I wasn’t, like, always wanting to necessarily just grow up and have babies. My mom had me when she was, like, 20, and I knew how hard raising kids was. I wanted to be able to remember me and Leonard and our love and why we wanted this. I just wanted to be less selfish and ready for what I knew was going to be, like, a big decision.
At the time, Leonard was finishing up 15 years in the Air Force. We decided to start trying, and we tried for, like, eight months and nothing happened. And then we actually were like, okay, well, maybe now is not our time, and we quit actively trying… and just if it happened, it happened. Putting it in God’s hands.
And right then is when we got pregnant. We were excited. We were super thankful because I know now that eight months is not a long time to try, but to me it was.
And then it happened to where my due date was one month before Leonard was going to be out of the Air Force. And so there was, like a little bit of panic of like, okay, so baby would be born, and then in a month, we would move to wherever Leonard would have some kind of job we didn’t really know. So there was lots of nervousness about where we would actually physically be.
I found out at, like six weeks. I feel like coffee started tasting weird to me. And then I was, like, a little bit late. And so good thing about living on base, we were really close to the doctor and just made an appointment, and I did blood work, and it was positive. And I was like, “oh, my God.”
Well, I mean, we were expecting it, but not expecting it.
And so Leonard had a favorite Mexican restaurant in Florida. And I called ahead and told them that we were going to come in to eat that day. There’s never a wait, but I said, “ask us to wait.” And I said, “then in a few minutes, I want you to say, ‘Kelley, party of three.’
And so they did. And he was like, what? Who’s here? Like, he thought maybe somebody from home had come to visit or something.
And I was like, Nobody’s here.
I was like, we’re three. And he was like, what?
And I said, we are three. And I touched my stomach, and he was like aww and this sweet little group of people in the corner started cheering. The waitress started cheering, everybody started cheering, and he was like, oh, my God. And he started crying. It was super sweet.
They even paid for our meal, the little table, and they had left before we were done, but the lady was like, no, they paid for it.
For a long time I had like a sign in the kitchen that said Kelley party of three. But as far as the pregnancy, all the scans were normal, blood work was normal, didn’t have diabetes or any of the other things that can pop up.
So I did go 41 weeks and five days, like way too long. It was scheduled for an induction and then we went in. They did that balloon thing to try to help you, which I don’t recommend- just painful- and it didn’t do anything. So it’s like this bulb that goes into your ( I guess we’re going to go there…) Your cervix, and it expands it to help you dilate. So it inflates and then it just sits there inflated for hours while it helps you catch up.
Then they decided to do Pitocin to try to get it going. And they were monitoring Liam’s heart and his heart rate started to spike. And then during that time, during all the things that they were trying, my water broke naturally. So then that 24 hour countdown starts and so I was having contractions and things were happening, but just he wasn’t moving anywhere, he was just like chilling.
So the doc said, hey, I think it’s time we just do a C section. So it was [not] an emergency, but it was nothing’s happening. We’re not running out of time, but we’re getting close.
For me, when we were in my room, the lights are a little bit lower. It’s kind of chill; your family’s there. You’re just like peacefully trying to do this kind of and then it’s like C section time.
And they roll you across the floor into this bright white light. There’s twelve people, they’re calling their medical actions out. They strap yo arms out like Jesus on this board, and they start giving you IV’s and the epidural and all these things. It’s like the pace quickens.
And that was like when other people I know are going to have a C section, that’s what I tell them is like, I wasn’t ready for that change of pace and it’s happening now. And so C sections are pretty quick.
Like 30 minutes later he was there. He cried like three times and then quit crying and they took him off, which I think is pretty typical, but there was like this air of something in the air. I didn’t really know what was going on at the time. I had told them that when he was born, I didn’t care about the goo. I just want him up to meet him. But that didn’t help. And they ran him around. They showed him to me and then took him off, and I was like, okay.
And so then doc’s doing the sewing up and stuff, and I’m still not getting any kind of clear information about what’s going on, but Leonard went to go be with him, and one of the technicians came out and told the doc he wasn’t breathing.
And the doc kind of looked at her like, “what are you doing? Don’t tell mom right now, because there’s nothing she can do.” And so I was like, “what’s going on?”
And he just kind of told me, like, “oh, it’s fine. Sometimes it happens, but he’s in really good hands.” And I was like, “okay.” And so there’s so much happening physically to your body that I think in that moment, I just said, okay, and just waited for myself to be sewn back up. Yeah. Can’t feel my legs. This is normal.
