Ep - 22 A Mother's Radical Faith, Unexpected Miracles and Child Loss

Serena shares her deeply moving journey of faith through pregnancy, motherhood, and loss after her son was diagnosed with Trisomy 13 (Patau Syndrome), a rare genetic condition.

• Faith and motherhood are intricately woven together in Serena's life, not separate elements to be juggled
• Finding out about her pregnancy with "Jam Jam" was initially a shock, coming just nine months after her previous child
• At the 12-week scan, doctors identified potential issues leading to the diagnosis of full Trisomy 13
• Despite being told 90% of children with this condition die shortly after birth, Serena focused on the 10% chance of survival
• Facing her own health complications from a previous pregnancy that left her in heart failure, Serena still chose to continue the pregnancy
• The remarkable moment when Jam Jam, born with no eyes (bilateral anophthalmia), miraculously opened his eyes at eight months old after Serena's prayer
• Jam Jam lived for five years, defying all medical predictions and touching countless lives with his joy
• The peaceful passing of Jam Jam surrounded by family and music, with Serena experiencing a spiritual awareness of God's presence
• Practical ways Serena honors her son's memory, including planting perennial bulbs at his grave, which she calls his "front door"
• Advice for others on this journey: cherish every moment, catalog memories, connect with supportive communities, and maintain faith in God

For anyone walking through pregnancy complications, a difficult diagnosis, or child loss, remember you're not alone. Connect with others and be honest about your struggles – it's okay not to be okay.

Transcript

Introduction to Serena's Story

SPEAKER_00 0:00

Hey guys, welcome back to the Unfiltered Christian podcast. I'm Cece and I'm Shay. And today we have a deeply moving, important conversation. I'm joined by Serena, a wife, a mother of six, and two additional blessings, a woman of Elohim. She has walked the journey of faith, love, and loss. Her son was diagnosed with Correct me, Serena. I'm gonna get this right. Trisomie 13. Also known as Patau syndrome, which is a rare genetic condition. This month marks the anniversary of his passing, and Serena has graciously agreed to share her testimony, how she's navigated through pregnancy, grief, and ultimately her faith in Elohim throughout it all. Before we begin, I want to issue a gentle trigger warning in this episode. We'll be discussing child loss, grief, and navigating life after loss. If this is a sensitive topic for you, please take care while listening and reach out for support if needed. Our aim today is to offer hope, encouragement, faith-based wisdom for any parent who may be on a similar journey.

SPEAKER_02 1:14

Thank you so much for that, Cece. Sister Serena, welcome to the show. Thank you for being with us.

SPEAKER_03 1:21

Oh thank you so much for having me.

SPEAKER_02 1:24

So, my first question for you today is what is it that you love about being a mom?

SPEAKER_03 1:30

Yeah, big question. Um there is so much to love about being a mother. Um, one of the things that I love and also find challenging at the same time is the fact that I am able to see a reflection of who I am through my children. Um, children are absolutely incredible, they are miracles. Um I don't know. I think my children are also different, and even that in itself is just amazing. I have enjoyed watching them grow, I enjoy their the challenges that they bring because me and help me to be a better person. Um, they're fun to be around, they keep me young, they keep definitely that. Yeah, I mean, what isn't there to love about children? Um, in fact, one of my favorite sounds in all the world is the sound of children laughing. Oh my favorite sound, and so yeah, children are a blessing, they're incredible.

SPEAKER_02 2:44

Oh, I love that. Thank you for sharing that. That is so true, honestly. Um, I've heard a friend say to me that um she's looking forward to hearing the sound of a child being around or like toys in the house. And I'm thinking, are you are you sure about that? Are you sure you're looking forward to that moment of toys everywhere? Because trust me, it's gonna drive you crazy. Um, but it that that is it is such a blessing though to to um have children around that. I don't think I can imagine now what it would be like to not hear my son in the house, you know, even when he's not here, it's really, really strange. Yeah, so I completely agree with you on that. Yeah. So how do you juggle your faith and being a mom?

SPEAKER_03 3:27

Uh, how do I juggle it? Um, I wouldn't necessarily say it's something that I juggle, I think it's very much integral. Um, my faith is very much woven into the fabric of who I am as a mother and as a woman. So I would say that faith is it's there, it's present, it's it's evident, and it's very much a part of my everyday life.

SPEAKER_02 4:00

I love that. I really, really love that. So it's just it's really just intertwined in your daily life along with motherhood, and you know, it's just it's just a part of everything, as long as being a mother, being a wife, everything is just yeah. I really, really love that because I feel like that is that it's also the same for myself. So I can definitely relate to that.

Receiving the Trisomy 13 Diagnosis

SPEAKER_00 4:22

We're now gonna talk about jam jam. So, Serena, can you take us back to when you first found out you were pregnant and what was that moment like for you?

SPEAKER_03 4:32

Huh, um, the moment I found out I was pregnant was not a happy one. Yes, children, but um Jam Jam was for us as a blended family child number eight. Okay, and um we weren't expecting another blessing. Yeah, and at that particular time in our life, um, we had just had a child, and he was nine months at the time when we found out that we were pregnant with him, and he too was a surprise and a blessing. Um, so yeah, two blessings in in a matter of months, but um yeah, it was it was a shock. It was a shock, and I think what what made it more so of a shock um was the fact that my husband had been um diagnosed with cancer, he had non-Hodgkins lymphoma some years before, and so we had been told that he was sterile, and he's very much fine with me sharing this. Yeah, but we had thought that he was sterile and that we couldn't have any more children, and so when we got pregnant with my son, yeah, um, the one before Jam Jam, that in itself was just like, Whoa, what's happening here? Yeah, and um, and then when it happened again with Jam Jam, I mean, fair enough, we perhaps should have known and learnt the lesson that it could happen again, but it was still another shock, yeah. So yeah, it it wasn't planned, it was a surprise for us. Um, it took a little bit of getting used to, to be honest, but um once, like once we I don't know, it took maybe a couple of weeks to just get used to the idea, and then it became so exciting and wonderful that we would have the two younger children being able to grow together, thinking about what it would look like days out together, because like we'd not had children so close together before, or at least I hadn't, my husband had beforehand, and so I I quickly warmed to the idea and became very excited about it.

SPEAKER_00 6:49

That must have been a double blessing, like wow, like not once, but twice.

