Tiffany Matthews-Lay and Donna Curtis

00:02 My name is Tiffany Tiffany matthews-lay. I am 46 years old. Today's date is Saturday May 29th. 2021. I am in Baltimore, Maryland. My conversation partner is my aunt Donna Curtis and she is my aunt.

00:23 My name is Donna. Curtis. My age is 69. Today's date is Saturday May 29th. 2021. I'm in Baltimore, Maryland. In fortnite is Tiffany matthews-lay and she's my niece.

00:40 Good morning, Tiffany.

00:48 Conversation. I really wanted to talk about Nasir, who is my son? Who has special needs, but I can go on and on about Nasir and his tail. Is there a 16 years old? But I really wanted to gain some information and perspective from my mom's point of view. So my mom passed away May 6th a year ago 2020. I'm and I would really like to have this conversation with her to just gain some perspective on what it was like to nurse sure. I'm a grandchild with special needs. But of course, she's not here to have that conversation and I selected you because you are the next best option. You were her little sister. You were her best friend and I ate, I thought you would be able to give me a little perspective on what it.

01:48 Like to nurture him for the past 16 years. So just give a little background into what we had been dealing with. So, the Seer has a rare syndrome, call Kabuki syndrome, and we bought him home from Texas to Baltimore at two months of age. And so when we had anesthesia, are there was a lot of what is unknown at the time. And so I quit my job. I took a picky percent Pate. I packed him up and I asked my mom, Mom. We have Nasir. If I leave touches, will you help me? And she said, absolutely. And so, from that point on for the next two years. She was at my house 6:30, every morning cook, clean didn't Audrey. And she pretty much was there for the next sixteen years. So from your perspective and knowing what, you know, of our experience, what you know of my mom and her experience. Can you give some perspective on what it was?

02:48 Like as a grandparent to a kid with special needs.

02:54 Well, first of all, I remember coming to Houston after. Now, she was bored and it just so happened. I was coming from New York and she was coming from Baltimore. We happened to meet at the same time. And so we came to the hospital and I'll never forget the look on her face when she saw a nozzy for the first.

03:18 Joy in her face. And I got to tell you every day thereafter, when I would ask her. How can I see today? She would say, without any polling. He is the love of my life. And so he was her third grandchild. But I mean, I know she didn't pick favorites, but she lit up whenever his name came up and everybody in the family knew that that was because, you know, she she was with Darrell and I hand in hand, you know, through all of his, his challenges through all of his successes she was there. So so I can I can see that. I can definitely see that.

04:10 What do you think was some of her happiest times with him? I can tell you that for me, you know, the theory that huge sports fan. And so, you know, a lot of the diagnosis was we don't know if or when he Lie by mouth. We don't know if or when he'll talk is or when he'll walk. And so whenever you know, he did something no matter how big or small she celebrated in the series, a huge sports fan. So I remember the first time he was able to stay Ben Roethlisberger that brought her so much joy that he could pronounce been last name and then follow it up with how amazing he was and all of his dad's. And, and all of that. So that brought her shared Joy. So, from your lip, what are some of the happiest times that she shared with Nasir?

05:06 I think an umbrella tip to sport. Remember the time in school.

05:12 Supposed to be the narrator for the sports section on the loudspeaker in the morning session and you known as you can go on and fan item about sports and he knows the steps and he knows the players and he knows the team and so that morning we were all waiting to see how well he did and they turned on the mic.

05:36 And he said nothing, crickets. Nothing. We couldn't believe it was the same child. Because once he started talking, you know, I mean at first they didn't know if you would talk and then once he started talkin, there was no stopping them. So as you know, and and she had so much patience with them. She said, let them talk. I don't care how long it took to all. I got to do is know, I do go out from time to time and he's off and running. So I think that was one of her biggest Joys. And another one was when he started eating by mouth in bored, her to tears, as she was just so grateful. And your mom was a prayer Warrior, she and her church members trade for that child like nobody's business. So, do those are the two biggest things. I remember about her joists that that you spoke of often.

06:34 That is very true.

06:40 But you are absolutely correct. When the spotlight is on him. He freezes and it's like Cricket. He has nothing to say. So, you know, my mom was an artist. What will let me? Let me back up a bit.

06:55 Nasir had a feeding tube until he was about 545. And so it, we spent two months in an inpatient, feeding program at Kennedy Krieger. They taught him how to be by mouth. And, you know, my mom, we are successful at the family. My husband Darrell and the deer & I in large part because of my mother, our lives did not skip a beat. When we had Nasir Nasir needed. He has so many therapy speech, therapy, otpt feeding therapy, and my husband. I work full time. So we did not skip a beat. Our career did not suffer. We were at, we were able to move forward and advance in their careers and marriage didn't stop. And we were able to continue to work on ourselves as friends and partners in large part due to my mom because my mom was able to come in on filling the gap.