There wasn’t a lot of communication with me, so I did know that something was going on, but I didn’t really know what. Once I was in the room, they kind of said, “he’s not breathing”; and the Air Force Base we were on, they didn’t have all the necessary tools to take care of him, so they were going to have to take him by ambulance to Fort Walton Beach, which is just like, probably a 20 minute ambulance ride.
I was like, but I haven’t even seen him. I haven’t even touched him. Like, nothing. And so they wheeled him in one of those little glass cases in, and I was able to reach through, like, touch his little foot. And then they said, we have to go.
So they took him to Fort Walton Beach. He was on 100% life support because he just wasn’t breathing. So they ran some tests, thought that he had an infection in his lungs. One of the doctors had said he had really good results with using nitrous oxygen or nitrous oxide. I can’t remember what. And that it really helps to clear the infection really quickly. So they had some in Pensacola. Pensacola brought it. They tried it. He improved slightly.
And at the time, my mom was kind of posting some updates on Facebook about what was going on. My cousin Jamie had a son who had some heart issues when he was born. And she reached out to my mom and said, this is exactly what happened to [my son]. Everything you’re posting, like, that’s what happened. And it was his heart. And a lot of times they missed that because it will look like a lung issue.
So we told the doctors, “look, there’s a family history of heart. Can we check the heart?” And they said, “we really don’t think it’s his heart, but since they’re genetically [related], we’ll do the test.” So they do an EKG, and they don’t see anything wrong.
Fort Walton Beach was also a little bit smaller of a hospital, and so they wanted him to get to Pensacola, which was a bigger hospital. He was going to need some kind of intervention. So while he’s on his way to Pensacola, the doctor called me because I had been complaining that nobody was telling me anything.
He called and said that he reread the EKG. And he does see something on there. That is a heart condition called TAPVR. It’s just a congenital heart defect.
It’s not rare. I mean, I think they say now, like, one in 100 babies are born with a congenital heart defect.* Now, he did mention he will need open heart surgery to repair this. In the realm of open heart surgeries, this is considered like a flu. As far as sickness, this is a one and done. We will fix it. He will be in the hospital for a while to recover, but his life will be normal. It won’t be another problem.
We know how to fix it. Let’s go! I don’t feel helpless anymore because I’m getting the information. I should have probably shattered then, but it felt good to be able to call my mom and Leonard and tell them what’s going on than just being in that room.
Because when Leonard was in Fort Walton Beach and Pensacola, he was by himself, and he wasn’t asking the right questions. Bless his heart. He’s never been in a situation like this, but he wasn’t able to give me any information because he didn’t know what questions to ask.
We were running on no sleep, and I said, Mom, you got to leave me by myself and go be with him because I need somebody who can take care of this. I said, he just can’t. So she was the one who was there asking questions, and he didn’t really know what being on 100% oxygen meant. He didn’t know that meant life support.
That was hard for me to be alone, but it was more important that we get answers and that we start figuring something out. They’ve talked about-not to get super religious- but how God can hear your prayers even when you can’t speak them. And it’s probably the only time where I’ve not really been able to speak.
I was only able to cry, but in my brain, I was praying. And I remember what I said was, “I won’t be mad if you take him. I won’t understand, but I won’t hate you. And I’ll try to understand, because that’s all you can do.” That’s all I could do.
There was a wonderful chaplain that came in, because I think the nurses were like, “what is happening?” And they were like, “do you want us to call the chaplain?” And I was like, “yes, I do. Maybe the psych doc, everybody!”
And she came in and she just said a beautiful prayer, and she was able to call the other hospitals and get them communicating with me more. And she was a lady who you could tell people did what she said. She was a beautiful black lady with just like- you could see God around her, but she was so just so perfect. And she said the most perfect prayer and just knew how to take charge.
When you’re really helpless and somebody steps in like that, it’s just like, thank you, Jesus.
There’s another really great program in Gainesville, Florida, which is on the Florida Gators campus called Shand’s. And that’s where he was sent. And it oh, my gosh.
Every single moment we were in Shand’s was amazing. The room that he got when we got there was his room the entire time. It’s a whole pediatric cardiac wing that is just so impressive. Now, it did take me like 6 hours to drive there. Leonard and Liam got to fly on a little jet and get there pretty quickly, so that was good. But again, I had to wait for that BM before they would let me go.
