Janet Swink on 20 Years of Caring for a Daughter with Sanfilippo | COMPASS in the Storm Ep 8

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Transcribed from the episode audio. Names, places, scripture references and medical terms have been corrected, and caption noise has been removed. Speaker names are not marked, because the source captions marked only that the speaker changed and not who was talking. Paragraph breaks follow those speaker changes.

The day after she turned seven, something happened in her brain and she started screaming, pulling her hair out. We had to physically hold her down for 72 hours. She never slept.

I was so angry. I just thought, “How? How? Why?”

Yes.

Felt rejected. My guest today endured the long heart-wrenching journey of slowly watching her young daughter succumb to a rare genetic disorder. But amidst this heart-wrenching journey, God did a miracle in the life of young Rachel, her daughter, and she forever touched the lives of all those around her. You’ll want to stay tuned. Hi, I’m Lana Bach, your host on COMPASS in the Storm, where we feature the stories of people overcame lifealtering storms with God’s grace, now bringing hope and encouragement to others. My guest today is a mother of four and began her journey in nursing where her natural gift of compassion and caring unknowingly prepared her for future unforeseen challenges. As soon as I met her, I knew her story needed to be shared on COMPASS in the Storm. Please welcome my guest today, Janet Swink. And Janet, thank you for being with me today.

Hi there. It’s my pleasure to be with you. Thank you so much, Lana.

Awesome. I’ve been looking forward to this day. And Janet, as soon as I met you and I heard your story, I knew you needed to share your story on COMPASS in the Storm. And the journey you and your daughter endured together was very heroic and yet a very painful one. I can’t even imagine how you went through 20 years of watching helplessly as your daughter’s health declined. But Janet, you did and you came through that storm and you still love God, which even more.

Yes. And so Janet, I’ve just been waiting for you to share this. would you please explain just a little about the rare genetic disorder that Rachel was diagnosed with and especially please tell us about beautiful Rachel and her incredible journey.

I would love to. She was the joy of my life. So Rachel was born with a rare progressive degenerative disorder called Sanfilippo syndrome. it is the it is the family of mucopolysaccharidoses and there are many disorders within this umbrella and basically each one of the disorders is missing a certain enzyme. Now without this enzyme

these diseases come

and Rachel was pro she was the fourth child of four and she was born the day after her sister was born two years later which was really fun for us but I noticed early on that she had there were some issues. She had lots of ear infections and to make a long story short, she literally progressed within the guidelines of Sanfilippo syndrome. But because it was so rare, they didn’t know what was going on.

So she started off developmentally delayed because she was the fourth of four and I’m a nurse. I knew something was wrong.

Yeah.

And the doctors were just kind of, you know, oh well, it’s not this, it’s not that. Get over it. you know, I’m sure it’s going to be fine. And we tested her. She had an extremely once she went to speech therapy, she learned sign language first.

Okay.

She had speech therapy, she had an amazing vocabulary.

Wow. Right about the time she was about three, she was progressing but so slowly. Four come along and she needed a lot of help. And then we started noticing areas where she progressed. She started to regress.

Well, by the time she was six, I knew this mama knew something is really wrong with her neurologically. I knew it. So, she was could she could ride her bike, but then she couldn’t ride her bike. She could skate, but she couldn’t skate. She’d fall. She was always falling. she was always hurting herself. She was aggressive, very aggressive. And, she didn’t follow instructions and they didn’t know where to place her in school. So, I became her bus driver.

I became her aid. So, I would take her to school. Okay.

Stay with her at school,

bring her home from school, and then mother her throughout the night and be up in the middle of the night.

So, I did that for a very long time because I wanted her to be included.

Yeah.

Didn’t want to do all this at home. I wanted her to get services.

Absolutely.

So, finally, long story short, again, we got to the age where we were six, had her tested, and she tested positive for Sanfilippo syndrome.

Oh, wow. didn’t know what that was. We took her to MCV in Richmond. The neurologist, top neurologist there basically said, you know, we’re dealing with the situation. We get a lot of false positives. Okay. So, he says, I want you to go home and observe. So, we observed her for a year. The day after she turned seven, something happened in her brain and she started screaming, pulling her hair out

and running in the front door, out the back door, in the front door, out the back door. We had to physically hold her down for 72 hours. She never slept. So my husband and I took turns holding her down. Oh,

so that she could rest. Her heart rate was elevated. she was these children have super strength.

