Lisa

 From left to right: Lauryn (10), Keaton (4), Lisa (43), Aaron (45), Keily (4), Payton (8)

From left to right: Lauryn (10), Keaton (4), Lisa (43), Aaron (45), Keily (4), Payton (8)

As long as I can remember, I’ve always wanted to be a mother. Aaron and I had only been married a couple of months, when I started to beg to have children. Just after our one year wedding anniversary we found out we were expecting our first child.  Taylor was born December 29, 1995.  I remember sitting on the couch one day next to Aaron, I had Taylor in my arms and I thought, This is all I’ve ever wanted. I’m so happy!

Taylor developed typically. We thought he’d walk by 12 months, but at 15 months he still wasn’t walking. At about 18 months, he started to walk , but not very well. My Mom & Grandma kept telling me to take him to the doctor, so I finally made an appointment with our general practitioner, and he didn’t make a big deal out of it. He said, “These things can happen, he’ll probably just grow out of it.” But Taylor continued to not progress and acted like it hurt to walk. At that point we made an appointment with an orthopedic doctor who checked all his bones, and they were fine. So they referred us to a pediatric neurologist. This process took a little time, but we finally got in to the neurologist a couple of months after he turned two years old. The doctor ordered a chromosome study and took samples of blood and urine and sent them back east, checking for many diseases. A nurse called me on Friday and said, “Nine of the ten tests are negative, and so everything looks good so far. We’re just waiting on that last test to come back, and we’ll let you know once we find out the results.” Monday rolled around and the nurse called back and said, “The doctor would like to see you tomorrow.”

My heart knew that that probably wasn’t going to be a good meeting. Something inside me told me that Taylor would die. The next day we went to see the doctor. He told us our son had Metachromatic Leukodystrophy (MLD). The first thing I said, was “Can you spell that?” He told us Taylor would start to lose all of his physical abilities, that it was a terminal disease, and that it was genetic. He said that they wanted to test Aaron and I to confirm the diagnosis.  They took blood from us and sent that off. After a couple of weeks the results came back and confirmed that yes, Aaron and I we were both carriers of MLD.

We had a lot of questions and a lot uncertainty at that time. I knew Taylor would revert back to an infantile state, but didn’t know how that would happen. I remember saying to him, “Your body has a disease. Do you know what it means to die?” He got a huge smile on his face and said, “I get to give Jesus a hug.”  I had no idea that he had any kind of comprehension like that. Any time death or dying came up after that, he’d smile. 

By August, 6 months after his diagnosis, he lost the ability to walk, sit, crawl, scoot, roll, talk, and eat. I remember days that I would listen to him say in a quiet voice, “Mom” I kept thinking, “Is this the last time I’ll hear his voice?” I remember the heartache through that time of not knowing when it would be the last time. I remember it being a gradual death, there were so many losses compounded. He seemed to die a little bit more every day. If you could imagine losing all of your physical abilities gradually but still keeping your cognitive functions, it would just imprison you in your own body. I don’t think there would be a worse situation to be in, that I can think of.

Another part of the disease was that Taylor was very irritable; because how can a two year old comprehend what was happening to his body. It’s also a very painful disease. We put him in physical rehabilitation, but we didn’t realize how painful it was for him. His body would have seizures. I remember him sitting in his car seat and he would just scream and scream and scream. He didn’t want to go to rehab and would say, “Owie, mama.” I just thought I was doing the best thing for him, but I didn’t realize it was actually hurting him more. I remember a lot of sad, hard days during that time. 

Taylor had lost the ability to chew food & to suck (he absolutely loved his binky, it broke my heart to watch him lose the comfort it provided him) so we cut off the top of the nipple on a bottle to feed him Pediasure. A bottle would take hours, and he would cry and cry.  He was so hungry and I could hear his tummy growling as I was trying to feed him. It was a very helpless time. In December of that year, we had a feeding tube placed and a surgery (Nissen Fundoplication) to keep his food in his stomach and not come back up through his esophagus.  That was a tremendous blessing for him to be able to feel full again. He slept much better after that and my heart was much more content, knowing that I could feed him again.  We also found out about some medications that would help ease his anxiety and pain, those helped tremendously to relieve his discomfort and my helplessness.