SPEAKER_03 6:54

Yeah.

SPEAKER_00 6:55

It just shows you people that the Lord always has the final say no matter what He dies. Did you receive the news when you were pregnant that um of his diagnosis?

SPEAKER_03 7:06

Yes, yes, so during my 12-week scan, I think it was, um I had done so we had the scan, and I remember seeing his profile and thinking, oh, it looks a bit different. Um I I kind of liken it to one of the Simpsons, um that his profile looked very unusual to me. And it was something that I had raised with the consultant at the time, and um he then suggested that we we do the typical bloods that you have. Um our chances of so you know typically in pregnancy you'll you'll be screened for trisomy 13 anyway. Some people are not even aware of and um so our chances of having a child with trisomy 13, or one of the trisomies, which is trisomy 21, which is Down syndrome, trisomy 18, which is Edward syndrome, or trisomy 13, which is pathos syndrome.

SPEAKER_00 8:14

So it all comes under the different categories, right?

SPEAKER_03 8:17

Yeah, yeah. So our chances looked quite high. And um was it the 12-week scan? Forgive me, my memory is just so I I I definitely have some brain fog. Um, so anyway, we had these bloods done, and the results came back that our chances were quite high. So we were then offered another scan, that was it, and so we had this other scan, and during that time I noticed that his profile looked very different and unique. So we were then offered an amniocentesis, which is where they put the needle through your abdomen and they draw out a sample of the amniotic fluid, and that then taken for testing. And so we we waited, it was I I remember the day that we got the results, it was August 16th, 2017. It was 9:35 a.m. when the telephone rang, and I remember like my husband and I were anticipating these results. It was also my son's 12th birthday at that time, so we had um a house filled with 12-year-olds and cousins and friends. So the phone rang, we recognized the hospital number, we went into the kitchen, and at that point, to be fair, I hadn't actually considered that the results could be positive in my head. Yeah, it was well, like I'm from a big family, I've got lots of brothers and sisters, there's nobody with any significant disabilities there. Um, nobody in my my parents' families that I'm aware of. My grandfather was one of 24, not one person had a disability, and so I wasn't overly concerned, yeah. However, when that phone rang, 9:35 a.m. We are in the kitchen, and the voice of the geneticist on the other end of the line, she she greets us and she pauses, and then your stomach is just in knots at that point. Um, and then she just came up with look, I'm really sorry, the results have come back positive for trisomy 13, and the baby you are carrying has full trisomy 13, and what that means is that every cell in his body was affected. So, in essence, trisomy 13 is having an extra copy of chromosome 13 present in every cell of the body. So typically you'll have 23 chromosomes from a male, 23 from a female, 46 in total. Each one is numbered from 1 to 23. His chromosome 13, instead of having the two copies, one from a male, one from a female, somewhere, somehow, there was that extra copy. And what that means for children with this condition, it it varies. It varies for for Jam Jam. He was born with start with the basics, six fingers and six toes on each hand and foot. He was born with a condition called bilateral anophtalmia, which means no eyes. He was born with heart defect, um, biventricular hypertrophy, so he had thickened heart muscles, um, he had medication-resistant epilepsy, he had lots of respiratory issues, and later in his life was diagnosed with chronic lung disease, he was non-verbal, he wasn't able to eat or drink orally, but he was the most amazing human I have ever had the privilege and honor to meet. He loved music, he didn't complain, he was just a joy to be around. You give him some foil, a foil blanket, and this boy would have the most fun playing with his foil blanket, he had the most magnetic and beautiful laugh, he was just a delight, and he defied all the odds against him. So at the point where it was confirmed that he was positive for trisomy 13, we were then invited into the hospital to sit and talk through our options with the geneticist, yeah, and we were told This was when you were pregnant, this is when I was pregnant. So at this point now, I was approximately 16 weeks pregnant. So we were then told that our choices were to terminate, which you can do at any point in the pregnancy. So even up to nine months, if you decide that you no longer want to go through with this because it's a rare chromosome disorder, and the prognosis isn't very good. So they say that um 10% of children will die within the first few hours of life. So those are the statistics that we were working with.

SPEAKER_04 13:59

Yeah.

SPEAKER_03 13:59

For me as a woman and mother of faith, when I heard 10%, in fact, they told me the opposite. They said 90% of children die hours after birth, right, or within the first two months. And so my thinking was ah, so there is a 10% chance that my child won't, and that's what I clung on to.

SPEAKER_00 14:25

Wow. My next question is literally about your faith. Like, how did your faith in Elohim play a role in how you responded to the diagnosis, which you just briefly touched on?

Faith Guiding Difficult Decisions

SPEAKER_03 14:37

In every possible way, I could not have gone through the journey and continue in this journey without God. Like it would have been impossible. It was faith in action every step of the way, especially when you are told so much negativity. And when we googled what Isame 13 was, it was it was scary. It was scary. Um, but God showed up in so many ways. So initially I was not sure if going ahead with the pregnancy was the right decision. And the reason being at that point I was also in heart failure. So the pregnancy that I had before, I ended up very unwell during that pregnancy. I had what was called an amniotic embolism during labor. So the amniotic fluid had gone up into my lungs, and um I ended up in intensive care, immersed surgery. I also had um a significant hemorrhage. I was in theatre for over nine hours, and then following that, I ended up in heart failure, so there was a lot going on, yeah, and so this was now deemed as a very, very high-risk pregnancy. And the logic of the consultants was look, you are in heart failure, you almost died during your previous pregnancy, just nine months before. Your body has been through a lot, is going through a lot, and now you're carrying a child with a condition that is life-limiting and will not survive. Yeah, and so it was a lot to weigh up, a lot. But my husband, he was very supportive, but he also had a very clear stance, and that was look, whatever you decide, because it's your body and this is your life, I am there for you 100%. He did say, However, I'm not sure how having a termination will impact our marriage, and so that was a really big thing. Now, he wasn't saying it's going to destroy our marriage, whatever. I don't know how this will impact us, and so that really hit me as well, and something to seriously consider. So he he was great and he did lots of research and he connected us to a Facebook group, yeah, and in this Facebook group we were able to see that actually there were children in the group who were five, six, seven, twenty, sixteen, all various ages, which went right against the odds that we had been given and the statistics that had been documented and and shown to us. Yeah, and so I connected with a family there, and she sent me the most beautiful message. So at the time her child was four, I think she was, and I'd seen like this video with them at a wedding, and I was like, What? Okay, they they live a full life, like they're able to go out and do fun things, like it was so far removed from the picture and image that I I had in my in my mind, and so she'd sent me this email, and it was an email of encouragement, and it was words to the effect of God has chosen you to be the mother of this child, and every life is valuable and precious. And I I always interpret her words as literally hugs off a page. As I read the words, it felt as though her arms were literally wrapped around me, holding me and encouraging me, and it was at that point I was like, Okay, God, you've spoken, you've used a complete stranger to tell me exactly what we need to do, and that is to trust you.