Pitocin makes you really swollen. And I was just, oh, my God. I had like, cankles, sausage toes, like, just swollen. I had been crying, so, like, my eyes were almost swollen shut. Like, oh, I was in a state.
I started pumping. For me, the only thing I could physically do if I couldn’t be there, at least I could pump. So that became like, my life. And I was like a blue ribbon dairy cow girl. I could have fed all in northeast or northwest Florida. I was the supplier, so that felt good to be successful at something.
My mom and dad were gracious enough to get me in the car. So less than 24 hours after having the c section, I was able to leave and get in the car and go to Shands. But they wanted me to stop every 2 hours and walk around to kind of get some of that gas [out]… because they said, we just closed you up and there’s a lot of gas in your body and you’re to walk it out.
There’s so much happening in that back of that car. I mean, I was half naked, pumping, going through the toll booth, and I think we probably needed something to eat. So we were going through McDonald’s and mom’s like, “oh, my God.” I’m like, you know what? I don’t care.
Oh, because my titties were out. Because I was pumping.
I was figuring it out, and I don’t even know if I had, like, the hands free thing. So I was having to hold my stomach while we’re going over these bumps because, you know, that starts to hurt. And if you’re modest, you just kind of become not modest real quick.
When I first walk in to see him, he’s in the little incubator tray, but I talked to him, and he turns his little head to me, and his little eyes light up like, “there you are!” Because I’m the only one he’s heard for the last…ever.
And it was just like he was still on 100% oxygen, so he couldn’t really cry or anything like that. But his little eyes just kind of like: something I recognize. It was pretty great.
You know that movie Inside Out? The first scene is like your core memory, and it’s like this golden memory because it’s mom and dad and so happy and loving. That movie broke me because his first little marble was probably a blue one because it was, like, sad and pain and scary, and I remember when that movie first came out, and I was like, every other memory will be a golden one. I will make everything else so good for him. It was like a motivator, I guess.
So in the NICU, you get used to a specialist(s) coming in and just telling you updates. And he was doing so good that all of his updates were so good. So anybody wanted to come in, I’d say, “yeah, come on in, chat.” Because it was all, like, positive. So genetics came in, and I was like, okay, that’s weird, but whatever.
So genetics comes in, and she’s like, “hey, I’ve got an update. Are you good?” And I was like, “yeah, my husband’s just down getting coffee, but should I wait for him?” And she’s like, “oh, I think we’ll be okay.” And I said, “okay.” And so she sits down and she’s like, “so whenever a patient has, like, a congenital heart defect, we do a genetic screening just to kind of rule anything out to make sure there’s not anything else we should be looking for or a reason that it happened. And so we did that with Liam, and we did find something.”
And I was like, “okay.” And I’m even holding him at the time because I wasn’t able to hold him for, like, two weeks. So I think this was like the second day of even being able to hold him.
And so I was just sitting there holding him, and she said, “so we found what’s called Williams Syndrome.”
And I was like, “okay.” And bless her heart, she was very young, and we may have been the first family that she ever gave any kind of news like this to. And I hope maybe that she learned from my reaction that that wasn’t the best way to do it.
So she she starts telling me things about Williams Syndrome- that they don’t have great spatial awareness and that they’re not really going to be that great with puzzles. So he may know where Texas is, but may not really be able to put it exactly on a map that he may not be great at math. They struggle with math, and I’m thinking, ‘okay, I mean, I’m not great at math, and it’s not that important to know where Texas is. Everybody else does.’
“And when they grow up, they’re not usually able to live independently. He’ll probably always live at home with you.”
And I was like, “wait, what? Record screech. Wait a minute.”
And so I’m also two weeks postpartum, there’s so much going on, and I just lose it.
And you can see in her face, like, oh, God, what just happened? But I was just, like, confused, like, wait, he’s going to be bad at puzzles, but now he’s going to live at home forever?
So Leonard walks in and he’s like, “oh, my God, what’s happened?” Thinking, like, something’s happened with Liam. He comes in, and the lady kind of gives him a quick version of it. And his question was very dad, like, will he ever play sports?
And of course, I look at him and I’m like, “babe, it’s not even about sports anymore. She said he’s going to live at home with us. Like, we’re talking developmental delays and other heart conditions and big things.” And so it wasn’t the best way to find out.
Depending on the diagnosis, those are pretty final statements to talk about somebody. My future experiences with genetic doctors are way more positive. I really think that maybe we were the first people she ever had to tell some kind of news like that to. And I know now, like a genetic diagnosis, there could be breathing difficulties, like, there could be way more things physically to deal with or life expectancy to only be a couple of years to deal with, and that’s not the case with Williams Syndrome. So some people in the genetics world may say Williams Syndrome and be like, oh, you’ll be fine, and that may be kind of like what she was thinking.
