Sunday, June 23, 2013

Learning all over.

I think I'll start with when all the crazy doctor's appointments started. When my son turned a year old we had to switch him to milk as you do with all one year olds. The doctor I had been taking him to at the time suggested I withdraw the whole milk completely from his diet, because the first few times I had given him whole milk he had to be taken to the emergency room. He had had a very bloody diaper and I panicked. The nurse said it was normal for that to happen since his body was getting use to the heaviness of the whole milk. She referred me to a doctor. I didn't like this doctor at all. She weighed him only in his first visit and every visit after that she tried giving him antibiotics for illnesses he did not have. My son had large tonsils making him sound like he had a cold all the time, which is what she was misdiagnosing. A friend then recommended the pediatrics she takes her son to. I took him in as soon as I could. They said he was very underweight; by this time he was already a year and a half. He was also behind mentally compared to most kids his age. He still wasn't walking at 18 months which was a little bit of a concern to the doctors. My theory was that he was lazy because we all held him all day at home. So they referred me to Child Find, an organization that helps children under 3 who are struggling with different areas of development. In my son's case they suggested a physical and speech therapist would help him get back on track. This whole time I felt like a horrible mother. I had been so stuck on working that I wasn't teaching my son anything and now he was behind. I did all I could to help him "catch up." I started reading to him, I only let him watch shows I thought were educational, I repeated animal sounds and body parts so much I dreamed about it. I had no life, I felt, because I was only 21 and did nothing, but work on my child's development. We had our first session with the physical therapist in June of 2012. She would stand him up and help him take some steps and let go. He wasn't having it at all. He was 20 months and displayed no sign of trying to walk. The therapist decided to see him every two weeks. To our surprise, though, he started walking before his third session! We all laughed at her expression when we answered the door and he ran to see who it was. She stayed maybe 15 minutes to fill out paperwork that she felt he no longer needed her services and congratulated us on whatever it was we were doing. Now, his speech therapist didn't see such quick improvement from him. In fact, he still receives speech therapy to this day. During all of these crazy therapies that were happening every other week, he was getting weekly weight checks, because of how small he was. I had to keep journals on his diet and was sent packets on high calorie meals he should be eating. He had blood work done, I think, once a month for the three months before he was sent to an endocrinologist. None of the doctors could figure out why he wouldn't gain weight. I'm surprised they didn't call social services on me, the nurses gave me the weirdest looks as if I didn't feed my child or something. I went to this specialist who looked at my son and asked if I had ever had him tested for Down Syndrome or any other genetic disability. Of course I hadn't! My son couldn't have Down Syndrome. He had a slightly bigger forehead, but so did his father. He stuck his tongue out on occassion, but that was a habit he got from when he was teething. He was small because I was small. I had all my theories and explanations about everything anyone ever pointed out. His first visit was short, a simple introduction to what was going to happen with in the next year. This was in November of 2012. My son had just turned two, was walking, talked a tiny bit and loved cars and guns like any other little boy. I had just started a new job that had a 9-5 schedule so I could spend more time with him, while making a little more money. Things were looking good. Come February of this year, he had his second visit with the endocrinologist. He commented on how mature my son looked and that the Down Syndrome he had seen before was not quite as noticeable, but he still wasn't growing. He said he wanted a genetics test done to rule anything else out, before starting hormones. The thought of giving my son hormones scared me, but I figured it could be worse and this would help him out a lot. I also felt it would be a huge weight lifted off of my shoulders. The past year had been so crazy and stressful. I knew being a first time mom and being so young was hard enough, but I couldn't have messed up that bad during his first couple years of life. A couple weeks after that relieving appointment in February, I get a phone call at my job. The doctor had the results to my son's genetic test and needed to give them to me immediately. My heart dropped because I know when things are good they just leave a message and leave you alone. He said my son had Down Syndrome just as he had suspected. The odd part was that it wasn't in all of his genetic makeup, it was only parts of him that he could see. He explained that he has never seen anyone with it, but only heard of it. The name of it is Mosaic Down Syndrome. I pretty much couldn't hear the rest of whatever he was saying. I was so sad and hurt and I felt disappointed in myself for being so ignorant and in denial. I could have caught this sooner, although I did hear him say at the end that I was lucky to have caught it this early. I cried and I was at work and I felt so pathetic. I called my mom to tell her what happened and I could hear her crying on the other end. She asked if I was ok and I said yes. I also sent a text to my baby's father and my best friend, they were just as shocked, but said they always suspected something.  I was working in the back room so I had a moment to get myself together. Soon my mom came to my job and just looked at me her eyes red and swollen, full of tears. She just hugged me very tight. The type of hug that you know are more for them than for you. She felt the pain as a grandmother and as a mother. She just stared at me with her round, sad eyes. She told me to let her know when I was home; she wanted to see the baby. Right after she had left, my boss came and looked at me and asked what happened. I told him nothing that it was just my son's doctor and I was ok. He kept asking if I was sure like trying to get it all out of me. I said yes I'm fine, my son has Down Syndrome, but it's ok. He just looked at me and said, "it's ok to cry Karla."
"No, no I'm fine. I don't need to cry."
"I know you're strong, but you can let it out. I know it's hard."
"I know it's ok to let it out, but I don't have anything to let out. My son has Down Syndrome it's going to be ok. Hes still my son." But by this I'm already tearing up with a big, ole frog in my throat ready to just burst out in tears. Which I do. Only for about 10 seconds, because I'm not use to crying in front of people so when it happens it's very sudden and very quick; I don't know why. I always thought I would know a little bit about being a mom, since I helped my mom with my sister when I was 16 years old. I tried telling myself it wouldn't be much different when I found out I was pregnant. Little did I know I would be facing a different type of motherhood. A more special type of motherhood.


  1. You are an amazing daughter, friend, sister, person, wife, and now mother. God blessed you in a way not many are blessed.

  2. karla you a great mother no body born knowing how to be a mom not with our 1st baby, not with our 2nd or with any of our babies, each kid is different and we learn by been with them each day. You did all what a good mom does, he is very lucky to have you as his mom. I'm really sorry for what you are going though, but you are a strong young woman and I know you will do just fine. He is a beautiful boy and special in many ways, not all the mothers get special babies like him, God picked you to be his mother for a reason. God will be by you all the way, every day, you will never be alone. Te quiero mucho y para lo que necesites aqui estoy. Eva

  3. This was beautiful. Don't beat yourself up about 'missing a diagnosis', when no one else picked it up, either. (We did the same with Dexter) You seem to be doing a great job, and there are beautiful people, online, who will support you on your way. You'll find lots of them through Love that Max. xx