SPEAKER_00 19:07

And her words are powerful.

SPEAKER_03 19:09

Exactly.

SPEAKER_00 19:10

Because you don't really think about that, like you just think about the negativity. Well, not all of us, but that's the first thing that you're getting so much information, your life is on at risk, yeah. And all these things, but he still sent somebody in a form to be like, Okay, let your husband channel through to Facebook to find somebody to just give you that hug.

SPEAKER_03 19:33

That is so lovely, yeah, and and it really was powerful. And I remember three days after the diagnosis, I went away with my sister, we went to Barcelona, and I literally had time to process, yeah, and I just remember thinking, look, God, if this child, and we knew it was a boy at that point, if our son is going to have a limited life, then I'm gonna do everything within my power, according to your will, to give him the best quality life, and it is starting now. Amen. And so we were in the sea, and I'd be splashing the water over my stomach, and I'd be telling him this is the sea, and this is the water, and came and laying in the sand, and everywhere I walked and went, I'm explaining and describing to this unborn child, and I determined to give him the most beautiful and colourful life that we could ever give, and allow for him to write his own story, despite what the odds were. So that was yeah, that's how it all started.

SPEAKER_02 20:55

I'm just blown away over here. I'm just like, wow, I have so much to take away from what you said. Beautiful, Serena. Thank you for being so candid and honest. Um, that was so, so, so powerful. Um, and I myself is learning details of your story that I did not know before, especially with knowing the fact that you already had your own health issues before um finding out you were pregnant. There was a lot of things happening there that you could have said, you know what, this is too much. I can't, like Lord, I just can't, I can't take on anymore. And um, that is a huge testament alone um of your faith and talking about really relying on the strength of God. I'm talking relying on. I feel like we really don't rely on him enough, genuinely. It's like kind of like half hearted, and you just showed us right there that that was genuine 150% faith that you had. Um, and what I love as well. I feel like we do take for granted. Um, and I would definitely take away from this today is you speaking about um giving him the best quality of life within your stomach. Um we don't we don't we don't do that in at all in general when we find out that we're pregnant and having a baby, we don't actually do that enough, and that is definitely a takeaway for me. Um, and because I feel like we should be doing that in general, you know, really feeding into our children from that point, and that's very, very powerful. I love that. Thank you so much for that.

SPEAKER_03 22:35

Um, and I just go on actually, which is really important to me, is prayer. And you're right, we don't always do these things in pregnancy, and I hadn't done the same things in my other pregnancies, not to the extent that I did with with jam jam, but every single day, multiple times a day, I would pray over him from the crown of his head to the sole of his feet, and I would name every organ that I could think of. So I'd be brain praying over his spleen, his heart, his liver, his kidneys, his eyes, his nose, his mouth, his tongue, just everything praying over his blood as it's flowing through his body, like every single component, every part that I could physically name, I named and I would pray out loud and I would hold my stomach and plead the blood of Jesus over this child.

SPEAKER_01 23:40

Amen.

SPEAKER_02 23:41

Amen. I didn't know I needed my notebook for this interview. My pen and paper, I need to write these things down, honey, because this is this is gold, this is amazing. Oh my gosh. Oh Lord, I pray that whoever needs to hear this right now will start doing this. This is something I will be telling every single friend of mine now. And if anyone comes to tell me they're pregnant, please start praying over every part of it because it's it's so powerful, you know. We're surrounded by so much sin, especially unseen, you know, the spiritual world where we literally cannot see what's going on, the battles that what what um you know God is protecting us from. And so that innocent little being inside of you, they they're in need of us to be that mouthpiece for them. And so that is so so powerful. Um oh gosh, oh, got me emotional over here. I love that, I really, really love that. I did pray over my son when I was pregnant, but oh, every organ, yes, I I will be doing that for baby number, whichever, for sure. Okay, um, so in saying that, you already touched on prayer, but um, were there any scriptures um that you leaned on that strengthen you during pregnancy even during that time frame?

Jam Jam's Life and Miracles

SPEAKER_03 24:59

There was so many, actually. Um, in all honesty, I can't even think of any one particular scripture other than Proverbs 3, verses 5 to 6. Trust in the Lord with all thine heart and lean not unto thine own understanding. In all your ways, acknowledge him, and he will direct your paths. Um, for me, I had no idea of what was to come. Every aspect of this journey was unknown, and so I had to trust in the Lord with all my heart, I had to rely on him to direct my paths because I had no idea. You know, sometimes when we do have that foresight, when we know the journey, like we lean less on God because like we've got this, haven't we? But in a situation where everything, everything is at stake, everything is unknown. Like for me, there was no other way, there was no other choice, there was no other person, no no one to lean on, no consultant, no doctor, no midwife, not even my husband. Like it had to be, could only be our Heavenly Father. That was it.

SPEAKER_02 26:15

Very true, Amen. Thank you for that. Um, so how did you prepare yourself mentally and emotionally and spiritually as well for the journey ahead?

SPEAKER_03 26:29

Um, I don't know if I if I was prepared. I don't know if I was prepared for the journey ahead. What I did do, because again, it it sounds so cliche, but it just goes back prayer and just stepping out in faith. It's like Lord, I don't know what's gonna happen. I don't know if my child is gonna be alive tomorrow, but I trust you. And it was it was a mindset of no matter what happens, I'm going to trust you. I'm going to trust that this is the plan. And I knew that ultimately there is a long-term plan. Like, God knows the plans He has for us, and it's plans for us to prosper, plans for our hope and an expected end. I always knew that if my son was to die in utero, there will be a time where we we will be reunited, and we will be rejoicing, and God will give us our son back again. I knew that if he died after birth, that it's the same thing. There's that promise, you know. That's the only thing that I was certain of is that promise to come. Everything else in between, we had no idea about. I just I can't really say that we did anything to prepare. I I stopped looking at Google, I connected with the community, I would see other children and reach out to other families. But most importantly, because this was our journey, and their journey is their journey. We had to just rely on God. I had to rely on God, and and that was it. There was nothing else. There was nothing else.