You’re just in such a fragile, emotional, hormonal, not sleeping state- and I was just expecting another check off the list. Like, he hears, he swallows, he does this, he does that. Genetics are fine. I just wasn’t expecting a big bomb. And I told her Leonard was down the hallway, and she didn’t say, like, “oh, let’s wait for him.” She just went into it, and I think maybe she should have said, like, “just so I don’t have to go into it twice…”
There were holding restrictions on him because he did open heart surgery, and then his chest was left open for like, four to seven days, and then they close it- [there’s] swelling, and lots of stuff happening for, like, eight weeks. You can’t lift him by the armpits. Like, you have to scoop him underneath head and butt and lift him up. So you don’t want any pressure on that.
Where you would normally lean a baby on your chest and all their weight is on their chest and your chest- you couldn’t do that with him. For the lucky people who that baby just popped on that tit and went to town, that’s great. But that was not our experience.
For a baby to latch, they have to breathe, suck, swallow, all at the same time. And that takes a lot of spatial awareness. It also takes a lot of tone and muscles in your cheeks to suck and they have to know where to put their tongue. So suck, swallow, breathe is really hard where a bottle should take 30 minutes, it took him like an hour and a half. And then you’re feeding him every 3 hours.
In an hour you’re doing it again. And it was a fight. He had silent reflux, it was hard. And then he wasn’t gaining weight. So we had to supplement with formula. Yeah, it was a battle. We went a year and a month doing that and then he got a violent stomach bug that he was unable to get over, which put him in the hospital and he just wasn’t able to eat or tolerate his formula. And we were already missing those weight milestones.
And his PCP had talked about a G-button, which is like basically a port in your stomach that you are able to eat from there if you’re not able to eat by mouth. And she’s like, “we’re not there yet, but we should talk about it because if this continues to trend, that might be something that we look at to help him get the nutrition that he needs.”
While we were in the hospital, they did like an acid probe test and they were like, yeah, he’s got like horrible, horrible reflux. And they said if we do a G button we should probably do what’s called a fundoplication, which is where they sew the upper part of the stomach to the bottom of your esophagus and they tie it tight so that acid isn’t able to come up into your throat. He was not vomiting a lot. He was just not eating and arching his back and lots of crying. He would not sleep. Just all the problems, just all of it.
And they said, we really think a lot of it is due to the acid reflux. Lots of Williams Syndrome kids have trouble sleeping… so they have a deficiency in melatonin and they’re just not always able to get into that really good REM sleep where they can really calm down.
It’s a hard decision to say, “we’re going to do a G button.” It was pretty scary. But he had been in feeding therapy for months and things were not getting easier. We were trying baby food, we were trying all these things. But he just was not progressing, and he wasn’t gaining weight, and he wasn’t sleeping. And all these things wrap around nutrition. And if they’re not getting the proper nutrition or sleep, then they’re not going to be successful in other areas.
I truly felt that for the last year and month, I had done absolutely everything to get that kid to eat orally. We were doing all the things the therapist told us. We were completely exhausted. I had such a complex about food and sleep because I dreaded every bottle that he was going to take. I dreaded every night that he was going to go to bed and not sleep.
And when I say not sleep, I mean this kid would sleep, like, maybe 20 minutes every couple of hours. I don’t know how he got through it, and I don’t know how I got through it. We would just stay up and rock him. And I would cry, silently cry while I held him, because Leonard’s job took him to travel, like, Sunday through Thursday most of the time. And so I was just, like, alone and not sleeping.
And I remember one time my mom came up to visit and help, and she found a spoon in my freezer. And she was like, “dumb mom brain… why’d you leave the spoon in the freezer?” I was like, “oh, no, leave it there.” And she’s like, “why?” And I was like, “well, sometimes to measure out Liam’s medicines, I’ve cried so much the day before that my eyes are swollen shut. And so I would hold a frozen spoon on my eyeballs that I could see to measure his meds and stuff.”
And my mom, I could just see her face, like, oh, my God. And I was like, that’s how bad it is. It’s so bad. And she had come up because I was having problems, like finishing sentences. My vision was messed up. So I went to the doctor, and the doctor called that night and was like, “why did you stop taking your thyroid medicine?” And I was like, “I don’t take thyroid medicine. I didn’t stop doing anything.” And he was like, “well, I’ve called you in a prescription, and you need to go get it now. Take it now, and take it every day” and this and that.
