Many of you have started following long after I wrote my 1st post. This is our story. This is why I started blogging. This tells you who I am.
My Family Curse
I can’t tell you how many times I have heard, “Your family is cursed!” Friends and strangers alike are not trying to offend me and there is no offense taken. It is actually being offered as a token of sympathy with a twinge of humor. Yes, our family seems to have been hit with a series of unfortunate events, but I clearly don’t see it as a curse. They have been blessings. They have urged us toward growth and to live better lives. Let me explain:
Kevin and I got married in 1999. We were young, but after five years of dating we were ready to move forward. We struggled like other young couples while I completed my teaching credential and Kevin finished his degree in business. Things were looking up once I was hired as a 5th grade teacher and Kevin was promoted to management with his company. However, during my 1st year of teaching, I wasn’t feeling well. I continued to have odd symptoms that began when I was 16 and they were starting to get worse. I had random fevers, fatigue, and rashes. After a 6 year struggle to find a reason I was feeling so sick, I finally was diagnosed with lupus, an auto-immune disorder. So many people expressed sympathy, but I saw hope in the midst as there were other people diagnosed with diseases much more severe than me that same day and I was thankful for not having anything more threatening.
Fortunately, my lupus was very manageable and I was able to get pregnant that spring. We had our baby, Luke, and life was good.
But then I had a severe lupus flare up that I suffered a few days after having Luke. I ended up in the hospital for a week and have been battling the disease to a much greater degree since. You can read more about Luke's birth story and my lupus experience here.
A year later, we had the next bomb drop. Kevin was laid off from work. We struggled to make ends meet and the stress took a severe toll on us as a couple. Everyday felt full of uncertainty. Weeks turned into months. It was a huge relief when Kevin got a new job with a great company. Not only did it pay better, but it was more secure and had much better growth potential. It wasn’t a curse after all. It was a transition for better opportunities.
Two years later, we found out I was pregnant. Although it was a surprise, we were thrilled. However, shortly after my positive pregnancy test, I started bleeding. An ultrasound confirmed our worst fear, the pregnancy was ending. I was devastated. The hardest part was that I didn't know how to grieve for it. On one hand I knew that miscarriages happen often. It was very early, which made me feel like I wasn't supposed to grieve as much as someone further along in pregnancy. I told those who tried to comfort me that I was fine even though I was broken down by my sadness. Even in the midst of my sadness, though, I still had hope that I'd be able to get pregnant again and that hope was part of my recovery.
Within a few months I found out I was pregnant again. We were over the moon with joy. At the same time, I was incredibly scared at the possibility of another loss. I tried to relax and enjoy the newness of finding out another little one was on the way. It wasn't long when I began bleeding. I tearfully called my doctor who asked me to come in right away. I prayed aloud as I drove and kept repeating,"please not again" over and over until I arrived at the doctor's office. Despite my pleas, I already knew. Once I arrived, the ultrasound showed that the pregnancy was ending. I felt my hope end at that moment too and I wondered if I'd ever carry a full term baby again. I was broken and didn't know how I was going to be put together again.
It took many months for me to reach peace about the miscarriages. Not that I forgot about our babies that we lost, but I was at peace with the fact that I may not carry another baby. For us, we decided to pursue two options. One was to test and see why I was having repeat miscarriages. The other was to start researching adoption options. We knew we desired to have more children and for us, adoption was something we were open to.
After multiple tests during this time, it was determined that the lupus was causing my own antibodies to attack the new life within me as it saw it as a foreign invader. Although it was a risk, I was put on several new medications to manage the lupus and once we were ready, we tried again. I discovered I was pregnant shortly after. I was hopeful and terrified once again. I kept waiting for the worst to happen, but we were blessed with another little boy, named Charlie.
Seventeen months later, we added one more boy, Jack, to our family.
A week after he was born, we received the devastating news that our oldest son had Asperger’s Syndrome. My heart stopped beating. I felt defeated. I questioned, how were we going to do this? Haven’t we had enough? People were beyond expressing sympathy for us at this point. Our friends and family shared in our disbelief. There was almost a sense of outrage. “Haven’t you suffered enough?!” was a repeated sentiment.
I went into fix it mode. Our son started intense therapy and biomedical interventions. Here I had 3 kids under 5, one a newborn, and we were spending on average 10 hours a week in therapy! Luke’s gluten and casein free diet and supplement schedule were extremely taxing and expensive. So were his therapies, as most families still do not get insurance to cover services for autism. Between the lack of sleep with a newborn, a busy toddler,driving Luke to all his therapies, and spending every extra minute researching how I was going to help him, I reached my breaking point.
Then a tragedy occurred in our community. A mother was driving with her three children when a semi-truck rear-ended their minivan. All three children were killed in the accident. It tore me out of self-pity and reminded me that although we had struggles and heartbreak ahead as we helped our oldest navigate a world that his brain wasn’t wired for, we had so much to be thankful for. I began to focus on his talents and strengths and accept him for who he was created to be.
In case, you have not noticed by now, I’m a tough girl. I persevere and try to find the positive in meek situations. All of that crumbled one warm June day when my husband walked in the door after a routine dermatologist appointment and told me that he had melanoma. He cried and the children watched in silence as we held each other in the entryway. I held it together…for the moment.
We ordered pizza since I was in no shape to cook, and I wept in the car for a long time as I drove to get it. I couldn’t muster the strength to go into the pizza shop. Instead I played out all the worst case cancer scenarios in my head as tears streamed down my face. I worried about his suffering. I worried about losing him. I worried about our children having two ill parents. I feared who would know how to raise our son with Asperger’s if something happened to both of us.
The following weeks were filled with many ups and downs. Eventually my husband had two surgeries to remove the tumor in his leg and several lymph nodes. Our fears were confirmed. The cancer had spread to one lymph node, giving him a stage 3 (4 being the worst) diagnosis. Again, people shook their heads in disbelief and compared us to Job in the Old Testament who suffered one tragedy after another.
Although we would not ask for the cancer, it has taught us to be aware of the way we are living.We are 3 years since his diagnosis and he is cancer free. We are making a conscious effort to have more fun, to laugh at ourselves and together more, and to value the little things in life.
We are not cursed. We have been blessed. We have learned much and we are growing. We are loving and we are laughing. We have a God who is GOOD and who has provided a roof over our heads, food on our table, and people holding us up when we feel like we want to crumble. For that, we are grateful.