SPEAKER_02 28:39

Amen. I love that. Um, so let's talk about the life of your son. Um what were some of the most precious moments that you had with him?

SPEAKER_03 28:56

I think that's really difficult as well because every single moment, every moment was precious. Um I remember when he was born, he was born via cesarean section, and I just remember him being held over me. I got to give him a cuddle, I was able to smell him, to feel his hairbrush against my cheek, and I literally tried to catalogue everything in my mind to hold on to the smell, to hold on to the touch, the feeling of his hair, and then he was just quickly whisked away. But that moment of knowing we've made it through the first hurdle, you've made it through the birth, and you are here, and it was a fight for him from the very outset because he wasn't breathing, he ended up in intensive care, and every moment was a fight and a struggle, and we went through so much, but um precious moments every day, every day was absolutely precious, and and I'm not just saying that, every single day that we had, I made it count because we just didn't know what tomorrow would hold. Every day, I mean, we spent a lot of time in hospital, but literally the day we'd be discharged, and our nurses would just laugh at us all the time. The day he was discharged, and it may sound crazy, but we would do something, even if it was as simple as go for a walk in the park, but we would do something. Every moment was precious, every moment.

SPEAKER_02 31:08

Amen.

SPEAKER_00 31:09

Thank you for being vulnerable. As this month marks the anniversary of your son's passing, how have you been processing this season?

The Day Jam Jam Received Eyes

SPEAKER_03 31:21

I haven't. I will be very honest and transparent. This is the first moment that I have sat and actually spoken about him for a very long time. I have pushed everything aside and I just keep busy, and I know it isn't the healthiest way to deal with things, but it is where I'm at right now because it's hard. It's hard. He was he was the person that I spent the most time with in all this world, even within the five years, we were together pretty much all of the time, and he relied on me for everything because he could do nothing for himself, absolutely nothing. He couldn't change himself, he couldn't feed himself, he couldn't even reach to grab a toy that he wanted. Yeah, he wasn't able to see that in itself is a whole other miracle because God gave my son eyes. He was born with no eyes, yeah, but on the 20th of August 2018, yeah, God gave my son eyes.

SPEAKER_04 32:56

Wow.

SPEAKER_03 32:57

My son and I were walking to the GP surgery, and prior to this day, he had been tested at two major hospitals. Yeah, both of their findings were exactly the same. So the first one told us bilateral anathalmia. We wanted a second opinion, it did just didn't, I didn't understand it. I needed a second opinion, like they had to have been wrong, but no, their findings were exactly the same as the first hospital, and so this was something I really struggled with, really struggled with, and I remember on this morning, August 20th, 2018, we're walking to the GP and I broke down, like literally broke down in the street, pushing his pushchair, crying out to God, saying, Lord, please, if you are real, if you are there, if you are the creator of this world, which I know you are, speak the words, let Jemiah Lee have eyes. Speak the words, Lord. You created the heavens and the earth, you said, let there be, let there be light. You spoke the sun, the stars, all these things are huge and magnificent. This is nothing for you. Just speak the words and give him give him eyes. And I prayed and I called out and I prayed, and I remember tears just flowing down my face, snot, everything just dripping. And I got to the surgery doors, and we'd always been told never prise his eyelids open because we could introduce infection that could then um affect his brain. Okay, so I never did, I never did. I followed everything they said. Yeah, so we sat down in the surgery, and I kid you not, within less than 15 minutes, my son opened one eye for the very first time in his life. Now, every photo we have from zero to eight months, yeah, to that day, every single photo, his eyes are sealed shut. Everyone in the hospital, all his consultants, the nurses, everyone knew this was the child with no eyes. Yeah, and yet on that day, God heard this prayer, and miracles still happen today. They happen today, and I've seen it and experienced it. This boy had eyes later. And I remember at the moment at that time, I thought I was going crazy. Like, I'm so desperate for this. Is this my imagination? Is this like what's going on? There was a lady next to me, a Jamaican lady. I'm like, excuse me, excuse me. Like, can you see? Like, have you got eyes? Can you see an eye? Can you see? Yeah, yeah. And and and I mean in my girl, two eyes, little dish. No, she was speaking prophecy. Hey, love boy opened the second eye. Now, when I went back to the ophthalmologist and I questioned them, like, what has gone on? Did you get this wrong? You told me my son had no eyes. You did your tests and everything else, and you told me he had no eyes. Were you nobody can give me an answer? They told me they were not wrong. That's what their findings concluded. They cannot understand what has happened here. Yeah, and we were told that eyes cannot grow after birth, they don't grow after birth, but yet this child had eyes. Now his eyes were very small, very tiny, and he had a very disorganized um eye.

SPEAKER_04 36:48

Yeah.

SPEAKER_03 36:49

But praise be to God, he was able to respond to light, he was able to respond to the color red and the colour white.

SPEAKER_00 36:59

Do you know, Sina? I'm still you got me shocked on just that whole bit. Like you had faith. Like when the Bible says you if you have faith like a mustard seed, your faith was more than that. Like, wow! And he just in 15 minutes did it, he did it.

SPEAKER_03 37:15

He did it. I mean, there there were so many miracles that happened even prior to that, because he we were told he was deaf and God gave this child hearing. Amen. We were told that he would not live past utero, he lived up to five years. We were told so many things about this boy, and yet God just showed us time after time after time that he's got this child in the palm of his hand.

SPEAKER_00 37:46

He was our little miracle boy, he really was during the um the hardest times whilst Jamjam was alive, and as we as we heard, you've even answered my question, but I just have to ask this question when Jamjam was alive, because obviously, behind the scenes, when you are at home alone, there's so many thoughts going through your head. How did you find comfort in Elohim?

SPEAKER_03 38:14

It's so interesting because being home alone together, number one, I always knew God was with us, always knew God was with us. How did I find comfort in him through his word, through the people that he brought into our lives? Like God handpicked every single person in Jam Jam's team, and I believe that with every fibre of my body, yeah, God handpicked and selected people, and those who were not supposed to be there, who were appointed, but not by God, he removed them. He showed up in so many ways, so many ways. Like Jam Jam. When I say this boy was loved, he was loved. He had many birthdays in hospital for his fifth birthday. They gave us the entire back end of a whole ward. They hired entertainers, they allowed us to bring our family. I'm talking there was about 50 of us. Now, in hospitals, you know it's two people allowed.