I never had thyroid problems, but he said because I was so depleted of sleep, it controls all your metabolic functions. So it’s like I was just basically destroying myself without sleep. So that’s still a thing I have to deal with because I wasn’t taking care of myself. And there’s probably nothing really I could have done different[ly].
Self care is talked about, but it’s like, sure, you’re supposed to, but there’s so many times when you’re taking care of those kids, you can’t! You literally have to push the kid away while you’re wiping your butt. So while I would like to pass along the advice to special needs moms, remember to take care of yourself, I recognize that that is just a loaded statement and not full of any actual way to do it.
Now, I will say you have to learn to say yes to help. Everything in the world tells you you should be able to do this by yourself and do it well. People offer help and you say no. And why do we say no? I need freaking help! And even if it’s to come do my laundry, clean my kitchen, bring me dinner, why do we say no to meals? Somebody loves you enough to do that for you, and you’re going to take that away from them. And that’s what I had to learn, is that I was taking that joy away from them blessing me.
You’re not going to get through this without help. So I started accepting help and things got better. When Liam was born and we were in the hospital for the heart surgery, that was like right at a month. Don’t forget, Leonard got out of the Air Force. We were still in the hospital when it was time for us to leave our base housing. And I hadn’t been home for a month, so I hadn’t packed anything.
So just imagine right now, strangers go into your home and they pack your underwear, they pack your trash can. They’re packing everything and they’re packing it as is. So if you got a hairbrush in the kitchen, when you unbox your kitchen boxes, there’s your hairbrush. I mean, it was just chaos. It was chaos. And I had to just let a stranger pack my underwear in my underwear drawer. Luckily, I did have my mom go get my valuables, but it was just like… I didn’t care about that. I mean, I did a little bit, but I didn’t care about that because I was in the hospital with my new baby.
That was my season of just putting it in God’s hands. It’s going to work out. All my stuff’s going to get packed up and moved to where I need it to be. Is it the way I would have done it? Absolutely not. But did it get there?
There was a long time where I felt like I was just circling the drain, just getting by by the minute. I did finally get some help. So a friend of ours was kind of looking to move out of her parents house, and she hadn’t really done much outside of her mom and dad’s house, and so they kind of felt like this would be a great transition to before she lives independently, kind of live with us, we can kind of help her out.
And so we kind of worked out a deal, like she could live with us and we would pay her a little bit to help me at night. With Liam, that was a game changer, was being able to actually sleep. So at first I kind of had her helping during the day so that I could get other stuff done, unpack the house and do all those things. But then I still wasn’t sleeping, so, like, yeah, my house was clean, but I was still crazy.
She was a night owl anyway. “Why don’t you just let me do like, 8pm until 5 in the morning or like nine to six or something like that?” And she’s like, “if he gets up, I’ll get up, and we’ll do it that way.” And I said, “okay.” And she did.
Within a couple of days, I felt more capable of clarity. And Leonard was in his job for a little while, and he realized that a traveling position is not going to be a long term thing. Liam started physical therapy, occupational therapy, feeding therapy, speech therapy, like all the therapies, and they come to your home and do all of it. And so on top of everything, you’re going crazy.
There’s all these people in your house all the time, so you feel responsible to at least make it look like you know what you’re doing and that you’re cleaned up. Not that they really care, but you care.
And there’s so much to learn when you get a diagnosis like that. Of course, we didn’t know what Williams Syndrome was. We didn’t know what any of it was, but it becomes your whole life, like, immediately- and then they’ll tell you, don’t Google it.
Of course I googled it. So I think spectrum is an outdated term now, but for a lack of a better word, there’s a spectrum in everything. And just like Williams Syndrome, there’s different circles of different abilities and things that overlap. And not every Williams Syndrome kid struggles with oral abilities. Some of them eat just fine. Not all of them have open heart surgery. In fact, the surgery that Liam had was not related to Williams Syndrome at all. He has other heart conditions that are stable, that are related to Williams Syndrome.
A lot of Williams Syndrome kids have an Autism diagnosis, too. A lot of them are like their ability is speech, to carry on a conversation and to ask questions, and their curiosity is one of their strengths. Liam has Apraxia, and so he’s just now, at age seven, starting to use language and words and sentences. So it does feel like within the Williams Syndrome world that we’ve kind of been hit by all the little tick marks. They might not all have this, but he seems to kind of have all of this.
