rarely. We don't have fighting. We don't have...they're not bitter. And a lot of people say, "Oh, Alyssa, are your kids bitter?" They're not. I will say I have been blessed with the most compassionate kids. And like I said, if you ask them today, they would say, "Is there another kid without a mommy or a daddy or brothers and sisters that needs to come to our house?" We have adopted the six, and we actually have had six come stay with us that left us, that went back either with their moms or dads or grandparents or aunt and uncles. So my kids also understand that the main goal of foster care is to reunify them and help their families get better so that they can go home and be with their birth families. And our philosophy has always been if they can't go home, they can stay here. So, yes and no to the transition question.

Rita: You're just inspiration. And I think your children are very blessed to have you and your husband in their lives.

Alyssa: Thank you. We feel blessed to have each of them.

Rita: Well, that's the way it should work. That's the way it should work.

Chuck: The one thing I wanted to ask, how old were your two kids when you adopted the first child?

Alyssa: When we brought everybody, or started bringing them home, Ethan was 18 months old and Grace was six months old.

Chuck: Okay, gotcha. And I was trying to keep a tally of boys and girls. I'm not sure I've got that number accurate or not.

Alyssa: Okay. So we have five boys and three girls.

Chuck: Okay. I think this whole thing is just awesome. And so the little boy that was having the displacement disorder, the fact that he's at your house, if there's any family that can help them overcome that it is yours. And the fact he’s in it every day where he's got to learn to interact with others, I think it's awesome. I just think this whole story is super. As far as managing your schedules, like how do you manage, one, their medicine, and then manage all their activities? And your husband's away for 14 hours. That leaves you to do all these.

Alyssa: Who makes the bed?

Chuck: Yeah, like how do you do it?

Alyssa: We do conquer and divide. My husband is in charge of, or I put him in charge of Kamari's formula. I actually don't do anything with Kamari's formula at night time. That is all my husband. If we have an emergency and end up at the hospital, I tell the emergency personnel, "If you need to know his formula, we're going to have to call my husband." So he deals mainly with the nutritionist at UVA with that. Believe it or not, I actually have all of the kids' medications and dosings and times memorized, down to a tee. I make Kamari's meds for a week in advance. So we actually make them and put them into little...they go in syringes because he gets them via his feed tube, and I make them in little syringes, and I put them in little baskets for a.m., p.m., afternoon, and we stick them in the refrigerator for the week.

So I try to stay really organized and on top of that. I have kind of a system where different...I have different baskets for different meds in a cabinet, in our medical cabinet, where I know when I need to refill things or when we're getting low, and I just try to write it down and keep track of "Okay, I need to call this pharmacist this day or this one the next day." Our pharmacists in Culpeper are amazing. Usually, they're actually the ones sending me text messages saying, "Hey, you're getting low. Do you need me to go ahead and refill?" Because some of our meds have to be compounded. So usually, they're pretty good about that.

Our afternoons are total chaos. You asked how we do it. I mean, usually like being at the clock constantly thinking, "Okay, what do we need to be doing next?" But a lot of it is just prep work on the weekend when we are all home together and saying, "Okay, we need to tackle this project and this project." It's lots of sticky note. It's lots of making list. Me, my husband, and all the kids usually have a list of things in the afternoon they need to tackle or we need to get done. And a lot of people say, "Well, what kind of calendar do you keep?" I have had a phone calendar in my smartphone, I have had paper calendars. I have had huge jumbo wall calendars. And to be honest with you, just a regular calendar from Target or Walmart where I can just fill in but each person has a different color pen, usually keeps me on track of who needs to be where when. It's not quite that simple, but in my mind, I guess it just works.

We have, I won't lie, we have missed appointments, or I have had people show up on my doorstep and say, "Oh, I'm here for such and such," and I'm like, "What do you mean you weren't on my calendar?" So it does happen. It does happen. And we are always usually 10 to 15 minutes late to something. But you know what? People see us come in and they get it for the most part

Chuck: Right. That's great. That was fantastic. I just love your whole story of how you're doing this and giving all these kids a home. I think it's such a great story.

Alyssa: Oh, thank you.

Chuck: So I'm delighted to have you on and just learn all about you and your family. So as a parent, as a mom, we've talked about the kids' biggest challenges. What is yours?

Alyssa: I don't even know where to start with that. My biggest challenges would be time management, laundry, and meal prep. I could probably be doing better in the meal prep department instead of trying to wing it at 3:00 in the afternoon. Laundry is a huge struggle in our house, huge. And if somebody is sick or it's flu and cold season, laundry then has just totally taken over my week. On week where we have people sick in our house, it usually take out at least five nights that week. But I would say time management, trying to manage where everybody needs to be, when, how, the logistics of it, getting them there, getting them back home, how that's gonna work, what that's gonna look like, that's a bigger struggle for me and a bigger worry for me than it is my husband…just constantly getting people to where they need to go.