About a month after Taylor was diagnosed, we found out we were expecting our second child, and we were thrilled. We had spoken with a geneticist and there was a 75% chance that another child wouldn’t have the disease. So in my mind, I thought we’d be okay.  Our second child is named Alyssa and she was born February 6, 1999. Taylor had just turned three in December and she was born in February. We were so excited and I remember looking at her thinking, she looks just like Taylor. What a blessing she was. She was also tested for MLD, and her blood and urine was sent back East. About two weeks later, we got the call back that yes, she was in fact affected with the disease as well.

I wasn’t expecting this. I was obviously sad and didn’t want to go through this again, but the thought kept coming to me:  Count your blessings. And so instead of looking at this disease like a curse, I decided to look at it as a blessing and decided to make each day the best that I possibly could, for these children. And to love them and care for them, and help them experience life to the fullest, even though it was going to be short. We were going to make the best of it. This change in attitude did a tremendous thing for me. I went from a victim, to a survivor, in that it was my job and part of the motherhood that I had been given, to help these children experience life and find joy in life. We did so many fun things together. They had an amazing bond, Taylor and Alyssa. They lived life through each other. That was a fun time with the two of them. We went to Disneyland, and on several trips together, and had so much fun!

I remember watching Alyssa watch Taylor have seizures or when he was hurting. She’d walk over to him and put her hand on him and say, “Lax, Taylor.” (Relax, Taylor.) I also remember seeing the sadness in Alyssa’s eyes as she watched Taylor, as if she knew that this was coming for her as well. 

Aaron’s work is such that he is busy during the summer time, and he was gone a lot during this time of Taylor’s death process and Alyssa’s digression. I was prideful at the time, and I did most everything by myself and didn’t allow many, outside of family and close friends to come in to help me. I felt like I needed to do this myself and felt like it was my duty. As we went through this heart wrenching summer as Taylor’s body was dying and Alyssa’s body was digressing. One day, Taylor’s body went into a coma.  We knew that this typically means death is imminent.  Aaron came home from work, Taylor heard the garage door open, and he knew that Dad was home, even though he was in the coma. He started Cheyne-Stoking, which is a type of breathing when your body gets closer to death. It’s like holding your breath for long periods of time and then a loud gurgle over the vocal cords as you start to exhale. He did that for 20-30 minutes and Aaron and I sat holding him together. We were both holding him as he took one last sigh and died in our arms, so peacefully. I was very grateful that he didn’t have to suffer anymore. I remember Aaron calling the mortuary and we called all of our family to come say goodbye to him.  I remember how hard it was to watch them take my child that I had cared for day and night, for five and a half years out of my home.  Taylor died August 20, 2001.

After Taylor died, Alyssa became very depressed because they had lived life through each other. She was not happy with that disease and not happy that it took her brother.  She had her best friend in the world pass away on her. I don’t think she could really comprehend where he went. I’m sure she also felt how sad that I was as well. At this point, she had lost all her physical abilities and was like an infant again. She was very angry with the disease and wouldn’t eat. When she got down to 18 pounds. We started medications and had an NG tube placed to feed her and help her feel more content. We did surgery (G-tube and Nissen Fundoplication) in December of that year (2001). She had pneumonia at the time of the surgery. The anesthesiologist and doctor were hesitant to perform the surgery, but we explained to them she had a terminal disease and needed to have this surgery done. I remember she came out of surgery and went to the NICU. She didn’t stay long, she blew them away, she had such a strong and resilient spirit. She was a fighter.

In April, I went into her bedroom one morning and her oxygen was in the 70’s.  It was supposed to be in the 90’s. We called hospice and they brought us oxygen. We could tell that Alyssa was starting to show some signs of impending death and so we talked to the hospice people and Aaron and I discussed it, and we decided we needed to stop her foods so that we didn’t cause her pain like we had with Taylor.

Alyssa went into a coma. She kept going and going and didn’t have food (we learned that their bodies cannot process food when they are dying). She had water and medication because one of the hospice workers told me dehydration would be a horrible death. So for 6 weeks, she was in a coma.