It’s been, I think, a little bit longer of a journey because we’re having to deal with just a little bit more. So it’s even kind of made him delayed on when a WS kid would typically hit this milestone- he hasn’t yet. He eventually does, but there’s kind of a loneliness, too, in that where you’re already kind of, like, isolated when you get that kind of diagnosis but at least you tried to compare to WS kids, and he was still, like, not meeting those milestones.
And so it was tough when that was happening, because we were just waiting for the best parts of Williams Syndrome, and even that wasn’t happening, and so that was hard. He didn’t sit independently ‘till he was one. He didn’t walk independently until he was three. And now that he’s seven, I would say in the last year or two, we are starting to hear true words from him. So his retentive language is great.
He understands everything, but he’s just not able to verbally express himself. But now he is, and I was talking to his teachers the other day, like, they’re just floored. It’s just broken open in the last year. It’s almost like getting to meet him for the first time. I thought, just based on his nonverbal communication, like, what he was into fans and different things like that, but being able to hear him tell me… in fact, it happened this week.
I asked him, “what did you do at school today?” And the very first time he’s ever been able to answer me without the teacher first telling me and then me being able to kind of understand it. The teacher didn’t tell me. I said, “what did you do at school today?” And he said, “recess.” “Did you have recess today?” And he said, “swinging. Fast. Swinging.” And I knew that he got to swing fast on the playground today at recess. It was incredible. It was just like… it was just amazing.
And that’s happening everywhere with what he wants to eat, that’s still a journey. But what he wants to do, he loves Home Depot. He wants to take his sister Ava to the Guitar Center. He goes to play on the cymbals. All that’s been there. I remember when he first started saying Daddy, he was so proud of himself. You can tell in his face when we repeat back to him what he’s saying, he’s just like, “yes, finally!” And with Apraxia, he’s always spoken, but it was never close to those words. It was just kind of a jumble. His inflection might be right. He would try to use his hands, and then, of course, if it was at the house, he could bring you to it.
But there was a lot of it was like charades for seven years.
I’m so good at charades.
It’s sentences that he’s putting together. He really loves using the washing machine. And so he came up to me the other day, and he was like, “want to wash Avey clothes?” He wanted to wash Ava’s clothes. So you darn right I got up and we washed Ava’s clothes. Just those tiny little things are so good.
I didn’t think I was a very selfish person, but I think it truly makes you change your focus. Of course it’s your kids, but when your kids can’t eat, can’t speak, like, need help doing all these things, I don’t know, it just kind of becomes this battle that you have to win. You just help them fight.
There’s no difference between me and somebody who doesn’t have a special needs kid. It just happened to us. And you adapt, and you do everything you can to take care of your kid in the best way that you can.
You hear a lot like, you’re so strong, and I couldn’t do it.
Oh, yeah, girl. Yeah, you can do it. You would do it. Everybody would do it. It just happened to happen to us.
I learned how much you can do without sleep and maybe where that line should have been drawn, where you need to ask for help before it destroys you physically, emotionally. Maybe you could call it mania. I was toeing the line of maybe actually needing psychiatric help when my mom came up that time. There was just so much going on. Me and Leonard were arguing, and he’ll tell you I was arguing about things that didn’t even happen. I was, like, yelling at him for things that he didn’t even do. And it was just kind of this crazy talk, and I can’t explain it. I just wasn’t functioning anymore.
Two weeks after I started taking the thyroid medication, I started coming back back to myself, you know, like, I still wasn’t sleeping as much, but I didn’t feel as out of control. When you’re in that out of control-ness, you don’t recognize you’re there. And that’s where it’s really important.
You got to have a tribe or whatever… but for other people to see that and step in. While he was in the hospital, and then even after, when Leonard called [my mom] and said, “I don’t know what to do with her. She’s not making sense, and this is not okay.” And I wasn’t mad. I needed help, and I couldn’t see it. I couldn’t even ask for it because I was just in such a weird state.
It feels confusing and disorienting, but you’re also trying to still justify doing it on your own or that you’re okay or move forward, or you’re not the one who needs the help like Liam does and trying not to kind of be a burden. Or it got so confusing, and it’s even hard to kind of, like, remember being like that because it’s such a weird way to feel that way but not realize you’re feeling that way.
I physically looked a wreck and just constant crying. I mean, looking back, I probably could have used some emotional support then postpartum depression, dealing with that new journey.
