Tell me a little bit about [your son] Claytie’s story.
Our Claytie was born on October 11, 1996. Born six weeks early, he weighed in at 3 lbs. 15 oz. We soon discovered that he had been born with Downs Syndrome. We had prayed as a family for a long time to get him here. Because of this, and premonitions before his birth, we knew that he was meant to come to our home and that he would be a blessing to our family. With our limited view, however, we had no idea of the scope or impact his life would have on us.
When just three weeks old, Claytie was diagnosed with total colonic Hirshprungs disease. This meant he was born with a dysfunctional colon. He lived with an ostomy bag for one year and then had his colon removed. His little body struggled to function with only his small bowel. But even with daily pain and frequent hospital visits, he lived life to the fullest and blessed everyone with his contagious smile and tender spirit.
When Claytie was just a newborn, we had therapists in our home to work with him and teach me exercises to do with him that would assist in his development. We also got a speech therapist to help him with his speech. They encouraged us to learn sign language that could assist in his communication until he learned to verbalize. He eventually learned over 100 signs! His physical development went so slowly. He was just four months shy of three years old when he finally started walking. He was thrilled, and so were we!
However, about 6-7 months later, he experienced a massive stroke and was unable to walk or use his right side. After being in the hospital inpatient Rehabilitation Unit for five weeks, he began to crawl and scoot around, though his one side was still affected.
He never did learn to use his right hand, but after about 5 months of scooting around he eventually learned to walk again. Despite his struggles, Claytie’s life was happy and richly blessed because of all the love showered upon him by family and friends, but mostly because of his pure, happy spirit.
After Claytie’s second stroke in 2002, he was left in a coma and remained in critical condition. We felt the need to have him be in our home with us all together. It took a couple of days to make all the arrangements, but on Tuesday, June 18th, 2002 we were able to come home with him. After resting peacefully on the couch for just two hours he slipped quietly away.
What was the adjustment like of having a child with a handicap in the home?
It was an adjustment, and quite an emotional time getting used to the fact that we had a handicapped child. You just don’t ever think you will. You’re pregnant and you just plan on all the “normal” stuff happening. I remember going to the grocery store and different places when he was about six months to a year old, and we’d get lots of stares. Some people would kind of stare and not say anything. Other people would say, “Oh, he’s so cute.” Sometimes I would think in my head, No he’s not cute. You’re just saying that to make me feel better. He’s not like other babies. There was a time I went through a little bit of anger, a little bit of “what are people thinking about him?” stage. Our neighbor had a little boy within two weeks of Claytie and it was really hard for me to watch him develop and get social and start to crawl and walk. For Claytie, everything was really slow. So I think with having a handicapped child, there can for sure be phases like that.
In his lifetime, Claytie was hospitalized 22 times, underwent 6 surgeries, about a dozen transfusions, two massive strokes, hundreds of Occupational, Physical, and Speech Therapy sessions, as well as daily abdominal cramping and pain due to his bowel disease. Needless to say, the staff at Primary Children’s Medical Center and Shriner’s Hospital became some of his best friends and we couldn’t have done it without them.
My other kids went through varying experiences. While Claytie was still in the hospital after he was first born, [my son] Jake had an experience where he was at school and saw a child with Downs Syndrome who walked past him in the hall. Several kids were making fun of him. He thought, “I have a brother that is going to be like that, and people are going to make fun of him.” When he shared it with us that night he just cried. However, Claytie blessed our family so much. My kids saw people in a different way. Having a sibling with Downs Syndrome helped them to view other kids with handicaps in a different way and treat everyone better.
What are some of your favorite memories of him?
Each morning and night that our family knelt for prayers, he would say, “Me, me, me” and want to say the prayer. We’d help him—we’d say, “Heavenly Father,” and he’d say, “er”… “Thanks for this day”, “ay”, “Thanks for the food”, “ood”, and so on. Then he’d go through each member of the family starting with Ty—“Aye”, “Ed”, “Ann”, “Em”, “Ace” (Ty, Jake- who he pronounced “Ed”, Ann, Emily, Grace.)
I also remember being at the dinner table, and whenever the kids would start fighting over something, Claytie’s bottom lip would start quivering. I’d say, “You guys, you’ve got to be nice, because you’re making Claytie cry.” He was our spiritual barometer. There were just little things that we could feel—his spirit, his greatness.
Would you be willing to talk a little bit about what it felt like to lose a child?
They talk about “a broken heart,” and it truly feels like that; there’s deep ache in your heart. It’s pain you can’t explain. They talk about empty arms, and I felt that too. After his death, sometimes I just had to hold something. I’d go into his room, put down the side rail to his crib, and just lay on his bed and squeeze his blankets and cry.
For the first couple of weeks, I was in a place of being supported and held up by God, and then I had a period of time where I just couldn’t be alone. For those weeks that followed, the family members would take turns coming up for the first half of the day, and then Clayt [my husband] would take over. I was a wreck. Even though I felt so much peace from the Lord, I also was feeling so much grief. I never knew those things could coexist like they did. I was raw and felt the pain of losing him, but also felt so much peace. I knew the Lord was aware of me.
Many people don’t understand what it’s like to care for a handicapped child, or a sickly child. I think many people were relieved for me, when he died. On the day of his funeral, I had two people come up to me and say, “Now you can be back in the choir.” I had previously been a member of the Mormon Tabernacle Choir. I cried so much over that. People didn’t seem to know how much I loved him. I had to realize that many people didn’t and wouldn’t ever understand, and that was really hard. Even if your child never dies, to think that people feel sorry for you for having a handicapped child and that you “don’t love that child as much,” or that it’s a pain in your life... that’s hard. And yes, it’s a lot of work, and your life is changed and different, but the bond that you have with that child is so much stronger. Because when you serve someone, like you serve a handicapped child, the bonds of charity and love are literally bonding you with them and strengthening that relationship.