SPEAKER_00 39:29

Yeah, yeah, yeah.

SPEAKER_03 39:31

People to bring in food, drink, cakes, everything. He had the greatest consultant, he had just the best team who really advocated for him, they cared for him, and it wasn't just a job. And I can confidently say that, and even though we had battles because we did, there were differences in opinion, there was differences in where I would say, but God has told me this, and it was well, we see something else. We if we know you have your faith, Serena, but this is what the evidence says, and I would say, but God has told me this, yeah, and I know that my God is not gonna fail me. Yeah, and so it's never leave me or forsake me, yes, exactly. So there was so much, like God, He was just present in every single moment, even in Jam Jam's death, every single moment. I used to say to the staff that um, like I was always told throughout his life, Jam Jam's dying, jam jam's dying, jam jam's dying, and it would really get on my nerves. I'm not gonna lie. And so I always said to them, Look, whenever that time is to come, I know my God will prepare me for that, and that has not happened now. God will prepare me, and he did that very day. So Jam Jam had been in hospital for 10 months, and it was a long, difficult journey. He went through so much, so much, but we were able to bring him home after 10 months on what was called a palliative pathway. So he was no longer, and this was an agreement by the hospital and us that we did not want him to go back into intensive care, and so the plan was if he was to get better and do well over a three-month period, then that would be reviewed and full intervention could possibly be restored. Jam Jam came home on the 2nd of March 2023, and we'd actually taken him on holiday to um Centre Parks. This was a great charity that that arranged this, Make It Wish UK. Have to give them a shout out. Amazing charity, please do support. Um, and we had gone on Wednesday. Oh golly, what was the exact date? Anyway, we'd gone on a Wednesday, we returned on the Friday, and then jam jam the following Wednesday. At this point, sorry, he was on a ventilator, he was ventilator dependent, so he wasn't able to breathe on his own. Um I remember at 5:30 that morning he had stopped breathing, so he had night nurses, and in our home we had alarms where the nurse could just press the alarm, it would make a sound throughout the house, and everybody would just come running. So at 5:30, the alarm went off, came running. We resuscitated him. It was really difficult to bring him back, but we did. Same thing again happened at 11:30 that day, and then at 1:30. And I remember during the day because it was like our most trusted nurse who was on the day shift. I remember thinking, right, it's her. Let me go and do a few things in the house. So I remember cleaning up in the kitchen, I was mopping, and the Holy Spirit said to me, Stop. Go and spend time with Jam Jam. And I was like, huh? Okay, Lord, everything down and I went into Jam Jam's room with the nurse, and I just remember laying with him. We were singing, playing all his favourite songs, reading books, and then at 1:30, the same thing happened again. And this time it was really difficult to resuscitate him. And I remember saying to the nurse, stop. So the process that was used, and and I don't know if it's okay to go for it. We we have like what was called a bag.

SPEAKER_04 44:31

Yeah.

Saying Goodbye to Jam Jam

SPEAKER_03 44:32

A bag valve mask. So you put the mask over and you squeeze the pump and it administers breaths for him. And this wasn't working. So I kind of pushed that aside and was just giving him rescue breaths mouth to mouth. And even that wasn't working. So I said to the nurse, let's just stop, stop. I don't want any more of this. Let's put him back on his ventilator, let's see what he does. So we called our palliative care team, we let them know what was happening, and at that point they said, Serena, we think jam jam's trying to tell us something. We think this is it. Like, call your husband. So I called my husband, he came home, and even when they said that, like I kind of rolled my eyes, it didn't hit me. It was like, yeah, whatever, like God has not told me, God has not prepared me. So my husband has now arrived home, and Jam Jam is in my arms, his head is on my left, my left, it cradled in between my left arm, and I'm holding him. And um, I just remember there was this mist that came all around, and I remember saying to Darren, my husband, like, is the diffuser on? Because we always had diffusers on, our lavender and lovely essential oils, frankincense, etc. And he was saying, No, the diffuser isn't on. So I turned my head and I looked at the diffuser, and I could see, oh, it isn't on. So, where's the mist coming from? And he was like, What mist? And I said, Babe, the mist is right there, like it's here, can't you see it? And he was like, What are you talking about? What missed? And I was getting frustrated, like, there, it's in front of us, the mist, and as clear as like if you hold your hand up and you look at your hand, as clear as that is to you, that's how big the mist was to me. And at that point, it hit me, and I said, God, is this you preparing me? Is this is this you? And I just felt and heard the conviction, yes, it's time. And so I prayed and I said, God, please help me, help me, tell me what to do, tell me everything I need to do so that Jam Jam isn't afraid, so that he's calm, he isn't scared. Tell me everything I need to do. And so the Lord said to me, just lay down with him, get his beanbag, and he had this huge red bean bag. And so we moved his bed to one side and we transferred the ventilator and everything over to where the beanbag was, and I laid down with Jam Jam. And I just kept praying, Lord, what do I do next? What do I do next? So he played all the songs that Jam Jam loved, Gyra, Goodness of God, all these songs that he just absolutely loved, and picked up his book. So I had written a children's book called Jam Jam Can. And we read him his story, and little by little the room was being filled with his siblings and family, friends, and um the palliative care team had arrived, and um we were advised to take him off the ventilator. We could see that his breaths were becoming less and less, but his heart rate was stable, it was steady. And so this was a bit conflicting and confusing. Like, what's happening here? But we just kept praying, we kept singing and then that was it.

SPEAKER_01 48:29

That was it.