I didn’t hear this till later: that it’s okay to be grieving the child that you did not have while hopelessly loving and excited about the one that you do have.
And those two big emotions to have at the same time can be really hard to deal with. I still haven’t really gotten psychiatric help or whatever you call it. I mean, I think everybody does [need it], really. Like, I’ve talked to more people who have been through therapy, and it’s like one of the therapists told them if people just knew to come before they’re in a crazy storm, everybody would be in such a better position. It’s on my list to do.
The question I get a lot is, “is it hereditary?” And it’s not. It’s a small deletion of genes on chromosome seven. They also compare it to the opposite of Autism, which I think may not be the best way to describe it now because there’s so much more we’re learning about Autism, that it’s not fair to put Autism in just this one little box and say Williams Syndrome is the opposite.
But Williams Syndrome kids have better eye contact, better verbal skills, but it’s very surface level. So they may not be able to get into deep conversations of why and everybody’s my friend. I love everybody, but they have a hard time making a true emotional, personal kind of connection sometimes. And like with Liam, we struggle with the eating, we struggle with the speaking. It really looks different for everybody.
The second genetics visit that we had, which was like in an office, and I remember this new guy said, the first thing you should know about Liam is that he is more ‘Liam’ than he is ‘Williams Syndrome’.
And that just really helped me change perspective, I guess, of it’s all Williams Syndrome. The reason anything is happening is Williams Syndrome, and he’s like, “he’s still going to be Liam. He’s still going to be funny because he’s Liam. He’s still going to be this way because he got it from Dad or that way because he got it from Mom.”
And to remember that he’s more Liam than he is Williams Syndrome, I think that’s one of the best pieces of advice because now in the special needs community, it’s like- person first language. So you would say, “I have a son named Liam and he has Williams Syndrome”. Like it’s person first.
I don’t know, that was just comforting to hear. He’s really goofy. He really likes attention, but he also really wants you to be excited about the ceiling fan or music. He really loves music. So they respond to music almost like on a visceral level. So when he was younger, we couldn’t play Twinkle, Twinkle, Little Star or any kind of melodic music because he would cry, he would break down crying. And it happened a lot.
Like, in the grocery store, we would just be cruising along. And since we’re in Texas, they play a lot of country music. And he’d be just like, wailing. And strangers would be like, “oh, that poor baby”. And I’m like, “it’s just the song”. He’s just such a joy, and he holds that joy through everything he has to do.
How my view of Liam has maybe changed would be I never really thought that he couldn’t do it. So I don’t want to say, like, he surprised me, because he hasn’t really surprised me, because I’ve always thought-he’ll walk, he’ll crawl, he’ll talk- and it eventually happens.
But the way that he has been able to stay a happy kid while having to do therapy two or three times a week and constantly I mean… every meal is a chore. Everything he wants to try to say is hard, just like everything is hard. And maybe he hasn’t complained because he hasn’t been able to say those complaining words, but he definitely can still let us know that he’s not happy.
And between ages two and three, that was hitting his head on hard objects. But he still just has so much happiness and joy in what I see as, like, a difficult life.
If Liam’s doing it, you can do it. So suck it up, buttercup.
For many years, I had feet in cement saying, we’re not having another child. And we did want multiple children. We did. But when you have a child with special needs, there’s a lot of them that stays an infant. We’ve begun the potty training process, but he’s still in diapers, and they still don’t sleep, like an infant, and they still don’t eat. Like, there’s a lot of things that haven’t changed for us.
That’s why you don’t always have a kid immediately after having a baby, because you’re a little busy. And so there were moments where I would be like, okay, he’s violently banging his head, and we’re having this meltdown in Target. What would I do if I had another kid right now? I physically couldn’t do it. I don’t think it would have been fair emotionally. I wouldn’t have been able to attend to another kiddo. And his future was just really unclear as to what kind of needs he would [have].
And a lot of times when you have a kid with special needs, the first thing you’ll hear is, “well, they need to have a sibling and they need to because what happens when you pass on and they’re not able to take care of themselves?” Or “having a friend helps them develop mentally because they’re watching them meet those milestones and it will help them.”
And to me, that’s not a reason to have a kid. Man you have to have the kid because you want another child. You want to love and make another baby to be in your family, because it is on your heart to grow your family. And for many years, that just wasn’t on my heart. It was on Leonard’s. He’d have like three or four by now if it was him. But it wasn’t in my mental physical capacity to be able to do it. But I did tell Leonard, I said “I’ll pray on it.”