Super strength. She just kept bucking to get away.

Finally, it took us 72 hours to get her an appointment to be seen.

Wow.

I was black and blue,

bloody. She was bloody. My husband, we just

It was rough. We had to put her in a Pack ‘n Play. We tried everything we could because she was hurting herself.

Yes. Yes.

She was It was like she was trying to run away with what was ever going on.

It was so heartbreaking and all cry cry and cry. And so my other kids was terrified.

So that would make Rachel was seven, Amanda would have been nine, Joe was 11, and Ray was 12.

Wow.

So finally got her into MCV. And while we were there, they had given her adult strength, Haldol and Valium because they wanted to do a spinal tap. They wanted to do whatever they could do to f to say yes. Is this a positive positive?

Right. Right.

The cardiologist pulled the plug and said, “No, we’re going to say it’s a positive because you’ll have she’ll have a heart attack. We’re not giving her that much.”

Okay. So then she was there for in that facility for a week and then finally they decided the only thing we can do is put her in children’s hospital

and find medication to calm her down because they couldn’t calm her down. She was out.

Oh wow.

And that was so heartbreaking because

Sure.

It was like she was in a padded cell. Oh,

she was in like a cot in a rubber room

where they had to get buy medication to give her. So, and we couldn’t visit. We had visiting hours.

Oh, wow. Really?

No, we were only allowed to visit like maybe every other day for maybe an hour because

Let me ask the why. Why did Why would they not let the parents visit? Well, we could visit for once an a one hour because they’re trying to get a medication plan that we can go home with.

Oh, I gotcha. Okay. They were afraid it’s going to disrupt something and Okay.

All right.

It was absolutely torture.

Torture. I mean, because I was the mom, the bus driver, the aid. I was with her 247.

Yes.

So, anyway, she we finally got to bring her home. And when we brought her home, she had no speech at all.

She just

no speech whatsoever. So my daughter Amanda, which was best friends with her sister,

Yeah.

was devastated to the point that we had to get her counseling.

Yes.

She had to go straight to counseling. And I was just faced with the doctor saying she has Sanfilippo syndrome. we do not know anything about it. Here is a pamphlet. A lot of parents institutionalize their children.

So, we’re sorry, but follow this medication routine. The medication was just to calm her down. It was to do nothing. There’s no cure.

Yeah,

there is no cure. She will live to 14 or 16.

Now, here she’s already seven. So now I’m hearing that I’m only going to have her for seven, nine more years.

Yes.

It was the worst experience of our entire life.

Sure. Oh, sure. Wow.

We came home and I think in the very very beginning you have to just face the reality of what you just heard

and you’re just not even praying truthfully. You’re just screaming out, “Dear God, help me. God, what do we do? Oh, God.”

Right. Right.

In the meantime, I have three other children.

Yeah.

That are involved in many things,

and I don’t want to disrupt their lives any more than they’re already disrupted.

Right. Right. I think probably for the first that was July that took place. I would say the rest of the summer into fall I was just a zombie. I don’t I truly don’t remember a lot.

I don’t I have a lot of moments where I’m I’ve just blacked out. I don’t remember.

Sure. I know. I know. I never slept.

My husband works shift work. So when he was off, he would help me with her and then or I would go for a walk or go to Jazzercise or whatever.

Yes. Back in the Jazzercise days.

And then when he was working, I was on plus being the mother of

three other children.

Right. Right. So, I remember coming out of that season, we had to we lived in a three-bedroom home and we had to give our room to our sons,

okay?

And we put Rachel in the boys’ room and we had to pad it,

okay?

Add the window,

block all the outlets, mattress on the floor,

okay? no furniture, just stuffed animals, nothing she could chew and choke on.

and then my husband and I didn’t have a bedroom. We slept in the family room.

Okay,

that went on. But that went on for quite a while because she had to be by herself. She could hurt herself. And in her sister’s room, where the room where she shared,

it was just too dangerous.

Now, at this point, she’s not steady on her feet.

