May 3, 2020
“For I, the Lord your God, will hold your right hand, saying to you, ‘Fear not, I will help you.’” Isaiah 41:13
Losing a baby to a miscarriage hurts a lot, both physically and psychologically. I was confused, I was hurt, and I couldn’t explain all of the other feelings I was feeling. I couldn’t stop asking God why? As much pain as we were in, just a few weeks later, God began revealing the answer to “why”.
On one of the hot days in May 2016, we all went outside to the backyard and Sophia insisted on drinking water from a regular bottle of water, not her normal cup with a straw. I was helping her, but anyone who knew Sophia knows how determined she was to be independent, even at less than 2 years old. While she was drinking from the water bottle, she spilled it all over her and wet her clothes. I took her clothes off so I can get her a dry set of clothes and she was hanging out in just her diaper. John noticed right away that there was a slight inward curve in her back. He brought it to my attention and I said I never noticed it before. I questioned myself as to why I had never seen it before. I’m with Sophia 24/7 because I moved into her room from the day she was born, I bathe her every day, but I had never seen this curve in her spine before. So how come I never saw it before? It turned out that because the curve was so slight, you can only see it when she is standing and not wearing a shirt. And that never happened because she is sitting down most of the time including for her bath. If she was walking, she always had at least a shirt on her. So, I scheduled an appointment with her pediatrician as soon as possible.
We visited her doctor and she checked on Sophia. The doctor noticed that Sophia had not gained that much weight since January. Then, she decided to do an X-ray on Sophia’s spine and legs. The X-ray results came back and we were told that the spine looks perfectly straight. The doctor then advised us that Sophia’s left leg was a couple of millimeters longer than the right leg and suggested that this was what was causing the curve. Sophia was referred to pediatric orthopedic surgeon so we can get more details about this issue.
Moving forward to June 2016, we visited the orthopedic department. After going through another X-ray on Sophia’s legs, we met with the orthopedic surgeon to discuss the curve in Sophia’s back and I brought up my concern to him about the way Sophia is walking. He explained that there is a very tiny difference in the length of the legs, but that difference was not likely to cause the curve in the back nor affect the way that Sophia was walking. He also said that most of us have tiny differences between the lengths of our legs that we don’t notice. He decided to refer her to physical therapy to strengthen her muscles because he noticed some weakness and also to refer her to a genetic doctor to make sure that everything is ok with Sophia.
I have to admit, I went to the genetic doctor’s appointment with zero concerns. It was one of those appointments that I went to, just for the sake of it, and I never thought that there might be something wrong with Sophia. The appointment was scheduled one week before my brother’s wedding and one week before Sophia’s second birthday.
On July 21, 2016, we went to the appointment with the genetic doctor. We started the visit with a case manager that had so many questions for me. The Doctor came in and examined Sophia walking and getting herself up from the floor. Then she looked at me and said, “your daughter has Muscular Dystrophy.” Honestly, I had never heard of Muscular Dystrophy before so I asked her what it was. She said, “weakness of the muscles.” I replied, “ok, so she needs medicine?” Keep in mind, I still didn’t see it as a bad thing or have any clue what we were dealing with. The doctor said, “there is no medicine.” I said, “so she will need physical therapy?” She said, “do you know what Muscular Dystrophy is?” I said, “no, I never heard of it, that’s why I asked you what it is.” She explained that there are many types of Muscular Dystrophy and that we need to do blood work to confirm that Sophia does in fact have Muscular Dystrophy. If it is confirmed from the bloodwork that Sophia has Muscular Dystrophy, then we need to do genetic blood work to know which type of Muscular Dystrophy Sophia has. I asked the doctor, “so, it’s not confirmed yet that Sophia has Muscular Dystrophy?” She replied, “I am sure she has Muscular Dystrophy, but I can’t tell you which type.” I was pissed at the doctor! According to her, only blood work can confirm the disease, yet she is so confident that Sophia has it. While leaving the doctor’s office, the case manager came to me and said, “please don’t search the internet about Muscular Dystrophy, it’s very scary.” I said, “that’s the wrong thing to tell a mother.”
John was in an all-day meeting in Riverside, but I called him and told him anyway. Until this day, he remembers getting the phone call while in the meeting and just going numb. He stopped hearing me as soon as I said Sophia has “M…” and came home believing that I told him Sophia has “MS” (Multiple Sclerosis). When I got home, I told everyone about this doctor’s “crazy guess” and insisted that I wanted to deal with another genetic doctor and never deal with this same doctor again. We scheduled the blood work for next week, after my brother’s wedding and Sophia’s birthday. But inside me, I couldn’t stop thinking about it and asking myself “what if she is right? What if Sophia has Muscular Dystrophy?”
Lessons Learned:
- God is always by our side
- God will never do anything to harm us
PLEASE NOTE – for all of the “lessons learned”, we did not always see it that way during the events that were occurring which are mentioned in the posts. Many of these lessons were learned weeks, months, or even years later when we looked back and reflected on the circumstances.