SPEAKER_03 48:31

We said goodbye to him at 5 50 on Wednesday the 29th of March, and he was surrounded by he was surrounded by so much love the presence of God. I know angels were there with us, I know that. And um it sounds so bizarre, but the nurses that were present they have said that it was the most beautiful death they've ever experienced. And for me, it's such an oxymoron. How can death how can death be beautiful? But these are their words, but everything was calm, he wasn't panicked, and we know that because his heart rate was so steady, and his heart rate was always the indicator for us when something was wrong. But I just believe that um that he was ushered into the presence of God that his spirit went back to God, and I I have that hope and that firm assurance that when that trumpet sounds and the dead in Christ rise first, jam jam is going to be there, and I have this vision of an angel just holding him and bringing him, presenting him to me, and we are just gonna be reunited and laughing and hugging, and he's gonna talk and his voice for the first time, and he's gonna see, and he'll be so excited. And Mom, look at this, look at that, Mom. That's what you look like. Like, I just have this beautiful picture in my mind of how this this boy is going to be, and this is why every day now, like life has a very different outlook for me now. I'm checking myself every day because there is nothing, nothing is going to stop me from being reunited with my son. Nothing. Nothing. And I love God and I love Jesus, and I want to see, I want to meet Jesus, but I've got to be honest, I want to see my son more. But it's the truth.

SPEAKER_00 51:20

I just want to see my son.

SPEAKER_01 51:24

Sorry.

SPEAKER_00 51:29

So he might even come running to you and saying, Mom, look, everything, you know, that day is gonna be so amazing, and your your testimony is so powerful, yeah. Powerful, like me who has little faith, like your faith has triumphant when nobody's when people say that you cannot, God can, and yeah, he's in that number, and you be with him, you be with him, and it's do you know what is so beautiful is that Jam Jam is still very much present in everything for me.

SPEAKER_03 52:12

I know he's physically not here, yeah, but the work that I do with other families, he his story has impacted me so much that I just want to give, and I I am able to really empathize and understand and to to listen and to hear people in their own journey, and that's the gift that he's given to me. The fact that once upon a time I may have been someone to maybe hold grudges or get angry, upset, or nothing in this world matters anymore. Nothing, nothing, because all I want to do is honor God, be in his kingdom, and be reunited with the gift that he gave to not just to me, because I call him our jam jam because he was so many people, he really was. He had nurses who were mothers to him, his siblings who were mothers and fathers, and so many people, so many jam jam community. He did the day he left hospital. There was a row of people on either side, doctors, nurses, so many different people. And as we walked through standing ovation for this boy, the paramedic that brought us home, he was like, What's going on here? He said, I've never seen anything like this. It's like, is he famous? No, he's just jam jam. But that's the impact that he had on so many people. I'm talking the cleaners, the porters, everyone knew this boy.

SPEAKER_01 54:08

Everyone, everyone knew him.

SPEAKER_02 54:10

What would you say to a mother who is struggling with guilt, anger, or questioning Elohim after the loss of a child?

SPEAKER_03 54:24

You know, that's a very natural and human response, and I have friends in that position, and the best thing that I can do is just support them through their journey. I think grief is very much personal, and how we deal with it, how we process it, how we project towards our father is very much personal and individual. I think I guess one of the challenges that we have is we understand that God is a perfect God and He is all omnipotent, like He gave Jam Jam eyes, He could have also saved Jam Jam. You know, I also recognize that there is an enemy and there is sin in this world, and the one thing that I try to reassure my friends with, and and you have to be so careful because not everyone is ready to receive this uh uh in their their in the midst of their pain, like you're you've got a wall up, you don't want to hear it. But I truly believe that because God is so loving, he has given man free will, he has given man choice, he is a loving and caring God, and he has an ultimate plan of salvation for us. So this is not the end, it isn't the end. There is a great, a great hope that we have. Like, God is so amazing that He knew all of this was going to happen, and and even in my own personal journey, you know, there are times where people may think, Why me? Like, I've recognized I am not any special, any any different to anyone else. We've all got our different journeys, our different trials, our different struggles, but it's how we choose to navigate that that is key and important. And for me, I always found joy in our journey. It was tough, like having to resuscitate your child 13 times a day, which is what happened on one day, it is depleting and it's draining and it's tough and it's difficult. But I gave God thanks every time we got through that, every time we got through it, it was like thank you, God, for taking us through. And the mindset I have now, I remember there was a day where I stood at my son's grave and I said, Thank you, Jesus, he will never have another seizure again. You've healed him in Jesus' name. Thank you, thank you. Thank you that he'll have another needle, he won't have another injection, he won't need to have um food through his tummy again, he won't need to have any hospital admissions again, no more tubes. Like he is free. He is free, he's been released from that, and I thank God for that. I also thank God for the fact that we had him in our lives because he was I've I've said that he was a gift so many times, and he really was. And so I am grateful for the gift of Jam Jam. I'm grateful for who he was. Sometimes I think what would it have been like if if like if he was neurotypical, what would have been? And then I think of like it's it's such a quandary. Like, if he was neurotypical, then so many other things would just not have happened. Who I am today, speaking to you today, would just not have happened. So we just have to trust God, trust the process, and trust that his plan of salvation is solid, it is real, it is true. God cannot lie, and his word tells us, his word tells us, and as people of faith, it's a lot easier to deal with because you can spend time in your word, you have that hope. When you don't have faith, it's a very different ball game, and people do have uh this really challenging view of God, but God sent his only son to die for us, and I remember once I was battling with God shortly after my son died, and I was saying, Yeah, but God, it was different from you. Your son died for three days. My son's been gone for how long? You got your son back, and you know what God said to me?

SPEAKER_01 59:31

He said, Serena Jam Jam was my son too.

Living with Grief and Hope

SPEAKER_03 59:37

Every one of his children that have passed, every one of our loved ones, they are God's children too, yeah, and this is why he has that plan of salvation because he wants to be reunited with every one of us, and we're not exempt. There are things in life when I hear about situations that other people have gone through, I think to myself, God, thank you for my journey, because I would never have been able to handle theirs. He's a God of grace, and throughout our journey, he's taken us through every step of the way, and so my encouragement to others is to cling on, cling on, claim every word, claim every scripture, know that he cannot lie, he is God, every word is truth, and we have to believe, and there's so much evidence that God exists, like for me, it just doesn't, nothing else makes sense. Nothing else makes sense. I think of like big bang, like when there's a bang, isn't that destruction, isn't that like things being destroyed? Yeah, perfection and harmony, it just doesn't make sense. The fact that our bodies are so intricately detailed that man cannot even fathom or fully understand it. Like just got that is not a coincidence or accident, that is not an explosion, yeah. God, the creator. So it's these things that really challenge me, and they increase and enhance my faith because there's just no other way to meet, nothing else makes sense, that it just doesn't make sense, and so I encourage people to hold on to his word to keep going, and also to just look for those places where you can give thanks and have gratitude, and I think that's something that's really kept me even in his death.