After he died that summer, and as the kids went back to school that fall, I didn’t have a preschooler anymore. I was lost. It was such a hard time for me. I couldn’t talk to people; I couldn’t do laundry; I just felt awful. I kept thinking that the thing I needed to do every day was read my scriptures, pray, and stay close to the Lord. I made that commitment from the beginning. I relied on the Lord and knew He was aware of me and my grief.
Did you ever see a counselor? How did your kids deal with his loss?
Emily and Ann [my daughters] did a lot of crying and sorting through it all. Grace [my youngest] never cried. She was the one who shared a room with Claytie. But whenever we talked about Claytie and would cry, she’d leave the room and go do something else. I got a book on understanding children’s grief, and one thing it said was that sometimes kids will become more active and this helps them through their grief. Every day Grace would come home from school and kick the soccer ball against the wall. She’d kick it and kick it, and practice, and she’d be outside doing a lot of physical activity. I recognized this was something that helped her. But she and I also signed up for a grief support group at Primary Children’s Hospital. We also went to a support group at The Sharing Place. She looked forward to that and wanted to be there, because I think she knew this was a group of people who understood a little bit of what she went through.
I went to some additional grief therapy because I also got fibromyalgia the summer that he died. I felt like maybe if I did some more therapy, my fibromyalgia would go away. After about eight months of crying, and not being able to stop crying from the grief, I went to the doctor and asked him for some antidepressants. I started on those and it was a little hard for me at first. I kind of got numb and stopped feeling anything. I had feelings like I’m not crying. Do I not care about him anymore? Do I not love him anymore? All those types of thoughts came and it was hard to get through that. But the antidepressants helped and I ended up taking them for a year or two. I gradually was able to go off of them.
How did Clayt [your husband] deal with his grief?
Clayt keeps things inside. He had to be the “strong” one, or felt like he had to. His back muscles kind of seized up and he couldn’t move very well. He had this one muscle that just hurt. He ended up going to a physical therapist who actually told him it was more of a mental/emotional problem. He told him our emotions get stored up in our muscles and need to get released. He told Clayt to talk about it until he cried, while I massaged his back. So, we did. He finally cried, and sobbed, and let it all out as I massaged his back. His back problem went away. We do that often still. Now we can recognize when we’re holding our emotions in, and we’ve learned it’s important to cry, let it out, and release our emotions from the body. We talked a lot. He learned to cry occasionally. Mostly he felt like he needed to take care of me. He’s not one that is emotional, but has learned he should be sometimes. We’ve learned that together.
What is one thing you do today to celebrate Claytie?
On his birthday, October 11th, we take white balloons to the grave. Each person there shares a memory of him and lets their balloon go in the sky to fly up and give him a kiss.
What were things people did after Claytie’s death that were helpful to you?
One thing that I didn’t talk about much, was that after Claytie’s death, people would say things to me like they were trying to “fix” my grief. People wanted to make it better. There’s no fixing other people’s grief. People have to just go through it. I have a friend who during that hard time, would come over after I dropped the kids off at school, and she’d find me in my room on my bed. She would come lie on the bed without saying anything; just be with me. “Mourn with those that mourn, and comfort those that stand in need of comfort… bear one another’s burdens, that they may be light…” There were so many people who helped us through that time.
Be patient. Be patient with yourself, and with the people who don’t know what it’s like to grieve. Just smile and know that people love you. No matter what people say, they are usually trying to help, even if the things they say don’t feel like they’re “helping” you. People say the wrong things, but don’t necessarily mean to offend you.
To others who haven’t lost a child, what would you say to them in regards to talking to people who have?
Maybe to someone who hasn’t lost a child or someone who hasn’t gone through a grieving situation, I would say to not try to fix someone else’s grief, let them talk about it if they want to, be with them in their grief. Say things like, “I can’t imagine how hard this would be.”
We all have different trials. Don’t compare your trials with someone else’s. Your trials are as real to you as others are to somebody else. Let’s just have compassion for each other. Our paths, however they are, can bring us to our knees, which brings us to God, and makes us realize we can’t do this alone.
One principle I also learned was when friends used to compare and say things like, “my child was only a month old, it must’ve been so much harder when he was 5”, or “I lost my dad, I can’t imagine what it would be like to lose a child.” Or even once , a friend of mine was relating to me of some very difficult behavior issues she was having with her child and how she was struggling with it. She suddenly apologized as she had the thought that her trials seemed so trivial compared to losing a child. But I said, “No! Suffering is suffering! They are the same! And I really believe that. The more I internalize this principle, the more compassion I can have for all those around me.
Each of us seem to have our own tailor-made trials, and finding the similarities in our trials can bind us together and help us feel the empathy we each need for one another. When we compare and find the differences, that does not unify or bind our hearts. I definitely don’t always have such a clear perspective, but when I do, I can see more purpose in my own suffering and ability to be hopefully, more compassionate because of it.
Though I miss Claytie like crazy, I will be forever grateful to the Lord for his patience and love in giving me the opportunity to grow, and learn to depend on Him—To know He will always be there as I seek Him, to give me the strength to endure and the peace to understand.
Interview edited and confirmed with Denise Williams, prior to release, 7/12/16