“Would you like to know the results of your children’s tests?” I heard the doctor say to me over the phone as I got home from a tiring day at work. I quickly got Taya’s attention and told her that our doctor had the results of our children’s tests to determine if they have the gene mutation that I have. The doctor wanted to give us the results right then, which would confirm a vEDS diagnosis a week earlier than we were expecting. Together, we braced ourselves for the news that was to follow. We knew that the likelihood for each child to receive a diagnosis was 50%. With six children, we were expecting to hear that three of our children have vEDS. One of our biggest fears was that the doctor would say that all six children tested positive.
The doctor went through the results individually for each child. After each child’s results were given, we experienced a huge mix of emotions. We were relieved to know that the probabilities held, confirming only three positive diagnoses. At the same time, we felt such immense sorrow for our three children who do have it because we knew that it would change their lives from that point on.
In the days and weeks that followed this life-altering phone conversation, I let myself feel more emotions than I had in quite some time. Taya had already been processing her emotions about the possibility of each of our children having vEDS from the moment I was in the hospital. As a mother, she was very concerned about how the diagnosis would shape the rest of their lives. Would they marry, have kids of their own, etc.? Would other kids treat them unfairly because of their diagnosis? Because I was experiencing the pains first-hand, I felt like I was barely holding things together each day. I couldn’t think about how the potential diagnoses would affect my children until I had time to process what it meant for me. After coming home from the hospital for the first time in almost two weeks, I spent months trying to make sense of everything my body was telling me while also trying to make it through each day at work.
After I had finally started to feel like I was beginning to understand how to deal with my own daily physical, mental and emotional pain, I was hit with even more devastating news. To think that I had passed this unusual, life-threatening genetic trait on to three of my children was almost more than I could bear! How could this be? It seemed like an absolute nightmare.
I had never been mad at my Heavenly Father before, but I found myself completely blaming God. I have a 30-minute commute to work. I used this entire time many days in a row to pray, but not like I had ever prayed before. I pleaded. I cried. I yelled. I even screamed at my Heavenly Father. I was mad that He would allow this horrendous situation to fall upon my family. Those in my family who have the diagnosis have to go through the physical pain first-hand, while those who don’t have it are forced to watch the effects of this syndrome play out on their loved ones. What made things worse for me is the understanding that I did not develop this genetic mutation over time. I was born with it, but only found out last year. I found out that I had vEDS after having six children brought into our family. I had no idea at the time of each of our children’s births that I was passing this on to half of my children. I do not regret having any of our children despite the situation they came into. The reason I was so mad at my Heavenly Father is that He allowed vEDS to even exist in the first place and that He allowed half of my family to have it.
I felt like my Heavenly Father had abandoned me. He was abandoning my family. I felt like everything I thought my life was to that point was all turned upside down in a huge lie. I had a hard time understanding how my Heavenly Father could love me and allow this huge devastation to happen to my family and me. I began to doubt His love. I struggled for weeks with this – but I did not entirely give up hope. I kept asking, praying for answers. I kept praying for peace and comfort that could not come from any other source. I wanted peace to come from the comforting words of others who were aware of my situation, but the peace never truly came that way. In the end, I always felt like nobody understood exactly the painful situation my family and I were in.
Then one night, while working late at the kitchen table, I was listening to uplifting music (I have found this to help strengthen my faith’s foundation). I got lost in my thoughts while going through the motions of my work and suddenly an impression hit so strongly that I began to cry. I was wondering again how my Heavenly Father could allow three of my children to have vEDS, when suddenly the thought occurred to me that they are not just my children, or Taya’s children, but they are His as well. Then I realized that all the pain and anguish that I was experiencing because of this trial that was suddenly forced upon us was not lost on Him, but that He felt it too. Right then, I felt like I was not alone, but that I was wrapped in His loving arms and that my children were and are in His watchful care as well. I understood that it pains Him to see my children experience this trial. Then I began to grasp the magnitude of my Father’s sorrow as I thought about all the people in this world who have various ailments.
One amazing lesson that I learned that night is that my Heavenly Father loves me so much. Despite my limited understanding of the big picture that He sees, He loves me. He loves me enough to allow me to vent my frustrations, even through a temper tantrum at Him. He waits. He lets me struggle with, wrestle with, even blame Him. Then when I am done, He comforts me. He wipes my tears. He teaches me profound lessons that I could not learn any other way.
Although I am not to the point where I can say I am grateful to have vEDS, I can say that I am grateful for my loving Heavenly Father, who loves me enough to give me amazing gems of knowledge in such unique ways that I cannot deny His presence in my life. Even when I feel abandoned, I know that He is there waiting for the perfect moment to bless me in the most perfect way possible.
Our family’s situation is extremely unique, but I know that we are not the only family to go through devastating circumstances. You may be going through a situation right now in your life that leads you to believe you are abandoned. You may feel angry and bitter toward God. That is totally your right to feel that way. It is normal to feel this way while trying to make sense of all the pain. Through this experience, I can tell you that you are not alone. When nobody you talk with can say just the right words to take the pain away, your Heavenly Father can. It is hard to find enough peace and comfort to be able to move forward, but don’t lose hope. Know that your Father is watching you and is waiting for just the right moment to bless you. He loves you. This I now know for sure.