This is part three of a series where Heather shares her story of being a mother of two daughters with chronic illness. Read part one and part two (Jewel's Story) to learn more of her story.
While Jewel was the child I prayed for, Lily was the child that I felt was a gift from God’s arms to my own. I wanted another baby, but she wasn’t planned or expected. When I realized I was pregnant with her I sat alone on our wooden steps wondering how things would ever be OK. It was 2008. We were in the throws of the recession. The unemployment rate in our county was one of the highest and reached 15%. We were both unemployed, living in a house that wasn’t ours, our baby was 18 months old and now we were pregnant again.
Once I saw the positive pregnancy test I never worried I would lose the pregnancy. I knew without a doubt that the child I was carrying was intended for greatness. She was intended for life. During my pregnancy I was afraid a lot. The recession was in full swing and it wasn't like anything I had experienced before. It seemed like everyone had lost their jobs, and their homes. One home after another became empty and ended up boarded up. My husband applied for job after job to no avail. My pregnancy was difficult and draining. I had severe morning/all day sickness that landed me in the hospital several times. We ended up on medicaid and food stamps. Two people with college educations and we were on state aid. It was a scary and unexpected time.
During my pregnancy I found comfort in the Bible verses from Matthew 6 “Therefore I tell you, do not be anxious about your life, what you will eat or drink, or about your body, what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air; they neither sow or reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value them they? ...Consider the lilies of the field, how they grow; they neither toil nor spin, yet I tell you, even Solomon in all his glory was not arrayed like one of these. But if God so clothes the grass of the field, which today is alive and tomorrow is thrown into the oven, will he not much more clothe you.” This verse often came to mind when family members would show up at our door with extra food they had, or someone would send money, or in the moments I was flooded with thankfulness for the home that wasn't ours. We seemed to always have enough. So when we were deciding on names Lily was one that was at the top of both of our lists.
When you have two babies it’s hard not to compare them, and Lily was such a different baby than Jewel had been. Lily cried all the time. She wanted to be held 24 hours a day. She nursed every hour around the clock for the first three months of her life and she didn't sleep through the night for almost a whole year. I didn’t even mind because I knew she was my last baby. I enjoyed the moments of closeness and they strengthened the bond we shared. While Jewel was independent from 2 weeks old, Lily was always with me and always sitting on my lap. Lily didn't laugh or smile much until she was 10 months old. She simply sat and watched things going on around her. At 10 months, however, it seemed she woke up. She laughed and played. She started saying a few words. By 1 year old she was walking and could say more words than I could count. I was relieved about this. It had been very strange to have a baby that didn’t talk or laugh.
At around 2 years old, Lily started being increasingly grumpy and difficult. I assumed it was the normal 2 year old growing pains. By two and a half or so she was waking up every night at 3 a.m. She would cry for me, I would hug her and she would go back to sleep. I didn’t give this a lot of thought. My husband was getting up at that time for work and I thought he was waking her up unintentionally.
Before Christmas 2011 I noticed she had a red swollen toe. It looked like she might have a bit of an ingrown toenail. I cut her toe nails and she soaked her feet in warm water and epsom salt a few times. She told me it didn’t hurt. It was Christmas time and things were so busy that her red swollen toe went to the back of my mind.
In February of 2012, Lily was almost 3 and Jewel had just turned 5, the girls were playing around on my bed and Lily fell off. (I know--rock star mom moment.) She jammed her left index finger and it swelled to about four times its normal size. She was still a baby. Even for an adults broken finger doctors don’t do much. She didn’t cry about it after the initial injury. I kept an eye on it. After about two months a nurse friend noticed it was still swollen and suggested I take her to the pediatrician. The doctor looked at it and said it looked like she’d jammed it. He said even if he did an x-ray it wouldn't show much because her bones were still developing and he was sure she was fine. While we were driving home I was thinking about how I should have ask him to look at her toes. Three more toes had become red and swollen. Maybe I knew at this point that something was terribly wrong and I was trying to ignore it. Maybe I was neglectful. When I think about this appointment I get a sick feeling in my stomach and wonder if I’d advocated more if things wouldn’t have gotten as bad as they did. They say hindsight is 20/20. I try to never think about the past, or the future. Both make me feel sick and make it hard to get out of bed each day.