Okay. the disease attacked her brain so quickly. It’s it causes cortical atrophy. It takes your brain and it just like squeezes it.

You know, it’s kind of like childhood dementia.

Yes.

A child.

Wow. Oh.

So anyways,

I’m trying to, you know, keep my boys were super athletically involved and instrumentally involved and then I had my daughter who was involved in theater and

her things. And so I remember praying, my husband and I prayed and I and I said, “We’re never going to make it if we don’t figure out a game plan.”

And I remember really just because I was so angry with God,

right?

I was so angry. I just thought, “How? How? Why you I just

and I know we live in a fallen world. I knew all the answers, but I still asked.

Still normal. That’s

still I was still really hurt by him.

Yes.

Felt rejected.

Yes.

I felt neglected. I felt like he never heard me.

Right.

Felt abandoned.

And everyone got to go out and do their thing and live their life. He got to go to work. They were going to school. And I was,

and this sounds terrible, but my life was no more,

right? Well,

absolutely. Yes.

Basically, no more from the time she was born just because we were she was constantly sick,

right?

And I’d had to cancel a lot of things because she was always so sick.

So, my husband and I, one night, we were in our room. We just started praying. God, we need answers. God, this is this is what the rubber is meeting the road,

right?

I have no answers. I don’t know what to do.

Do I put her in school?

Do I enter her back into society like this?

They accept her.

Yeah.

there’s no place for her. This is rare. What do I say?

She who what do I say it is? And you know, everyone knows Down syndrome and you know cerebral palsy and all the different things. Everybody knows those things.

But what do I say? What do I do?

We had to move. That was the first thing we had to do.

Okay.

We had to have some sort of normalcy.

Yeah.

We had no money.

Our a lot of Rachel’s studies were out of pocket. The insurance didn’t cover them because the insurance company didn’t know what that what it was. Wow.

One urine test was $10,000.

Oh my word.

Because it was research.

They’re looking for something. So, we had no money. We were literally

And of course, now I’m not working. See, I became a nurse so I could be a school nurse.

Okay. You know, that was the plan.

Yeah. Yeah.

You know, we got married and had lots of plans, but they weren’t God’s plans.

Yeah. There’s something to say about that,

right?

Anyway, I we needed to move. We needed to pray. God, please provide. So, my sister’s father-in-law was a builder. We sat down. We met with him. We said, “Look, we need help. We don’t have money for another house.

We need to keep our mortgage as close to the one that is now.”

Right. Right.

He agreed to help us as best we could. My husband is he is the jack of all trades. He’s amazing and everything, but he did a lot of construction,

okay,

on our home. So, they got they whisked us in this house as quick as they could. Literally bare bones. Build a trade. No finished basement,

but it had four bedrooms.

Thank the Lord. Yes,

that was the goal. Get us in,

you know, and you know, that was the goal. It was at 19 97.

Okay.

Just get us in. get us in this house. So he did. We chose we what we did with Rachel’s room, we masterminded the electricity so that for code you have to have you have to have the room electrically involved. So all of her lower electricity was turned off by one switch in the garage and the upper is what followed code.

I gotcha. Okay.

But anyway, we had to make it racial proof.

Right. So we did that matt just a mattress on the floor, padding where we needed it. Thank God. So this became my sanctuary. Her room became my prayer closet.

Oh wow.

And when my husband and I would go in there and we would pray, that was the place because we wanted to involve her. When we moved here, I had a better understanding of God. I was still angry,

wrong, it took me a long time not to be angry,

but I had nobody else to go to about this,

right?

So, it’s kind of like I’m really mad at you, but I have to talk to you.

You know, I didn’t just,

you know, hey, the Lord is God and he’s gonna

Yes.

It wasn’t like that at all.

Yes.

I still attended church. I made sure the kids went to church. We stay extremely involved in Royal Rangers, Missionettes. We did it all.

Right. Because I had because I knew I knew deep down in my heart and I know that was God that I had to keep some sort of normalcy in my life. I went to a school meeting and I was sitting in the I was sitting in the foyer.

This is a tough one. trying to find a place for her and I was sitting out in the lobby waiting to talk to the principal and I had my Bible in my hand. I just carried it

that I wasn’t really opening it,

but I knew I had to carry it.