07:55 Buy guidance, give us perspective as it related to in this year. So circling back on your thoughts about him in the feeding program. You know, that was a very intense time for our family because we were in an inpatient program for two months. We lived at Kennedy Krieger. So I literally slept there at night, went to work. My mommy lead me in the morning. So yes, that did. That was a very pivotal time for us as a parent, raising him. Because when we came there, he came with a feeding tube when we left, you know, we left without the feeding. So you're absolutely correct. She was thrilled. That was another one of his successes that we could be two crossed off. So, yeah, thanks for that. Reminder, something else. I want to touch you in a bit is. So my mom was an artist. She was created. My mother was a professional opera singer. So anything that her grandkids do in the Arts around

08:55 Really made her light up and so you don't disappear wanted to try his hand at being a thespian. So we said, okay, we're all in. You want to participate in the school play. Let's go for it. So, you know, my husband and I, you know, let him stay after school for brought her school, you know, for months at a time and we're having long days and, you know, he's all wet and he's coming home, and he is reciting his lines and he can't wait until the showtime. And Nana is what he he called. My mom Nana is going to be there and, you know, is going to be great. So we we we prepare in the family there. And so we had a tradition that the first night my husband, I would go. And the second night my mom and my aunt thought it would go. So the first night my husband, I go and you know, it's happened if there to get his line and once again, lights camera action, there goes missing your Spotlight is Cricket. So for months.

09:55 It's of cheering and planning and preparation. He gets on stage and there's nothing. So I would like to hear from you what my mother's perspective was when she's there. She's ready to see him acting giving it all and then

10:16 On the way to take it to school and we had to leave early because he had, you know, he had to be ready to go on stage. So already on the way there. He said, I don't know if

10:37 And I know all the way to school, we had to come to you, no problem and prompt them. And, you know, it's kind of like get them in the right frame of mind. And so we thought we had done a decent job, you know, he had stop saying, I don't want to do it today. And we finally got him there and of course, being a social butterfly that he is. He was flitting from friend to friend. Just trying on, you know, great conversations with his classmates and his other thespians. And Tom, the turkey came up there was not even his head was looking around and he wasn't satisfied until he saw a Nana and then he zeroed in on Nana and that was pretty much the end of his poop.

11:36 Oh, yeah, that was great. Right Moving On. We tried ice skating ice skating like a stick in a pond. You know, he got home. He was amazing. They like the next two weeks and, you know, I'm miserable, because it's 7 in the morning. It is 30 degrees below in the, in the ice rink, but not as he wants to do this.

12:14 Ice skate and once again, it's showtime. So he gets on the eyes. We're ready to play the game and then it's like this are, what are you doing? And he's just standing in the middle of the eye, is looking for his friends, consoling. Those were crying. I'm like, oh my God. Oh my God, I come home and I'll tell my mom about it and she's like, well Tiffany, you know, what else? Did you expect? This is what he does on his own time to let him sit around. He'll be fine to change the topic of little bit. We have had it and I'm going to try to make this a little late, but I do want to talk about this a little bit. So we've had quite a few challenges but we've also had quite a few very scary moments. So several years ago and this year started having seizures. And so there was one time in particular, you know, my mom is really

13:15 I can be very high-strung. And so for me, my mom was my calm. She was my voice of reason. She could settle me down and give me perspective. I'm so that was a situation where that there had a seizure. A really, really bad one. It was one of his first and we were in John Hopkins, emergency room and he stopped breathing on it. Pretty much at this point. He went into respiratory arrest, and that night we were on life support and even through that, my mom was there with me, but she always brought a sense of quiet, silent, understanding, peace. Just having her there. I knew it was going to be okay. It was in whatever happened. It was going to be. Okay, simply because she was there, her energy told me. We're going to get through it. Don't you. Worry about it? And I think a lot of

14:15 In large part came from her relationship that she has with God. My mom was a very religious, very spiritual woman, spiritual woman, and that energy translated. And in that moment. That's what I needed. And so through the years. I have learned to lean on that energy that he passed on to me at those times of extreme, worry extreme doubts o on Donna from your perspective. I don't know if you had many conversations with her, as it relates to some of our more challenging time, but can you speak to that a little bit, maybe something she shared with you or, you know what, you know of her and how she

15:06 How she performed in those moments?