Lily’s finger never got better and she had four red, swollen toes. She started referring to them as her fat finger and toes. And life went on. I was so busy with Jewel’s allergy testing that took weeks, learning how to prepare food for a 5 year old who couldn't have dairy or soy or legumes. Jewel’s scopes were every six months and she was on steroids that cost $6 a day after insurance.
During all of this Lily started refusing to get dressed in the mornings. This doesn’t seem like a huge issue as I think about it now, but our world was small. The next thing on Lily's list of things to learn was to dress herself, but she wouldn’t even let me dress her. By 2 years old Jewel could mostly dress herself. At 3 years old, I was worried Lily was going to be naked all of the time. Regular days where she wore comfortable clothes were extremely difficult. Sundays where she was expected to wear tights and dresses and dress shoes became unbearable.
Again, this seems trivial. My husband was a pastor at a church during this time. Although every person at our church would tell you they did not care what my children wore to church, there is an expectation that the pastor’s children set an example. That they wear their best, that they act their best and that they are the best. Sunday mornings -- and every morning -- I was home alone with the girls. It was my sole responsibility to make sure the girls were always at their best especially when in public. Sunday mornings started turning into a wrestling match with Lily. A wrestling match that could last over an hour and end with both of us crying. I was given advice -- terrible advice. Some of it I tried. Some of it I didn’t. But the pressure I felt as the pastor's wife to be the best was a terrible crushing pressure.
The struggle for Lily to get dressed went on and on. Week days she started wearing what I refer to as her uniform: skin tight undershorts, skin tight jeans, and princess t-shirts that I would seam up to make tighter. She refused to dress herself, but she would allow me to dress her.
One day in June 2012 when Lily was 3, I was dressing her. I remember I was putting a red t-shirt on her and when I went to put her right arm into her shirt, her arm wouldn’t bend. Her arm was stuck. Specifically her elbow was stuck. It was the strangest feeling to put pressure on her arm and for it to not bend. It felt like the all of the air was sucked out of the room. I couldn’t hear anything. I couldn’t breathe. I ask her if she fell. She hadn’t. I ask her if her arm hurt. She said it didn’t. She was wiggling to get away from me. She had no idea something terrible was happening. The red fat toes and the red fat finger flashed into my brain. And I knew. I knew what it was.
While Lily went off to play with Jewel and their friend who was over for the day, I sat on Lily’s hardwood floor and tried not to let my brain spin. I just needed to call the doctor. I didn't need to think about what was going on in my sweet Lily's little baby body. I called and the doctor got us in the same day.
Bryan came home from work and we loaded three young girls into our car. I didn’t tell him what I suspected. I couldn’t. Bryan stayed in the waiting room while I went back with Lily and the doctor. I showed the doctor Lily’s elbow, her finger that hadn’t resolved, and her four fat toes. The doctor said the words that had been swirling around my head: Juvenile Arthritis. She said she was certain that's what it was and that she would get Lily an appointment at the Children's Hospital as soon as she could get her in. She sent Lily for blood work. I remember driving to the lab when I told Bryan what the doctor had said. I have no memory of Lily’s first blood draw. If I had to imagine it, I’d imagine she was sitting on my lap and we were holding hands. She probably didn’t cry and she probably was pleased about the colorful bandaid they gave her.
After her blood draw we took the three girls to McDonalds for happy meals. Bryan took them and I sat in the car. For the first time in five years I had a full blown panic attack. Grief and terror flooded every cell of my body. I started seeing things clearly that I hadn't put together before. I wondered if all of the crying was because she had been in pain. My BABY was in pain. I thought about how instead of crawling she had scooted. She didn't use her arms. Was that because it HURT her?? I thought about all of the mornings I’d wrestled her into her clothes while she fought against me. Was that because she was in pain and didn’t understand it?
I thought about the mornings she would get up and “zombie walk” as we called it. I realized she was walking that way because she was stiff from arthritis. I thought about all of the days I teased her and called her lazy bones. She wasn’t lazy. She was in pain and fatigued. I sat in the car crying, and hyperventilating, while our world crashed down and the world around us moved on as if everything was the same. But nothing would ever be the same again.
To read part II of Lilys story go here.
Written by Heather Fenner