But God says, “I want you to go to Habakkuk 2:1-3.” I said, “Okay.” I did. I read it. The vision is yet for an appointed time though it terry wait because it surely will come.

Okay.

And I studied the I studied Habakkuk and 160 times Habakkuk talks about waiting in the book.

160 times.

Wow.

And

wow.

God told him that he needed to be stationed in the tower.

Yeah.

Stationed in the watchtower. I’m like, okay. Okay. Now, my vision, of course, would be that Rachel be healed.

That was my vision.

Of course,

because that’s mother, a mother’s heart.

Yes.

But it was like I got a little nugget of something to hold on to.

It was like I got a piece of the rope. I’m holding just a thread. Okay, God. I’ll do that. I’ll do that. And so I went home and I told my husband and I said, “This is what God said. This is our scripture for Rachel.

This is her life.

We and write it plain to see.” So in my Bible, I wrote what I would love to see for her.

And her room was the watchtower.

Oh wow. So I on her wall drew a mural of a tree, a beautiful tree on a hill.

Yeah.

Gorgeous tree

because she didn’t have anything in there.

So wall and it was on the ceiling.

And then her mattress is was on the floor and then all along the wall I painted a picket fence.

And

this was our watchtower. And I put a sun. It was just very very

beautiful.

It was beautiful.

Beautiful.

And so, I knew that I knew that day when I finished painting, God said to me, I want the I want you to run the race that I’ve called you to run.

Run the race.

Do this. So, I said, okay. So, I still the only book I read was Habakkuk. I still wasn’t trusting him.

Yeah. Yeah.

And I wasn’t I just

You’re still in pain. You’re pain. I’m hurting.

So, I knew that the kids need to be involved.

We’re very close-knit family, very tight. And I knew these kids have to be involved. I invited them into everything.

Good. They came in and that was our prayer room

and they helped and they watched or they would sit with her if she was having a rough time. I would Okay, guys. I would say to the boys, “Okay, boys, go sit with Rachel. Mom’s going to cook dinner.”

Boys, the boys are in there.

Oh, how wonderful.

The kids, they just got they were just super super involved. They loved making her laugh.

They loved she would they would do silly things because she couldn’t talk anymore. It was starting to morph into a family dynamic now.

There you go.

We couldn’t go out for birthdays.

So, mom just created Okay, Joe, where do you want to go for your birthday? What would you like for your birthday? I want sushi and Japanese. Well, we didn’t have anybody that we trusted with Rachel yet.

Yeah. Right.

Didn’t have any sitters yet. So, I just took the legs off the dining room table.

I hung a bunch of things Japanese things in the room and

I made sushi in Japanese and we sat on pillows.

Oh, how wonderful. That’s creative.

And we went to Japan and that’s kind of what I started to do. Birthdays were

think think.

Yes.

And then they would be off and I would run out and go get stuff and bring it all back. And so that’s kind of what we started to do. To this day, Rachel’s not here, but we still do things like that. It became

part of the fiber.

Yes.

Our tapestry. We definitely are weaving. Still weaving. We’re not finished weaving.

Sure. Sure.

So, it was super important for Ray and I that the kids stay involved. Mhm.

So then I started to get other parents to help me with car pooling and different things like that. They were not going to miss out.

Right. Right. Good.

So at this point I’m the seizures are beginning. Grand mal seizures and you know the symptoms are just continuing and I am I’m at my wits end. And I remember crying out. No one was home. Everybody was at school or work and she had the worst seizure. I thought I was going to have to call 911 and I had, you know, I mean, being a nurse, thank God.

Yes.

Absolutely. Yes.

Out of the hospital.

but I just put the Bible on the floor

and I stood on it.

It’s all I could do. I just stood on it

and I just kept saying, “God, you said, “Stand on the word. Stand on the word.” And I know this is not what you meant, but this is all I have right now.

Yes.

I’m standing.

Yes.

And I just said, “Every word that’s in this Bible, I’m standing on it.”

And you know, I’m weak and I’m vulnerable. So right now, this is all I’ve got for you.

Yes. And he knew that. He knew that, Janet. Yes.