15:11 Well, she she Not only was my big sister. She was all her outfits. That's so even when my mom passed. I know it was as painful for her as it was with the spirit to speak up young age when she was only 47 when she had that same spirit. And so, you know what time to like, and I could see that it carried throughout.

15:40 United Hospital and went through all of that trauma. She was a rock, even when she called me to tell me what was going on. You could tell that, you know, it was a controlled.

15:58 Yeah, but she never wavered because she knew that you and Darrell needed her and you know, that's just who she was.

16:10 Very interesting.

16:15 Is there anything you do? My mom's no longer here. And, you know, this fear asked about her frequently. He he he understands that she's in heaven, but he's handling it very well. Very, very well, and I'm happy about that because it's helping me to get through the pain of her loss.

16:39 Is there anything that you if she could tell him one thing right now? What would it be?

16:49 In her absence.

16:52 I think an end unit and you know this as well as I do whenever knives, he got mischievous or whenever he started to you know, how he can became kind of like antagonize and let you know and ask teenagers do she would say Nazi do I have to whisper in your ear known and please don't whisper in my ear. So I tell you, I don't know what Nana was saying, but he didn't want to hear the whisper, whatever that was. So Tiffany told me a couple months ago. He said, so who you going to call now on Donna?

17:33 So I thought that was quite funny because I don't know what he thinks I'm going to do. But, you know, I'm not mad. And God knows she never told me what she whispered, but whatever it was, it worked out. So, whenever I need him to behave or do the right thing, I don't know, that, Nana is going to work now, and get Tiffany. He did also mention. He did also mention he say, I miss Nana and, and Tiffany say, I know you do cuz I do too, he say, I just wish I could call it and have it on the phone and I thought that was so so touching. Yes. Yes. Yes. Yes.

18:23 So,

18:26 One of the things that my mom, what is the parenting advice and she gave me very early on, you know?

18:35 Parents him as you would parent any other child, you know he is.

18:45 Raise him like you would any other child. And I think that was one of the best pieces of advice that she gave us because Donuts are knows. He has special needs that really doesn't mean much to him. So I remember at one point I may he was maybe about 8 or 9 and he asked me, he said, you know, my why do I have special needs? And I said, because you're a special kid and he said, okay. And he just went on, you know, what, the rest of this day, like, but it's no big deal so you don't end that moment. I called my mom and I said, you know, I had that response because of some of the advice that she gave me. She's like Tiffany don't make it a big deal. It's not a big deal if he is who he is. He's very unique and we loved his uniqueness. So, you know, integrating that into our family, our family is, we have a

19:45 Close knit family. So my cousins are more like my siblings and my aunts and uncles are more like, you know, extra parents that I have. And so even in our family Dynamic mystere is one of the one of the kids and that in large part came from, from my mom and in the direction that we got from her very early on.

20:08 So. Is there anything else that you can that you can think of that? You want to add? My sister was also an educator and she and so education was huge for her. And so nausea with his challenges with the with the public school system. It just wasn't working for him. So Tiffany and Darrell had to go to bed, to get them to end him. The education that he needs and deserves and I can I'll never forget the day. My sister came to me and she said, Donna, I am so proud of Tiffany and Darrell because they are the best Advocates he could ever hope. For she said, it just brings joy to my heart to know that that child is being advocated for in the way he deserves. So, you know, and

21:08 I want to tell them both that you know, how proud I am of them because because

21:14 They are doing a beautiful job and she acknowledged it and I'm sure being the spirit that you she was. She let them know that and she did. And I'm speaking of pivotal point in our child-rearing advocating for him from an academic standpoint. Was another one of our challenges.

21:37 It was very difficult. And again, my mom was there with us every step of the way as an educator providing guidance, providing of expectation that what he needs, what his academic environment should look. Like, I'm just getting up that by Saint, you know what to ask for, how to prestige. So she she was very, very instrumental in getting us to the point where he is now. He actually loves his is academic environment and it is indeed the best environment for him. But, you know, another proud daughter moment was so again, because of my mom, I was able to deploy as an army, civilian to Iraq, and Afghanistan for 3 here. So, I did three, one-year deployment in the sea was very young at the time. And so, of course, I'm on the other part in the other part of the world. And so, the Seer had an IEP

22:37 So, of course, you know, I'm in in a war zone, but regardless, I am not going to miss this year's IP. And so, you know, I set my alarm clock to get up in the middle of the night. And, you know, I participated on his IP called a, my mom happen to be participating from Stateside. And so, you know, we had the meeting, we ran the meeting, we came up with his goals and end-all of everything that goes, with an IEP meeting. And so, when I came home from that tour, you know, months later, I had a conversation with my mother. And she said, Tiffany, you made me so proud of just that, you know, you were in the war though. You were, you know, working as an engineer and in, in support of, you know, the wars in Iraq and Afghanistan. And you took the time to call in to the Sears IP meeting. I was so proud of you the way you ran them meeting your focus. So that was another one of those moments.