I remember feeling so helpless and I remember telling her it was okay to go. But in my heart of hearts, I knew after she went I wouldn’t be a mother anymore. And I knew that she kept holding out for me. On a Wednesday we called “the death doctor.” That’s what we called him. He was a doctor who cared for people who were dying, and he had helped us with Taylor. I was holding Alyssa while I chatted with him and told him I felt like I was killing her not giving her food.  He assured me that I was not and that I needed to let her go and hold on to the good memories.  He explained that we needed to stop the water and meds and that in fact her body would not feel any discomfort and she would not have a horrible death. Friday came, and we weren’t going to do her water and medication that night. I was holding her on the couch and Aaron was up at the counter doing bills. She started into the Cheyne-Stoking, and I could tell that she was going. So he came over and we both held her. What an amazing child; she died before we didn’t have to withhold the water and medication because she knew that we didn’t want to do that. Alyssa died (3 years old) May 17, 2002, 9 months after Taylor.

Her spirit was just amazing to me, that she loved us that much, to sacrifice her own health and well-being to care for us, in essence. After she died that night, I remember them bringing the gurney in and her laying on it. I was getting her all situated, she was such a beautiful little girl. I remember the mortician that came to take her… you could see the torment in his eyes. He said, “I have three little girls. I can’t imagine the pain you must be going through. I will take such good care of her.” I remember him driving away.  It was in the middle of the night in May, and Aaron and I just sat on the porch together for hours. It was such a surreal feeling. We weren’t quite sure what to do now or where our life was going to go.

I remember that summer after Alyssa passed away I was home alone a lot because Aaron was working. People would ask me, “What are you going to do now?” “Are you going back to work?” I just told them I was going to grieve. I knew that was important for my health, and I thought it would maybe take me a year. So I gave myself a year, because that was how long I thought I would need. I was very naïve in this. So that summer, I remember having a goal to get up at 6:00 am to go walking to get myself going, and I would also take a lot of naps, because there were days I was exhausted. But I also remember writing down a list of goals. Things I wanted to accomplish, because I knew I needed to be productive with my time. That helped give me direction during that time. I used some of that time to be a hospice volunteer. It was a good experience, but I don’t know if I was quite ready for that at the time. I wanted to give back. So many people had given us and done so much for us.

My innate self, my spirit, wanted more children and I fought that because I didn’t want to experience that loss again. I didn’t want to watch a child in pain. I didn’t want to do that again. But through some sacred experiences and through a lot of thought and prayer, we decided to try again for another child. I love being pregnant; I love feeling life inside of me. I remember telling Aaron so many times, “It’s a miracle!” To feel that life inside of you is such a beautiful gift. It was such a joy. I worked through that time and so time went by fast. There were risks involved in testing her before she was born, so we opted not to have her tested while I was pregnant, and to test her at birth. Two years after Alyssa died, our sweet Ellie was born March 28, 2004.

I remember it was 9 days after she was born. The doctor called and told us that she also had Metachromatic Leukodystrophy. This time, I remember feeling very angry.  I thought, why in the world, for what purpose, could we need to have three children with this disease? Especially with our odds that each child had a 75% chance that they would not have this disease.

At that time I remember reading from my journal that I had written with Taylor and Alyssa, and from my own words I knew that I had the strength to do this again. I would help her to have a good life. Ellie was such a joy; another beautiful gift. She loved people and they loved her!

When Ellie was about 18 months, we had a huge shock and found out we were expecting another child. We hadn’t anticipated that. We went into this pregnancy thinking this one would probably have MLD as well. June 4, 2006 our fourth Lauryn was born, just as Ellie was starting to digress.  Lauryn was born 6 weeks early and needed to be in the NICU for 3 weeks, this was another heart wrenching and challenging time. Lauryn was in the NICU and I would go to visit twice a day, but I also had Ellie who was losing all of her physical abilities. I always felt like I was neglecting one or the other. And that was very difficult for me.

As Ellie’s third birthday approached I bought her a crown and asked her if she wanted to have a princess party (her nickname was princess). She would just stare at me, and I could tell she just wasn’t happy about it.  Finally I said, “You don’t want to be three? You don’t want to have a party?” And she gave me a moan and yes with her eyes. I was so confused by this.  I had anticipated her living longer like Taylor had, but hadn’t taken into consideration that she had had pneumonia as an infant and many respiratory infections as a toddler. Her lungs weren’t strong enough, and she knew it.  As I listened to her more and watched her more, I started seeing signs of death. I quit talking about her three year-old princess party and started to pray that I would be able to let her go. I was very well aware of what grief was and had experienced more than I had wanted to at this point.