SPEAKER_02 1:01:49

Amen, amen. Um, how can family friends, family, friends, and the church better support mothers or parents who are walking through this journey?

SPEAKER_03 1:02:02

Oh, the things you say, for one. I've had people say to me, Isn't it time you get over it now? It's time to move on, you've got to start making a life for yourself. No, he's yeah, that's harsh. That's horrible. I will never get over it. He is my son, a huge part of my life. I will never get over it. I will learn to live through it, I will build experiences around this pain, but it will always be there. When people say we don't grieve like the world grieves, I hear that, but grief is grief, and grief is pain and it's agony for anyone who lost a loved one. So, yes, the difference is we have that hope in Jesus, which is why we don't grieve as the world grieves, but that doesn't mean we are not to be in tune with our emotions, it doesn't mean we should not feel the pain because this is not what God designed us for, right? Part of the plan, and so grief is very real and it's painful. I've also had people say things like um it's gone out of my head. Um he's in a better place. That one, that one really hurts. And it hurts because I know where my son's body is and it's in a grave. Right, he's under the earth in a grave, he's not in a better place. The best place that he could be is in my arms. That's the better place to me. So I think when we are dealing with people who are grieving, I think it's so important that we listen and be led by them to really hear and ask, how would you like me to support you? We shouldn't make assumptions because how I deal with grief and my outlook is going to be very different to somebody else's. So it's taking that time to ask that individual, how can I best support you? What do you need from me? Rather than us making assumptions, and rather than us throwing those cliche cliches out there, even scripture, we don't grieve like the world grieves. You know, because grief is tough, sure is and when you're grieving the loss of a child, a child that you've carried for nine months, a child that you have loved, and to have that person just disappear, it's it's agony, and I think for us it's in addition to the loss of jam jam, there is the loss of the community around him, there was the loss of all his medical equipment, things that we were just very much used to. So I call them the deletions, and so for us, there were so many deletions, his bed and this and that, and there was so much. So we lose him, then we lose everything else. So I think it is really important to just speak to people and see how them as a person, as an individual, want to be supported.

SPEAKER_00 1:05:37

Um, thank you. For parents who receive a life-altering diagnosis for their child, what advice would you give them?

SPEAKER_03 1:05:47

The best advice that I can give is one you have to do what's right for you. You have to do what's right for you. Everyone's journey is Different. I am not someone who is at all judgmental. Some people make the choice to terminate, and that is right for them. For me personally, my choice was for my son to write his own story and for us to stand in faith and trust God through the process. I think it's it's a life-changing life-altering decision when you have a child with complex needs. But for me, I'd never make a different decision because we gained far more than we lost. Far more. And we have that hope. I have the hope that because he was here, we're gonna see him again. Like if he wasn't here, I wouldn't have that. But ultimately, I think it's very much an individual choice. And I would say you do that prayerfully. Prayerfully, trusting God every step of the way.

SPEAKER_00 1:07:22

What are some of the practical ways to honour the memory of Jam Jam while you're continuing to heal?

Supporting Parents Through Loss

SPEAKER_03 1:07:27

Oh, that's a lovely question. Um, so many ways. I think, for example, at his grave we plant bulbs, and I always plant perennials so they die but they come back, and that signifies what God is going to do. I I call his grave his front door, and for me that is another reminder that this is the place he's going to come forth from. It's a front door, it's closed right now, but it's going to open because that's what doors do. Um we talk about him every day, every day. Like the room I'm sitting in, we call it Jam Jam's room. We have lots of photos. He he's in so many conversations, like he's just not forgotten about, he's not a word that we don't speak of, you know. He's literally a part of our conversations day to day, and it's very natural. And so, yes, we do the the unique things on on like the anniversary of his death. Last year, we went to the hospital, we bought gifts for other children, cupcakes for staff. They have a special book with an inscription in it for him, and so it's nice to do that. We let off lanterns last year, it didn't go very well. It was a bit of a disaster, but we laughed and we laughed and we laughed. It was it was fun. Yeah, that was a fun moment plotting the bulbs and seeing them grow and seeing the flowers, and then I get excited. Oh my goodness, there's another flower, there's another flower, and so it for me though those reminders are just so powerful, yeah. They're so powerful, but yeah, he's he's very much remembered all the time, and he's always in my thoughts, always. Like I could be having conversations with people, and he's there in my mind all the time.

SPEAKER_00 1:09:58

So my last question is if you could say one thing to a mother who is in the middle of this storm right now, what would it be?

Honoring Jam Jam's Memory

SPEAKER_03 1:10:10

Cherish every moment, every moment, catalogue every moment. Like I have over 8,000 photos and video footage of Jam Jam. And every day I scroll through my phone, and I like I type his name in, scroll, scroll, scroll, stop, and see what that memory is, and then it's like oh I remember this day, and so cataloguing moments, just making the most of every moment. Like we were told so many we're not gonna do this, he can't do that, he can't do this, and he can't do that. But for us, that was do you know what? This is a person, he's not his diagnosis, he is a human, and so we gave him rich, valuable experiences. Jam Jam went everywhere, and I was proud to be his mum from museums to farms to zoos, uh retreats, like everything, boat rides, just everywhere. We did so much with him. I used to say to him, Jam jam, you're gonna be on the chore chart. You stay there as soon as you're old enough, you are going on that chore chart. I love that. We did mess play, we we sang, we just you know, we just enjoyed each moment. Yeah, so for anyone that's going through this, and it's a tough journey, and and I really appreciate that everyone has a different mindset, different view, and how I chose to handle it may not be how somebody else will, yeah, but also just remembering that it's okay not to be okay, like seek out and reach community, coming together with other people is so valuable. I drew the most strength from other parents, and it wasn't just parents with children with trisomy 13, other parents who had disabled children of different ages, different conditions, but there was that commonality that our children had a disability, and I'm still friends, very good friends, with a number of those people today. So even though my son isn't here and their children are, we are still very much united. So you don't have to be alone, reach out and connect, connect, and also be honest: if you are not coping and you are struggling, speak up about it because we we're not superhuman, yeah. You know, we are not superhuman, and it is okay not to be okay, it really is. And there were moments where I I had to tap out, and it's not that I was leaving or doing something because I didn't I didn't want to be with my son, whatever. I needed that space to refuel, replenish, and come back even stronger. So there were times where I would go out with my friends, and yes, I was worried I'd be checking the camera and finding out what's going on, but I tried not to have guilt for that. Yeah, I understood the value that if I'm not good, how can I then be good for my son? Yeah, you know, so self-care is so important, it's so important. I made sure that I had massages, I'd have a friend come and I would get my massages. You know, there were times where I took my other son on holiday, like, and for me it was always a faith movement. It was like, God, I know you've got him, I know you've got jam jam. Yeah, I'm leaving him in your care, not just the care of his dad and the nurses and everyone else, but I'm leaving him in your hands, you know. So I think it's really important that anyone in any situation with a child, complex needs, disabilities where it is tough, and I appreciate it, but you have to look after you. You have to. It's just like the whole aeroplane scenario, you know, you put your own oxygen mask on first.