23:37 That we shared that sheep. She actually shared how proud she was in that moment. So.

23:48 Actually, another moment that I can think of is just, you know, some of our family traditions that we had that she was there. And you know, the way she was just so proud of him and his growth and and I recall one of our most recent family trips was when we went to Myrtle Beach and we went to Myrtle Beach with the family. And you know, she and Astaire got to spend some good quality time together and she actually went down to the beach. That was huge for her because it was pretty hot. It was a long walk for her and those with shoot, you know, she was hurt, her health was failing and so, you know to participate in some family events became a struggle for her, but she really dug deep. He wanted to spend that quality time with her siblings and with her.

24:43 Grandchild on the beach. And so we have photos of them on the beach and that, that was one of our last family moments together, but that that was really, really special.

24:54 Can you think of any others Christmas time and we have passed anyone's around children, and their children every year since they pick the biggest tree on the line, to dragon to the house. And you know, what her husband was kicking and screaming, but she insisted on getting the biggest one. So, her mom had to come over and help her to, to shape the tree and cut it down and trim. And, and, and just make it presentable, so that it fit in the corner. That's Tiffany usually shoved it into. But, you know, she made it beautiful. And so this year for the first time.

25:46 Tiffany is already decorated it. But with all the decorations that you have more than half of us still in the box. It was terrible enough that participate just wanted to to know it was going on and that family was there to help you do it. So, you know, that's why I'm sure that will warm your mom's house because it's Christmas so special for all of us.

26:31 Taking the Christmas tree, but the disaster is the disaster. So, you know, he hates it. You know, it's cold. I'm indecisive. The tree is always too big for him to carry and if there is always a family fight. Okay, so my mom comes over and at once again, she sort of that'll help battle the storm and I think it gives Nasir some peace that. Okay. This is a disaster right now, but when Nana gets here is going to work out, work out. So, you know, every December 1st Saturday in December, or the first weekend is when we would decorate the tree. So this year, you know, this was our first Christmas without her and it was just so somber. I mean, the we were looking at each other like okay, let's do this, but the stick that

27:20 I'm going to decorate the tree that I know how to decorate, and I really don't know. He was right. And so we got it up but Donna, when you volunteered to come over and help us, I think he gave us all the sense of relief because I tried, like you said, I tried. But when I step back and look at that tree iced up. There was like, no everything in the house, just wasn't it? Just wasn't the same. It. It just wasn't the same as. So when you came over just you being here, helping us pull the tree together, just you because it's family time for us. It is really, really help us. It's a really start our holiday season this year. This was a tough one. This was a very difficult one, bill here with you. And knowing that, you know, us being together all of them. Really, really because you're one of the first ones to get

28:20 You know, Joy Christmas Eve. So it put me in a in a better track for the coming season cuz like you my spiritual bit down to cuz it was our first Christmas without her. And, you know, we baked cookies. We we we we we just got together to just be together. You don't forget no reason for you know weekend.

28:50 It was.

28:52 It made me feel good to know that that the time we spent together was so helpful for all of us.

29:02 So, you know, what was so ironic about that was Christmas of 2019. You were here. Yes, and so it was really ironic cuz I went back and got some photos of that time and I'm like, who would have thought? Because usually, my mom and I did that too. That's something that we did together and you didn't and I didn't, you know, that I can see over the past couple of years and I think it was because you knew that my mom's health was deteriorating, right? She just couldn't do it anymore. And so you sort of became more of the matriarch of the family like you started coming to the Forefront.

30:02 Getting us together, you know, sort of advising and guiding. Did you know that that was happening or no? I didn't notice. I didn't know that was happening. But I saw something else happening in this message, you with your mother's relationship with me because your mother and I was so, so close. We had children at the same time when, you know, and so we share the same thing over and over and I noticed 20, and maybe for the last year and a half or so, you'll have to withdrawal it away from me and my sister how very, very close they were and how devastated her younger sister was when, when your mom's

31:02 How do you use that knowledge to tie the like, try to make a little bit of distance from us a little bit at a time. So that I would be better able to, to face the end when it came and let you know what it never occurred to me while it was happening at the end. It was so gradual, but you could hardly notice. But after after she was gone and I had a chance to reflect on it. I'm absolutely sure. That's that's what she did. And I think the same happened with our family because I I could feel it and I would say even Christmas of 2019, I said to her, I said my we really have to start spending more time together. We want you here. We want to spend more time with you and she would say yeah. Yeah, I know. Okay, we'll do it. We'll do it. We'll do it. And for what?