That he knew. He knew. then he said to me, “Apart from me, you can do nothing.”

Yeah.

Apart from me, you can do nothing. So that was the day I opened it up.

Oh, okay.

I opened it up and I in her room when she became immobile, we were able to start to bring furniture in there.

Okay. So, I had a bed. She had a TV up in the, you know, on the wall. And it just became this little 12 by13 room

became where I lived.

Yeah.

It was just where I lived. I hired people to clean.

Yeah.

So that I didn’t have to do that. And I just did with her. And I truly believe that Rachel was very ingrained in my worship.

Okay.

It’s interesting. That is a very interesting thing statement there because when she passed away and I would go to her room when there

spirit the presence.

Okay.

Gone.

Wow.

So her we were prayer partners.

Wow.

We were prayer partners. We she within herself loved the Lord and just

praise God

and I know from her inner being she knew because we’re the worship the worship music was playing

you know. Oh man, I hear you talking and I don’t think even we when we chatted when we were together at Myrtle Beach that it dawned on me that you know your entire family I mean it that is a it yes your journey because you were with her the majority of the time but that your entire family had a life-changing experience and I hear you when you said that you know you were angry with God and I think Janet that’s very normal. I mean, when you’re going through a horrific season in life, I know that’s a very normal thing, but so would you say when we talk about this season that you’re going through because I mean she sounds like such an incredible young lady and I know it had to be heartbreaking and just again I’m thinking about the anger and everything all the emotions that come with that kind of a situation, but what strengthened you because you’re angry with God. So, and yet I know God supernaturally helps people, but how did you find the strength to get through that season?

Because I loved her so much.

The love for her. There you go.

I loved her so much and I was not willing

to give up on her.

Yeah.

I would not.

And if this is how our life was going to be,

Yeah. then I was going to love her the best way I could and include her in every family situation

because she was still part of our family.

Yes.

And I just desired to unconditionally love regardless

right

of whatever

that gets you through. Yes.

It’s got me through. And then

love for my family.

Yeah. Love

and I loved my husband. And

it broke my heart

to see him so sad.

Even though I was, but it just broke my heart to see him like that.

Yeah. The emotions. Yeah.

It was just really hard.

Hard hard season. Not many people understand what you went through and thankfully they don’t. So you have nobody else to go to. So God had to hear it all. And he and I remember when I was really ill years ago and I became really angry with the Lord. Something my late husband said to me at the time he was still with me. He said, “Lana,”

he said, “God understands that you don’t understand. He’s big enough to hear what you have to say.” Because I kept I would be angry and then I’d start crying and say, “Forgive me.” Then I get ang life. But with your anger with the Lord and I know again it doesn’t happen overnight but how did you eventually overcome that emotion and I know because it is a very common emotion where when we go through something like that you know the harder the situation of course I think the more anger but how did you get through that you know what were their steps or was it just something that happened gradually and you read your Bible more and more how would you explain that

I said to God there’s, you know, the word talks a lot about joy,

the joy of the Lord being our strength.

Yes.

And I could be happy. I could choose happy and I could choose to make happy moments,

but I knew I lacked joy.

I lacked joy. And I remember praying fervently for God to super to give me supernatural joy.

Yes. Yes.

I had and I it was a quest and I because I would tell tell him look if you don’t give me supernatural joy I do not think I can make this

Yeah.

work

because you know at this point I’m not sleeping.

I’m having to take sleeping pills. Wow.

I am sleeping with a monitor right by my ear. She’s having seizures through the night. She’s choking. I’m having to go suction her.

Wow.

I had to sleep in there. so I’m sleep-deprived. I’m exhausted.

I’m anxious.

I’m not the best version of me and I wanted to be sure

the best version of me for my children. I just prayed supernaturally for joy and then I just expected that he would do it. And so

I don’t know. And that this is so funny because I don’t know how long I had it, but one day I realized, huh, really have joy

in the I have and it was so wild because

I would not go ha have mother-daughter pictures taken with Amanda, Rachel, and myself until Rachel was healed because I wanted that. so bad.

Yes.

So I was depriving my daughter,

right,

so the day that I realized that I had joy,

I thought, okay, I called up the picture place at the mall and I scheduled a fun mother-daughter photo shoot

and I thought I felt no guilt. I felt great and I think it was the best thing that we could have done.