I said “I’ll pray for my heart to change.” I said, “but I don’t think it’s changing.” And then Liam steadily improved. And I remember we were outside playing in the backyard, and Liam was just running around having a blast. And it hit me, ‘man, it would be so cool to have just another one out here playing around.’ Not that that’s exactly the right way to have another baby either, but for me, that’s when my heart started to change, of ‘I want another child because I want another child’.
So that’s when we talked about it a little bit more. And I knew that I would still need help because Liam’s still in therapy twice a week and lots of stuff going on. And my parents said if we ever decided to have another kiddo, that they would move closer and help. And they did. And so that was another big decision, was to know that I would have help.
We decided, and then two tries later, we were pregnant. And I thought, ‘what did I do?’ Wait a minute! I thought I was going to have, like, eight months! I was going to get real skinny. I was going to wean off of some of these medications I don’t need to be taking. And there were these things I was going to plan to do. I had some back pain, so I take prescribed -as I should- narcotics, antidepressants, I don’t care if everybody knows. Do clean, do all the things you’re supposed to do.
And so I just had to, like, cold turkey. I did. I cold turkey-d the antidepressants, the pain medication, and caffeine. And girl, I don’t know why I did that, but after a couple of weeks, months or so, it wasn’t too bad. But I was still nauseous and coffee still didn’t taste good. I still had some vomiting, but it was more like uncomfortable this time because I was older.
And they call it a geriatric pregnancy. Like, could that be any more smack in the face? They should just call it old lady pregnant, if you’re going to go that far. Let’s just really dress it up!
We weren’t worried about another child with specifically Williams Syndrome. But after you do have a kid with anything, you know, it’s a possibility. And so that was another thing we talked about, was, what if we have another kid who needs extra help? And I just thought, wouldn’t we be the perfect people?
Because we know how the system works and we know what it would take. Obviously, I would take away any kind of pain or trouble for him. I would take away things that make his life harder, but to do that would also be to change him. I wouldn’t change anything about Liam because he’s amazing. But would I make his life easier? Absolutely.
But we had already known what we’re capable of, and we just trusted that we’ll get the kid we’re supposed to get. And we sure did. She’s so perfect. I mean, she’s just been a blessing and an enhancement to the family in every way. And, yes, it has been helpful with Liam because he didn’t like baths, but now that he can help give Ava a bath, he’s okay with it.
There’s just all these different little Easter eggs that pop up that are like, wow, that I didn’t let myself think about for the longest time because I thought you’re immediately giving that child a burden.
Our neighbor across the street had an older daughter and then a 21 year old daughter who was her warrior, like, 100%. She’ll never live in a home. She’s living with me. And I talked to her a few times, like, how did your mom raise you to be this way? Because it affects who you marry. It affects the trajectory of your life, because it just does.
And she’s like, “I don’t know.” She’s like, “I just grew up loving her, and why would I be any other way?”
When somebody wants to help you, saying no takes away that blessing that they get from doing for you. It was kind of like, but what if she grows up and chooses to do this? What if she wants to be that kind of person? I’m not letting her be that kind of person… to stop looking at it in such the negative way and just letting it happen. If she grows up and she doesn’t want to take care of Liam, that’s fine, too. That’s her choice. It’s not something we’re going to force on her. But if she grows up and she loves him and she wants to do that, that’s her choice, too.
And to not have another kid is to still take that choice away. And so that’s why for so long, those were the reasons to have a kid. And I was like, that’s not a reason to have a kid. That’s not fair. That’s not it for me. And I wanted it to be because we truly wanted another baby, like another human who has choices. And then that happened.
And of course, Leonard’s like, okay, so when’s the other one. I’m, like, turning 39 this year, so I don’t know if that’s in my cards. He’s like, well, you said that before. And I was like, yeah, but I think I really mean it this time. So he wants to adopt. So I’ve told him I’ll pray about that to see if my heart changes.
*1 in 100 babies are born with a congenital heart condition according to the March of Dimes.
Check out the Williams Syndrome Association to learn more about WS. Their big fundraiser is the Walk for Williams where you can join a walk or donate.
The Mayo Clinic explains TAPVR here.
Apraxia Kids has more information about this specific motor speech disorder.
To rent the movie Inside Out, click here: Inside Out Movie
All content and information on this blog is for informational and educational purposes only and does not constitute medical advice. Always consult your doctor for advice on your particular medical situation.