And I'm finding as they get older and they're involved in more, that's getting harder.  I will say a huge shout out to my parents. We have grandparents who live right around the corner, and they're amazing with helping grab this one from here, or taking this one there. I mean, they've even done pediatrician appointments for me when I had to be at five other events. We're blessed with an amazing town and amazing friends who get it and will say, "Hey, Alyssa, do you need me to grab this kid and bring him home? I'm already here." They'll text me, or they'll email me, and say, "Hey, Lys, I know I'm gonna be at this event tomorrow. You and Jaime don't need to go. Do you want me to take so-and-so?" So we're truly blessed with a great community, and like I said, having grandparents right around the corner. My husband will tell you that every Friday that he has off, there's some major events or occurrence, but we do try to tackle a lot of stuff when he does have those three-day weekends, which is a huge help to the schedule.

Chuck: Just listening to all these, I'm just like... So as far as your own health, you staying healthy is critical. Like, that's extremely crucial for you to be healthy. What do you do to care for yourself so you can maintain all of this?

Alyssa: Aside from a lot of coffee and lots of sleep - the biggest thing for me is sometimes just getting a break. My husband is fabulous about that. He will come home from work and say, "Why don't you just go to Target and get a coffee?" and just giving me a mental health break. Trying to schedule some of my own stuff, whether it's a hair appointment, or just wanting to have coffee with friends, or a girl's night out, and just making sure that that gets on the calendar and making sure that that's a priority. And the same goes for my husband. He tries to go out with his friends at least once a month. And we try to schedule a date night twice a month. We have an amazing sitter, and she's fabulous. She teaches preschool, and she comes to our house, and she literally picks up right where I left off. So we try to make that time away from the kids very special, and making it a priority, and it goes on the calendar every single month.

Chuck: Good for you. I think that's great because that was the other question is your marriage in all of this? How do you find time for each other? And like you said, you try to find an hour each night, but that always doesn't happen.

Alyssa: Exactly. It doesn't. And, you know, I'll be honest, a lot of people said when we started this adoption journey in, we were up to five or six kids, and they said, "You know what the divorce rate is?" And I said, "Stop right there." Not that I don't wanna be in that, and not...that I'm not interested in what you have to say, but I truly believe when you a large family and making your marriage a priority and scheduling those date nights, or calling up the grandparents and saying, "Hey, what do you have going on this weekend because we need you," or even call my grandparents and saying, "Could you just take one or two of them overnight for us?" or calling that friend and saying, "I just need that mental break. Can we have coffee today?" I think it rejuvenates you. And then you can come home and I feel like I could have a conversation with my husband, a clear conversation where we're both away. It's scheduling. It's making sure it's the priority, and it is on that calendar. And there is no veering from the calendar. My husband calls it our Bible.

Chuck: Yeah. Well, just in general, I've always thought the more you plan, the more free time you have.

Alyssa: Yeah, exactly. Exactly. You have to prioritize. And if the sheets  don't get clean today say, "Oh, well". You know, if it ends up being a frozen pizza, and the kids are happy, they're healthy, they're showered, their teeth are brushed - Oh, well, you know. It happens. It happens to the best of us. And there are some days where I just wing it. We slide by the seat of our pants, and emergencies happen. We have had two separate situations where Kamari had started bleeding out on us here at home, and on the spur of a moment, I looked at all of my kids, and I said, "This is an emergency. We need to pull together." And as I am flying out the door with Kamari wrapped in towels on the way to the hospital, and knowing that it's gonna be a week or two before I see my kids again, and my husband's flying in the driveway, it happens. We eat takeout, we eat pizza, we eat peanut butter and jelly, we're a normal family, and stuff does come up, and stuff happens. And part of it is just kind of rolling with it.

Chuck: Can you talk about when you had the GI bleed, or maybe it wasn't a GI bleed, just a bleed.

Alyssa: Nope, nope, you were on...you are right on. So we experienced our first GI bleed with Kamari on our way home from a spring break trip. We were on the side of 95, and my husband had just gotten onto the car and taken up bunch of the kids to the bathroom. And my husband came to the car and said, "Something is wrong. I don't know what is wrong, but Kamari's not acting right in the bathroom." So we continued on our drive home from Florida, pulled in the driveway, took Kamari to the bathroom as soon as we got home, and he passed out on us in the bathroom here at home, and there was a significant amount of blood. It just so happens that we are very close friends with our pediatrician, and I was texting her pictures, and she said, "You need to get him to UVA as soon as possible."

