Something I wrote about you

I entered a writing contest a while ago. The theme was, "I never thought I'd..." I did not win the contest or come anywhere near winning but I was proud of myself for writing and entering the contest. Thought I would share as I never thought I would be a good enough mom for Daniel:


When my daughter was born she was born ready to go. She was not going to let a cord snug around her neck slow her down. She wanted to move whenever she was awake. She was also so smart, that she knew if you were tricking her by pushing her in the stroller instead of walking her around at night. She either wanted to be outside or picked up and held in my exhausted arms.

My husband and I were delighted to watch her grow and she soaked up all of the information we gave her. I was lucky enough to be a stay-at-home mom for the first six months of her life. When I needed to go back to work, we found an awesome Spanish immersion preschool for her to attend and just like that she was becoming bilingual!

I went to work as a pediatric dietitian in a large teaching hospital where they treat very high risk patients. I was working with many children who had major health problems and delays. Dealing with this everyday made it difficult to see my daughter and think about what could happen to her. Something so simple could go so wrong. I hated to think about that and I struggled to see the parents of these children. I was so saddened to think about what they must be going through.

These parents were amazing and seemed to have strength wrapped up with courage. I looked at these parents in awe never once believing that I could do what they were doing. I thought that if I ever had a child with disabilities that I would be unable to be so strong. I was thankful that I had a very happy and healthy daughter. Whenever I looked at the parents of these children I would think about how lucky I was. I also realized how it can all go wrong in one second. Something that happens even before you realize you are pregnant. It could even be something that happens in childbirth. I would think about these parents and wonder how they could find the strength to go on and continue to love with a full heart.

These children were the most special in my heart too. They gave off such light and love that I knew their parents managed because of that alone. It was still difficult for me. I know I am a strong person having overcome many obstacles in my life, but I felt that I would not have that kind of strength.

I was glad when I started working with the adult population. At that particular time in my life, I was taking my work home with me. I would over analyze my daughter’s every sniffle, thinking she had some terrible disease. When working with adults I didn’t always have a picture of my daughter’s eyes in the eyes of the patient. I still kept those children in my thoughts constantly.

I had my own daughter to focus on though, and soon enough I was pregnant with my second child. I found the true meaning of the saying that “ignorance is bliss”, because I felt that I knew too much about what could go wrong. I figuratively held my breath throughout that pregnancy, but luckily my son was born after 39 weeks. He was perfect. He was nine pounds and the completion of our family. We had our beautiful daughter and our handsome son. I saw before my eyes, two children who would grow up and have fights along the way but as brother and sister they would always love each other. I saw a picture of my little boy chasing after his big sister, and of him one day standing up for his big sister if need be. It was all I ever wanted.

The first few months are always hard with a newborn. With my daughter, as I said, she was born ready to go. With my son it seemed he was pretty miserable for his first three months of his life. He had terrible reflux, so bad that he would wretch his head back so violently. He was so little, but in so much pain and he was so strong. We had him on medication and changed his formula but really most of the time was spent trying to keep him comfortable.

It seemed after three months though, he perked up. He was a brand new child who was smiling and laughing and feeding and sleeping well. We thought the worst was behind us and we began to enjoy this amazing little boy that we had been blessed with.
I should say that after having a second child you are constantly comparing milestones between your first and second. Our daughter was right on target with all her milestones and I started to look at our son to be right along with her. Logically I knew he would be different and that it was not fair to him to compare, but I fully expected that there would be little difference in the two siblings.

I don’t really know what struck me first. I think it was the fact that he would not grab for a toy, or maybe it was the obvious lack of control when it came to rolling over or trying to sit up at 6 months. He also had very little interest in toys. My mother took care of him during the day and she also noticed the lack of interest in toys and the inability to sit up or roll over or even reach out with his arm. At his six month well check appointment we talked with the pediatrician and she agreed and immediately referred him to Early Intervention. She also recommended that we talk with a Physiatrist or physical medicine and rehab physician. We were referred to one at the
hospital where I worked. The physiatrist was quick to order an MRI to see what, if anything was going on in the brain.

My son started seeing a physical therapist but around this point, my husband got a job offer in another state. Everything felt rushed, we had the MRI done and were quickly told of the results but not what they meant. We were referred to a neurologist in the area where we were moving and that was pretty much it. We moved, got set up with early intervention and went to the neurologist with the MRI in hand. A few weeks later, I was on the phone with the neurologist and he explained what our son had. He told me that even before I knew I was pregnant that my sons’ brain did not develop the way it should have. He has a smaller than normal corpus collosum and some other fancy worded things going on in the brain. Ultimately he has a diagnosis of cerebellar vermis hypoplasia.

Upon hearing that my son was not normal I was immediately picked up and transported to a new land. In this land I did not speak the language and everything and everyone moved in slow motion. I was alone in this land and was trying desperately to get back to a place that was familiar. It was as though I were in a pool of mud-trying to keep my head up and trying not to drown. What happened? How? Why? What were we going to do? There were so many unanswered questions. Would my boy ever crawl, walk, talk. What would he be able to do? The doctors couldn’t tell us. His therapists and teachers could not say. His future was a mystery, his prognosis, a guess.

We tried to make sense of it all. We started a blog and wrote our feelings. We leaned on family and friends to help us navigate this new land. We also looked to our son to help us. He was no different from the boy we loved before the diagnosis. In fact, he was the same little boy all along. We grieved but we saw in our son the wonderful boy that he is and we saw all the wonderful things he could do and was learning to do--just a little slower.

Our son and our daughter both have endless possibilities for their future. In fact, though our daughter has no diagnosis we still are unsure about her future as well. We just take it one day at a time. Our son is four years old and even though he doesn’t crawl or walk yet and he says only a few words, he is the light of our life. We love him and it is easy to take care of him.

As for me, I didn’t think I was strong enough. Like the moms I saw in the hospital, I never thought I could be that strong. Now I realize that it is not strength I needed to gain, but it is the love I had all along that will get us through this.