32:02 Have a reason. She just she she didn't do it in a life of her own. She had friends. She had Church. She has school, you know, she was still driving. She was very much Independence. So, you know, I thought about maybe she has other things going on, but I realize I agree with you. I think she did it intentionally. I think that, you know, she wanted our family, the three of us, Darrell decir, and I should be able to function, and make the decision and move on, and be okay in harassment. So yes, especially I would say especially

32:41 At least within the year to 18 months before she passed for sure. I would agree with you. But I mean, I don't know if we meet for you. It was like it was for me. It was so gradual. I couldn't even see it at the time. It was happening, but she has a relationship in that direction hit that Tiffany, you know, you really need to start spending more time with your mom and he's like, no, I think we need to do more. And so really he was the one who brought it to my attention. And then when I started thinking about it, I'm like, you know, he's right, she is, you know, my mom was at 1 to spend a lot of time with us. What I loved about our relationship is she was

33:41 When we needed her and we didn't have to call her to be there. She would just show up and then she would stay the perfect amount of time. And then she was, you know, go to her own life. So yes, I would agree with a man since we're talking about that something that comes to mind about her being here. Right on time. Is there was a situation where the Seer had gotten the stomach bug of some sort. And so he was about, I don't know, 6 or so and so we nursed him to help. He was, he was sick. He was really sick. And so we nurse come to the house. And then in another two or three days around, guess it is unlike. Okay. I was just going to need the very next day. Sit and so the entire world and I are sitting at this point. And so as I do, I call my mom and she's like, how, how are things going over there? I said, I was sick in bed. We can't go to work. The Seer is doing, I don't know what he expects. We can't get out the bed. I have no idea what's happening. Like the house could be on fire under where. I don't know where he is. So she's like, okay.

34:41 And be hung up from thinking. Okay. We're going to have to tough this out. We're going to have to figure it out. I don't know. We're going to do what I figure it out. And so, not an hour later, here comes my mom through the door bag full of groceries and, you know, she sprang into action. So she, she made some soup for me, of course, the brow get special suit because he's a vegetarian and she entertained us the entire day. I made. They were down here and they sang and played and cooked and ate. And I'm thinking, oh my God, this is amazing, because neither of us to get out of bed at that point. That was like, so,

35:21 Donna, I have to tell you that from my perspective, you have really stepped up.

35:31 To help me through this indirectly. This is been hard. It's been really hard, especially because she was such an integral part of our little family, nucleus and soul. That lost is, is, is devastating. And so, you know, just that you, you know, you had kids of your own, you have grandkids of your own but you, you still find the time to check on us to to come to visit, you know, to make sure the series okay to check on him. How was he in the pandemic? How is his health? You know, he had another seizure this year. He had to seize your, I called you. You've just been amazing and you really helped.

36:12 To make this transition a little easier, a little softer, a little more bearable. So what are your thoughts on again? Sort of stepping up in the family. As you know, the matriarch and you know sort of feeling in that void, did you do it intentionally or how did that happen? I don't know how it happened. But you know, even though she was the speaker but you know, we talked about things in the background before they became the foreground and so, you know where she did.

37:00 Meant to be. It just is what that is. That's got to be. You know what that is hellish for you before, is it because you are up in age. You never even this is a challenge for you cuz you've never been a talker. That's it's not your style. You're more behind-the-scenes more, you know that this is not your style. So

37:30 In this, in through this, you are sort of transitioning into

37:38 Not someone different. I think you're revealing a different part of yourself. I think so too. But you do for me, it comes natural now because it's family, you know what I mean? And dad is totally different than being in the public cuz, you know, I'm not a public person but for me, and for all of me and my siblings is all always, always always been about family. So this is an easy transition for me, because this is what makes me. Joyful. Just like, it makes me feel. Well. I just, I want to thank you so much because I know that, you know, this is this is this is not what you do. Public speaking and sharing especially, you know, potentially to people you don't know. It's not what you do. So as I mentioned previously I this would have been amazing to have this conversation with my mom. I'm to just share some

38:38 Those things that she hadn't shared before from her perspective, but I could not think of another person to have this experience with. I'm so I just want to thank you for taking the time to do this, to share to tell me some things about her that I didn't know before. So again, thank you so much and with that.

39:01 That'll be it.