One night, Aaron was there, and a chaplain from hospice was there. It seemed imminent that she was going. She had gone into a coma, and she was gray. I started to tell the chaplain about her life and about how she loved people, and at that moment she kind of perked back up a little. She stayed in the coma, but her color came back. I just had the thought, she hasn’t had time to say goodbye. Ellie allowed so many people into her life, and she hadn’t had the chance to say goodbye. For two days, we had many friends and family come through our home and say goodbye to her. It was so tangible that you could feel her spirit telling everyone goodbye. 

She had been in a coma for about a week. I remember one night feeling very emotionally exhausted. Ellie’s alarms for her oxygen kept going off, and I felt like I couldn’t keep doing this. Aaron and I decided to sit up with her that night. We went out on the couch and settled in for the night, and she started her death process.  Ellie passed away peacefully March 16, 2007, 12 days before her 3rd birthday.  I was amazed at these children, of the love that they had for us, that they would share their death process with us, and wait until we were ready. What a blessing to be able to be there as their spirits came into this world and also departed from this world.

When Lauryn was born, we had her tested for Metachromatic Leukodystrophy. This time the doctor didn’t call. I was very anxious, because I was waiting to hear if my child was going to live or die. So this time, I called. The nurse read the diagnosis to me, and said, “No, she doesn’t have this disease.” I didn’t quite know what to do with that. I said, “Can you fax it to me, because I don’t think I believe that.” They faxed the diagnosis to me, and I read it over and over and over. You would’ve thought that I would’ve been ecstatic. But it was really a feeling of bittersweet because of the love that I had for these sweet, sick children. I knew how to do sick really well. But I didn’t know how to do a healthy child. So I felt a tremendous responsibility in caring for her and teaching her. But I was excited too and so happy to have her.

We call Lauryn “sunshine”.  That’s her nickname. She truly is a packet of sunshine given to us that we so desperately needed after many long years of sick and dying children. We have always wanted a large family, so we had started looking into adoption, even before Lauryn was born. It just felt like a good thing to do; a good different avenue for us. We ended up adopting our adorable son Payton (Born April 3, 2008), and then darling Keily (Born January 21, 2012), and then cute Keaton (Born March 27, 2012). I had never imagined adoption to be such a blessing. It’s hard to put into words the perfect joy that comes from being able to adopt. As we’ve adopted them, I’ve always said they’re not a replacement for our other children, but an addition to. We have seven children and we’re grateful for each one. I’ve heard that you only know as much joy as you know sorrow. I have known a tremendous amount of sorrow, but I also know a tremendous amount of joy! Each of my children is such a joy and I feel so blessed to be their mother.

What are some of the biggest lessons you learned through all of this?

I know that “faith and fear cannot coexist”. After Taylor was diagnosed, I was very fearful of the unknown.  I kept having the thought, “Learn of Me”.  So, I delved into an in-depth personal study of Christ. It increased my faith tremendously to focus on living like Christ, and helped to suppress my fear by relying on Him. My fear didn’t completely subside, and there were times where I struggled, but it helped.  I also live by the saying, “If you are prepared, you shall not fear.” Experiences with Alyssa taught me that we cannot have faith without hope. My hope for a brighter day with them increased my faith that I will live with them again.

At a really difficult point in my life, after Ellie died, I was dealing with a lot of anger in my grief process, I was very sensitive to people’s comments. I’ve learned that no one ever tries to hurt you. Everyone is well intended, but sometimes it doesn’t come out the right way, and we tend to take things personally, or the wrong way. So that is when I studied charity, and the pure love of Christ, and how I could be charitable towards others who were hurting me, or saying things that hurt me.