SPEAKER_01 1:14:13

Yeah, yeah, yeah.

SPEAKER_03 1:14:16

You have to, you have to, and don't feel bad or guilty about it.

SPEAKER_00 1:14:21

You have to, yeah, because if you're not 100%, you can't be 100% for the person you're looking after.

SPEAKER_03 1:14:28

Exactly, but always stay connected to God, like He is the biggest fuel. He really is. Yeah.

SPEAKER_00 1:14:39

Ah Serena, thank you so so much for being so vulnerable and sharing your heart with us today. The fact that you haven't spoken about it in so much detail for a long time. So thank you so much for sharing your journey, your faith, your resilience, your love, and you're encouraged to help other mothers, parents, or guardians and caregivers throughout the world.

SPEAKER_03 1:15:04

I pray so, and thank you for the space and the opportunity, and I do pray that that others will be encouraged and will be blessed and will find some strength, and most of all, will just remember who God is in their journey.

SPEAKER_02 1:15:24

I didn't realize you wrote Jam Jam Can during the time that Jam Jam was here with us. Yes. So what actually brought that on? What how did that come about?

SPEAKER_03 1:15:35

It's so bizarre. One day I was sitting with Jam Jam in his room, and the words literally just came to me, and I thought, I better write this down. And it just sounds like so weird. There was no plan, there was not the words came and I wrote them down. Wow. And then I thought, ah, this could be a children's book. There was actually something that did trigger it, and I didn't write it at that particular time, but I remember a child had seen him and was quite appalled by him. So he looked at Jam Jam and he was like, Oh, why does he look like that? Why is his eyes like that? And so I had to explain to that child, look, I introduced him, this is Jam Jam, da da da da da, like he has a disability, he's different, etc. etc. etc. And by the end of that conversation, he was a lot more kinder, a lot more gentler. And so it was in my head that I did want to write a book because I did want to break down those unconscious bias that people held and those negative connotations and thoughts that people had, and and even the the I guess the openness of children. I just needed to break down those barriers to know that it's okay to be different, like children need to know that. And so that was the initial catalyst, but the words literally came just one day sitting with Jam Jam, and it came. I guess that was good.

SPEAKER_00 1:17:14

Is the book still available and where can people purchase? Or do you have any links or anything that you would like to share that could be available to other parents?

SPEAKER_03 1:17:24

Oh, yes. It is still available, it's on Amazon, it's called Jam Jam Can, written by Serena Pascal and illustrated by Zenovia Grant, who is totally awesome. We're working on revising the book, so thinking of doing a second edition edition, but that is not something that is out yet. Um, yeah, that's a work in progress, but the original book, it's a beautiful book, it's empowering, it's encouraging. There's the strong message of I can. So when others think you fail, in the book it says when others thought he'd fail, jam jam said I can.

SPEAKER_02 1:18:05

So yeah, and Serena also has her Instagram, Mom of Faith, as well. I also put that in there, and she does have her website as well, um, momoffaith.com. You can always go in there, also. Yeah, thank you. And I'm gonna say a prayer and we're just gonna end. Thank you. So, dear, blessed, and wonderful father. I just I really just want to give you praises and just lift you up and say hallelujah and thank you so much for this moment, for this time, for this safe space that we were able to share with Serena Lord. Thank you so much for her. Thank you, Lord, for her vulnerability, and thank you, Lord, for blessing us with Jam Jam Lord, so that we're able to sit here right now and speak about him and the testament that he was for so many and that he continues to be for so many, Heavenly Father. We just give you praises for this moment and for this time. And thank you, Father Lord, for being with Serena. Thank you for being with the rest of her family, Lord in heaven, for sharing jam jam with the world, Lord, so that he can inspire so many, so that we will continue to be talking about him and how much he has inspired and taught us, gracious God. Father Lord in heaven, we just want to pray for anyone right now who is listening, who is being maybe triggered by this moment. Father Lord, be with them right now and comfort them, gracious God. And even, Father Lord, be with Serena right now, Lord in heaven, as she continues to go through reflecting on moments with Jam Jam. And um, as his death anniversary is approaching, Lord, we just pray that you'll be with her and be with her family and just comfort them at this time, Heavenly Father Lord, and continue to comfort them, Father Lord. Continue to be that hug and care for them and just place your um Holy Spirit within them, Father Lord, in heaven. And gracious God in heaven, um, I just pray for others, Lord, who are going through this time of grief, this time of hurt, or who are dealing with a child with disability, or even maybe an adult or caring for someone right now. And Lord, I'm just asking you to please strengthen them, Father Lord, in those days and moments of weakness or tiredness or exhaustion or just not knowing what to do. Father God, bless them with the knowledge, bless them with the care, bless them with the support that they need, Father Lord, in heaven, and continue to bless them with their village. Father Lord, in heaven, it's so important, Lord. You did not want us to be on our own. And so, Father God, send those people into their lives that can be there for them and comfort them. And just thank you so much, Lord, for this time. Once again, we appreciate you and we love you, Lord, for all that you're doing, Lord. And thank you so much, Heavenly Father, Lord, that even in this sinful world, you are still doing miracles. Is it anything in us, Lord? Once again, hindering or stopping these prayers from reaching it. Please be removed. Yeah, bless the son's name as we pray. Amen. Amen.

SPEAKER_03 1:20:56

Thank you so much.

SPEAKER_02 1:20:57

Thank you. Very welcome. Thank you.

SPEAKER_03 1:21:01

You are welcome, and God bless you both.