A mother’s unwavering commitment to her son’s journey with Angelman Syndrome is told in DQ Unyielding Love.

People on every corner assured me that Gus would undoubtedly keep growing till he was 10-12 months. When I told the nurse about my concerns, she took this problem seriously. Our third son who at that tender age could neither hold his own nor sit up by himself. In fact, he was not doing anything other than lifting our whistle-while-we-work atmosphere by his infectious grin and shimmery cyan eyes. He didn’t beat on his chest, but just bit his hands and shouted. Nevertheless, it was his personality that was like total purity and healing power so much that to witness him close enough would have been enough even to heal the deepest scars.

The whole time I was pregnant I had the perfect health and his entrance compared to reality was so quiet that I could not connect it with reality. He loved it from the very beginning and we were in that perfect first 24 hours where we were just happy because we had just discovered something new.

Demonstrably, the next day was a new day. It appeared that he could no longer recognize the food because he had lost his appetite. His latch was so bizarre and it looked like he intellectually knows the purpose, but for some reason, he has the impulse to, well, suck. It was a long feed. When he finally came off me he spat up and he looked like he was hungry again instead. This went on and on.

I told our beloved pediatrician about my worries at Gus’s one-week check-up, and he said that Gus probably had serious acid reflux. In the hopes that it would help him, I stopped eating all dairy and soy right away. But his health didn’t get much better; in fact, it kept getting worse. By the time he was one month old, our once-full-grown baby boy looked weak. His weight wasn’t going up; it was going down. Because of “Failure to Thrive,” we were sent to the emergency room right away.

We stayed at the children’s hospital for a few days, where Gus had many tests and was poked and prodded over and over again. Many of the tests they did were for conditions I had never heard of. Every time I quickly looked up information online, I felt sick and sad. Thank goodness, none of the tests showed anything.

We began giving Gus a special formula while we were in the hospital to help him gain weight quickly. We also met with a lactation expert a third time since he was born. I told them I was worried about how he was latching on. She was kind enough to suggest trying different positions and made sure there were no tongue or lip ties. I was totally stressed out at this point. It seemed like everything I knew about being a mom was thrown out the window. The hospital staff told me that we were there because we were “failure to thrive.” I felt terrible about telling them that. I thought it was my fault that my baby was hungry; it couldn’t have been because of how I held him while I fed him.

We felt lost because we didn’t know what to do or where to go. But while we were in the hospital, our third-shift nurse made me feel better. In his middle years, he was a tall, nice man who was very good at his job. I looked forward to his check-ins because they usually led to deep talks. He was kneeling next to me as I rocked Gus to sleep, and my mind was full of fear and confusion. He looked me in the eye and said, “I know I’m not supposed to say anything, but I want to let you know that our daughter is severely autistic.” It’s not the life we had planned, but she makes us so happy and is the light of our lives. It does get better.

His words hit home for me very deeply. I felt a spark of hope and comfort at that very moment. This person had dealt with problems that came up out of the blue and found beauty and happiness in the middle of them. It made me remember that even though things don’t always go as planned, there can still be times of great love and happiness.

I remember being confused and looking at him. After that, he said, “I think your son has autism.” He was wrong about that diagnosis. But he wasn’t really wrong. Even now, the way he understood and cared for me while he was crying with me makes me cry.

We were sent home from the hospital with an e-mail of hypoallergenic format and still no clear answers. We were told that he might have “serine acid reflux” and told to start taking medicine for it. Months went by, and finally I stopped breastfeeding completely and only bottle-fed G’s the ridiculously expensive hypoallergenic formula he was on in the hospital. It was still hard for him to spit up after every feeding, and we were celebrating onces gained instead of pounds gained each month. Even with everything going on, I couldn’t help but notice how he almost chewed the udder to get milk out of hers. We were lucky, though, because even when he was having trouble eating, we never had to say that he needed a g-tube. And that he was always so happy, even though he had a hard time feeding.