All in all, Taylor taught me Faith, Alyssa taught me Hope, and Ellie taught me Charity. Each child brought a different gift to me. With Alyssa, I started a gratitude journal for me, and also my mom gave me the idea to write one about Aaron. Marriage is difficult, and then adding disease and death on top of it, compounds it. It’s easy to blame each other for things. When I started Aaron’s gratitude journal, it was really tricky to think of things. The first few days/weeks, I really had to think hard of things to write about him. But I went from one or two sentences, to pages and pages of things I could write about him and how grateful I was for him. I looked for his positives and for what he was doing to help us. I was able to put that positive spin on it, and this was a huge blessing, in both of our lives. I wrote in Aaron’s journal every day for a year and gave it to him for Christmas. Those journals helped me so much to enjoy every day, and look for the good. No matter how low you feel, there is always something you can find to be grateful for.

What would you say to being on the receiving end of service and accepting help from others in the midst of a trial?

I was on the receiving end of service for so many years, and it was really hard for me to accept other’s help in the beginning. I was stubborn at first, and still am sometimes. I just felt like throughout all of this, it was my responsibility, my duty, to care for them. What I came to learn from being on the receiving end, is that it is vital for us to accept help from others because it helps us develop humility. I learned a lot about pride, and that I had a huge amount of pride, and letting others serve us, helps strip us of some of that pride and softens us. As we serve others, we are serving our Savior. People had done so much for me, but ultimately Christ was carrying me, through years and years and years of hard days. That was the only thing I could do to give back to Him at that time was to allow others to serve me.

After Taylor and Alyssa died I had a lot of time and I wanted to give back and serve the people who served me. I wanted so badly to pay those people back. However, I learned the best way to give back, is to pay it forward. This goes right back to Christ; He atoned for us freely, and doesn’t ask for us to pay Him back. What he has asked of us is to comfort those that need comfort, and mourn with those who mourn. I learned that those are the things that He needs me to do. His plan is much higher than mine.

What things did people do or give, that helped you the most during this time?

I’ve learned the best gift that we can give to people is a listening ear. People were so kind and generous to bring meals, desserts, gifts, etc… Their intention was sincere, genuine, and very much appreciated. But the times when I had a friend sit down and just listen to me, was the best gift. 

Did opening up to people, help in your healing process?

After Ellie, our third child had died, I realized how much grief I had suppressed, and that I really needed help. I had gone to grief groups, which were very helpful, especially in the fact that those in the groups helped me to feel that I was not alone experiencing grief. But at this time I realized I needed a personal counselor. I called her my “listener,” and it was the best thing ever for me. She’d just listen to me, and then give me five minutes of counsel, which I really needed. It was then that I realized that Christ needed help in the Garden of Gethsemane. And if I really wanted to be like Him, then I needed to accept help. I grew leaps and bounds. She taught me that grief comes in waves, and that I was running from the waves. She taught me to embrace the waves and let them wash over me instead of run from them as I had been doing in the past. Being able to open up to my counselor and others has been a key factor in helping my heart to heal.  I am especially grateful for Aaron and the hours upon hours that he has listened to me.

What do you want people to take from your experience?

I’ve learned how important it is to try to embrace whatever circumstance we are in and learn from it. Knowing that no matter how hard or devastating our circumstance may seem, time keeps rolling and this too shall pass. As I have experienced hard circumstances in life I’ve learned that life is 10% circumstance, and 90% attitude.  I’ve truly learned ‘mind over matter’ and to strive to look for the good in whatever circumstance I find myself in.  I truly believe that every human spirit can do hard things!  

Ultimately I’ve learned that life is a gift!  I’m very grateful to live in this dispensation of time. I’m grateful for the truths that I have learned from modern day prophets that I know to be true through my experiences with my children, including:  “Change is the only constant.” “Look outside of yourself.” “Service is very rarely convenient.” “Forget yourself, and go to work.” “Life is to be enjoyed, and not just endured.” “Find joy in the journey.” “Remember who you are, a child of God, and what your purpose is.”

I know that the children that I have been blessed with, all seven of them, are part of my purpose, and that they had and still have tremendous purposes. In the end, I always come back to gratitude. As hard as it was, and is still at times, I’m very grateful that God chose me to be their mother. They truly are heaven on earth. I would not be who I am without the amazing experiences I have had as a mother!

Interviewed on June 29, 2016: edited and approved by Lisa Holdaway prior to release.