Yes. And so I so I never lost that joy. I kept it.

Thank the Lord. Yeah.

However, with joy still comes heartache.

Sure.

Sadness and grief and you know, it broke my heart watching her

Sure. Sure. Yeah.

decline and the things that had to happen. But yeah, it was just a supernatural thing that God did for me. So at that point, I just leaned heavier.

Yes.

Leaned in. I was able to lean in because I he had given me something that I couldn’t conjure up myself.

Right. Right.

There’s no way I could have done that.

Yeah. When as Rachel got older, the miracle that you shared with me was I would like you to tell the story about the miracle about they only expected her to live to a certain age. And how old was she then? So they said 14 to 16 and she was two months shy of 25.

20. Yes. That’s a miracle.

Yeah. It was a miracle. We had a lot of miracles along the way with Rachel. with Sanfilippo syndrome. There’s a lot of hospital stays.

There’s a lot of pneumonia. Oh.

tra they get TRA,

a lot of things, preventative things. And I had a pediatrician that was wonderful, who worked really well with me and trusted me and allowed me to do a lot of things for her.

the only time she other than the diagnosis, the only other time she was in the hospital was when she got her feeding tube.

Okay. And that was just an outpatient procedure. And then of course at the end of her life,

yeah,

she was in the hospital.

Wow. That is a miracle.

I mean, and you know, like in the introduction where I where like we’re talking about you being a nurse, God truly truly had this in your journey. There’s no doubt. I mean, you amaze me, Janet. I’m just saying that what you’ve gone through have must have created such a warrior woman in you.

Well, I was because that was my girl baby and that you become a mama bear.

Yeah. Yeah. Wow. Wow. Wow. Wow. So, in this journey what would you say because of course the name of the podcast is COMPASS in the Storm. If I were to say to you Janet, what would have been your compass? What kept you? What one thing navigated you through the storm more than anything else?

I would say an open heart.

Open heart. Okay, that’s

an open heart. I

Good.

I kept my heart open to hear because when we were in within the journey and I realized that God what God’s plan truly was had I had a closed heart, I would not have she would not have had the beautiful final days that she did have.

Okay. Yeah.

Your heart is open to hear the Lord.

Yeah.

Then things will go well with you.

Yes.

Because you’re not fighting. You’re not a salmon swimming upstream. You’re you’re you’re just going with the flow. like it or not.

Yeah.

You know, because it was not a like.

Wow. Wow. That’s great advice. That’s great. I mean, and you’re right. It’d be like a salmon going upstream because and then I think sometimes bitterness may settle in if you know if you don’t have that open heart then you get bitter and I feel that maybe someone today listening that’s going through this journey if they’re in the same position you’re in. It may not be with Sanfilippo but maybe it’s something else that they’re going through that they are at their wits end. They don’t know how they’re going to get through. and again that open heart is great. The open heart, open mind. but is there anything else you would say to that person who might be in that situation right now listening or watching this podcast?

I would say that the promises of God

are real

and God is already in the situation

before you even know there is a situation.

That’s true.

He is in it. Yeah.

And because he is in it, your obligation at this point to him, being a child of faith, is to trust him,

which is hard.

Absolutely.

You know, it’s hard, but you’ve got to What I learned was, okay, get it out of your system. You know, I used to always tell my kids when they were young, okay, guys, you have All right, I know you’re really upset about this.

Right. Right.

But God’s in charge. He’s He’s here. God’s got this. So, you can give Satan five minutes. So, go rant and rave for five minutes. Then when you come back, we’re going to pray.

There you go.

Invite God into the situation. So, I mean, I know I took longer than five minutes, but it is just keeping your heart open to the Lord.

Yes. knowing he’s not finished.

Yes.

Not finished. And

the biggest thing, forgive people.

Forgive people.

Don’t carry around anything because they don’t understand your situation. And there have been so there were so many people that were so hurtful

and I could have carried that bitterness with me, but that’s not going to do me any good.

So I felt like I had to live a life of forgiving people.

Right. Right.

No. I mean I had people tell me, “Oh, you need to put her in an institution.”