Anyway, months went by, and my little brother was not only slowly gaining weight, but he also wasn’t reaching any of the milestones I remember seeing him reach with his two bigger brothers. My sweet husband would reassure me that he was probably just behind schedule because of his rough start to the season. But my gut told me it was something much bigger, and it was hard to ignore. I began to really notice his movements, which seemed very stiff, when he was about 6 months old. He started to lose his left eye several times during the day, and he could barely move while being held. He could only roll back and forth and up and down.

Around 7 to 8 months, I began to notice that his movements were jerky. They were mild, and I had worked as a psychologist in traumatic brain injury for seven years, so I was used to seeing things like this. I would tell myself, “I’ve seen this before.” I became very obsessed with Googling signs after that. Every night while the house was asleep, I would quickly type in “jerky movements in 8-month-old,” “inability to sit,” “self-pity,” and “no cradling.” I was really sure at one point that he had cerebral palsy. I had enough of searching for his symptoms on my own by the end of his ninth month, so I called his pediatrician to make an appointment outside of his regular well-checks.

When we got inside, I firmly listed ALL of my worries and left out the word “intention.” As I said before, my motherly instinct tells me that something is wrong and that something strange is happening. I know from experience how important it is to get involved early, and I needed answers right away. Our doctor played with him nicely, as he always had. He jumped up and down with him and smiled at that infection’s look. Before saying, “You’re right, I think something neurological is wrong with your son, and we should take him to a neurological right away,” G’s was so good at delivering.

RIGHT AWAY RELIEF. I felt better right away. Not because I wanted it, but because I had felt it and been by myself with it for a long time, and finally someone put those feelings into words. Things started moving very quickly after G’s’s appointment with the neurologist. Before we even knew what was going on, he was given a list of OT, PT, and speech therapy services, which we started right away. Everyone could see that he was acting jerky, and he had no way of communicating with other people (he wasn’t barking, cooing, or pointing). After his first appointment with a neurologist, a genetics test and an MRI were also ordered. On his first day, a genetics counselor called to let him know what tests were planned for him. Before she talked about Angelman Syndrome, she talked about Prader Willis Syndrome, Down syndrome (my amazing brother has Down syndrome, so I knew right away that this wasn’t the case for G), and a few other things I had heard of. I was interested. I had never heard of this before, even though I know a lot about the special needs community.

I felt like I could cross off every item on the list as I went down it. It was proven on October 26 after an MRI and full genetics screen earlier that month. Some beautiful, perfect Gs had Angelman Syndrome, a small deletion on the 15th chromosome that affects about 1 in 15,000 people. Sitting there in my feelings, I was both happy and sad at the same time. After a while, it was over. To be honest, I think it’s because I’d known for a long time that there was something special about our relationship. I had grieved the loss of the life I thought my son was going to have a long time ago, and I was able to quickly switch to just celebrating it. Taking pride in his differences. Being proud of the unique things that make him unique and thanking God for giving him his unique genes.

In no way will I lie and say that getting this diagnosis has been easy. I am well aware of the difficulties that come with it. Since G’s was diagnosed (20 months ago), he has made huge progress in his gross motor skills, but he has also been through the pain of seizures, which is another very common sign of the syndrome. He finally stopped flipping and spitting up and can eat solid foods without much trouble, though he still chews his food. when he puts his sippy cup down. His brothers and I can easily keep up with him because he crawls like a turtle. He can’t walk or stand on his own yet.

He’s strong, and I’m sure he’ll be able to walk soon. Even though he was told he couldn’t talk at all, he does talk a lot now and even calls her “mama” sometimes. Ghosh keeps talking in a way that should be more common to all of us, with his whole body and a lot of depth and meaning in everything he “says.” I love hugging him so much. When I say “hugging,” I mean putting his little arms around your neck, pressing his head against yours, and squeezing you so hard that you’re sure your heart will stop at any second. Just being around him heals. He is happy. We’re so, so lucky.

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