So my husband stayed here at the house, and I took him down to UVA where they weren't sure what was going on at first. They didn't know his intestines had twisted, the amount of blood he was losing. They were very concerned of what was going on. His GI doctor at the time was out of town, so they had to call in some other specialists. Multiple blood transfusions later, and they discovered - after a colonoscopy and an endoscopy - that where his small bowels and his large bowels are conjoined together, where they had to piece them back together, there are very large staples still in Kamari's intestines that are holding his intestines together. And large, large ulcers had formed around these staples and were causing him to bleed out on us.

So he's now on a very, very high dose of steroids in hope of keeping a bleed from happening. However, about a year and a half ago, it was morning time, chaos, kids getting out going to school, and Kamari got up, go to the bathroom, and started bleeding out on me again. And that was another week spent of Kamari being at the hospital. He was taken off of anything by mouth. He couldn't eat anything. He was on IV fluids, blood transfusions to try to get the bleed to stop. Like I said, he is on now steroids. Knock on a piece of wood, we have been GI bleed-free for about 18 months now. But now that we have had two happen, another one could happen at any point in time. And as a mother, seeing the amount of blood that such a little tiny person can lose has probably been, by far, one of the scariest things that I have ever witnessed or been through as a mother. And there's nothing you can do, feeling very helpless when these happen.

And it's kind of you're always on edge if he gets sick because really, anything can make these ulcers reappear, stress and illness, anything. It's almost like a ticking time bomb, and I would think to myself, "Oh my goodness, is another one gonna happen? Are we gonna get a fever? Is something going happen that's going to set him off?" And this will probably most likely be, we have been told, a rest-of-his-life-type thing that we constantly have to keep an eye on.

Chuck: So from these bleeds, did he have any cause and effect as far as implications, as far as what happened to his health because of them?

Alyssa: So he is on very high doses of iron. A month and a half ago, he had to go in and have an iron transfusion at the Transfusion Center at UVA. Nothing major because he did get the blood transfusions to make up for all the blood loss that he had, and nothing long-term. And the ulcers can come back, like I said, at any point in time. He could eat something that goes through his GI track that upsets it and an ulcer could pop up. When I've looked at them on pictures, we've actually seen pictures of them, they actually look like a cold sore inside your mouth, and they just open and they bleed. And so anything, really if you think about it, could cause it, a cold, a sinus infection, anything, but no repercussions right now other than he takes a very high dose of a steroid pill every evening.

Chuck: Well, I think you are an amazing mom. I do. And everything you tackle every day, and your normal I think is amazing.

Alyssa: Oh, thank you.

Chuck: So that said, I admire you for giving so many kids a home. And I think it's fantastic what you've done.

Alyssa: Oh, thanks.

Chuck: Kudos to you, and everything that you've accomplished, and you're helping these kids accomplish. I think it's quite the story you have, no doubt. So any last thing you wanna say to anybody, like any one piece of advice or any resources that you would share?

Alyssa: I think my biggest piece of advice being a mom to so many kids of different ages is: don't shut people out when they tell you they want to help, and ask for help. If you've got neighbors, ask for help. People are always willing to help. If you don't know who to turn to, call your pediatrician, keep bugging them. So I have our pediatrician on speed dial. If your kid is seeing a specialist, ask these questions, and don't feel embarrassed to ask the hard questions. I don't think there are any hard questions. And I think asking for help, always asking for help, is a huge thing. And making yourself a priority. I think that's number two. Making sure your marriage, yourself - make that time and those dates on the calendar, and making sure that those happen. And like I said, our biggest resources have been our pediatrician, and have been UVA, and have been the specialists. And stopping and picking their brain on stuff, or walking in with a note pad with a list of questions, and, man, you know what? They see me coming with that, and they make sure that they take the time, or they'll say, "Alyssa, you know what? We'll be right back. We've got to do one more patient, but we want to come back and answer all those questions." So that would be my biggest thing, that is find your tribe and love them hard.

Chuck: Great advice to close on. That's for sure. Well, I appreciate you doing this, and...

Alyssa: Thank you. Enjoyed it.

Chuck: We're super excited that you took the time out of your busy, busy day to share a few minutes with us and everybody who's listening. So thanks for doing that. And we will chat with you another day.
End Transcript

 

1 Comment

  • Amanda L Shoop

    Reply Reply June 13, 2017

    FOR KEEPS. I AM BLESSED TO GET TO BE PART OF YOUR VILLAGE. You did a fabulous job putting your story out there. Thank you for sharing.

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