Oh. Oh, wow. to you know or you know I mean I even had somebody after she passed away the very day say oh now you have free time

oh

you have to forgive

they just don’t understand you can’t you can’t hang on to that

right that’s great Janet that I can’t tell you just what you’ve said this last five minutes 10 minutes has just been awesome and I hope that the listeners know that this kind of wisdom that you’re offering can only be found with someone who has traveled the journey

and you can only learn by going through it and your words of wisdom. So I hope those of you listening will glean from Janet’s experience because it’s such valuable wisdom and not in life in general just in life in general it does not come without a price. Your wisdom, Janet, did not come without a price. And I want to thank you so much for sharing. I know I know it’s bittersweet. You miss Rachel. I know you love talking about her, yet I know your heart still yearns for her. I am sure. But just a wealth of information, Janet. And you know, Rachel’s Rachel’s in heaven now. And she is fully completely whole. And the next time you see her, she’s going to be a totally different child. But but we do still I know that we’re talking about the team Sanfilippo. So if people listening to this and especially they don’t understand it because I know I never understood it till I talked with you but they do want to help. tell us a little bit about the team San Philippo. I think I’m saying it right.

Yes you are. So basically it is a it’s a very strong support network now and they’ve got Facebook they’ve got web websites and a lot gather from all over and they’ll have functions okay

and they’ll have fundraisers to try to find a cure. are really working hard to try to find a cure and they are doing some studies now experimental things they I don’t think they have found anything yet but okay

they are doing bone marrow transplants I’ve heard of one of I’ve heard of that and different medications so they definitely need

more people to participate in the fundraisers to raise money

great okay and I thank you and I we’ll put that link in the podcast and I do encourage any of our listeners to feel if they feel inclined, which I hope they do, to consider donating to team Sanfilippo cuz I know you know it tragically robs families. I’m sure that you guys have become pillars just of the Lord and that experience has to create with the faith that you have and your husband and your children. This is kind of interesting because I thought about this. You know, little Rachel continues to be that little evangelist. You know, we’re talking about her being evangelist through her testimony and so do you.

Cuz all my children are married. They all serve the Lord. My daughter is a

wonderful.

But they all said that they are who they are because of Rachel.

All of them.

There you go.

Even the in-laws.

Wow. They all said because of Rachel because all of them were here when Rachel was still with us. She passed away in 2011.

Right. Right.

So that’s just to me,

you know, Lana, everything we’ve been through, all the turmoil, just to see

where my kids are now and how they serve the Lord

and how their kids

Yeah.

love Jesus.

Yes.

And serve the Lord. It’s just like God,

thank you. Thank you.

Wow, that’s awesome. That’s awesome. You’ve got a beautiful, you know, it’s a horrific journey. It was a horrible a horrible experience. Although you love your daughter, but it was just hard. But again, you are like diamonds. You guys, the Lord, you know, that pressure that makes the diamonds, you know, you guys are those diamonds that are now shining so bright for the Lord. And thank you so much for sharing and again, God bless you, your family, and I know he is and will continue to. But thank you so much. I appreciate it.

It was wonderful. Thank you,

friend. Sometimes our pain is so great that it blinds us to God’s love for us. In Matthew 27, when Jesus is hanging on the cross, painfully dying a slow death for you and me, he cried out, “My God, my God, why have you forsaken me?” But friend, God did not forsake his son, Jesus. It was the pain of the world on Jesus as he hung on that cross that prevented him from feeling the presence of God. Our pain just hurts too bad. When our hearts hurt, when you feel deep pain from loss, grief, betrayal, and other agonizing emotions, it will blind you for a while. But it’s in those times that we need to remember to call on God. He is still there with you. He still hears you, even if you feel he’s nowhere to be found. Psalm 145:18 says, “The Lord is close to all who call on him. He will get you through. He will walk with you through the storm. He has great arms of strength and love that will uphold you and help you. All you need to do is ask.” I pray you’ll experience his loving arms around you today, my friend. You don’t have to walk your journey alone. Let him walk with you. Thank you for joining me today and I trust you received hope and encouragement. I look forward to you joining me on the next COMPASS in the Storm. Until then, God bless you and remember friend, stay the course.