Cost of Survival

I just read an article about a mother in Australia who had a premature baby at 23 weeks. He is now three years old. According to his mother, "he can’t walk or talk...he has chronic lung disease, cerebral palsy and global developmental delay. He has diabetes insipidus and his thermostat is a bit wonky, so he gets hot and cold.” She feels so much regret that she let her child live.

I always heard that amazing advancements have been made in medicine allowing the tiniest preemie to survive. But the cost of their survival is extremely high. The quality of life that results from not being in the womb for at least 32 weeks is awful. There are lucky micropreemies that survive with no issues. Doctors do everything they can in hopes that another child can be that lucky one.

I was not given a choice in Miles' survival. He had strong lungs and fought everyday but had many issues due to prematurity. People would tell me miraculous stories about little preemies who survived with the most normal lives. That unfortunately is not the norm. People keep the sad stories to themselves.

I was very concerned about the quality of life Miles would have. We fought beside him and had hope for his future. We wanted him to be the miracle story.

I feel bad for mothers who regret the survival of their children. I  feel bad for those who have to experience the loss of their children as well. Either way, it is an awful experience.

This is the article from The Telegraph in Australia.  http://www.dailytelegraph.com.au/lifestyle/sunday-magazine/i-feel-guilty-that-i-let-him-live/story-e6frf039-1226040243204

Matt's Play

Matt hosted his first play reading last night. He wrote a play called, "Chiku the African Adventurer, live!". It is about a Dora style character. He planned the reading, hired a director and actors, set up the date, and location. Miya and I went to support the talented man in our life. She loved seeing her father on stage with the other actors.

I am so proud of him for putting on this play reading. It is so easy for writers to create work and leave it on their computers. I see Matt really making efforts to make sure his work is seen and heard. He is submitting his play to festivals and we hope for a great outcome.

I admire his efforts in continuing to create while working, finishing his thesis and being a husband and father. Miya was very proud of him too.

Dinner with my friends

Last night I went out for dinner on the Upper East Side. I hesitated to go to this dinner. Actually, I thought of canceling a few hours beforehand. You see, these three women all had micropreemies in the NICU. Their children survived and my boy did not. I was very nervous about how I would feel during dinner.

I decided to go. Deep inside, I knew I would have a great time. I was right. We met at a hip and yummy Middle Eastern Restaurant. We definitely spoke about the NICU experience. We even joked about some of the doctors. But we also shared painful moments. The pain of seeing your tiny baby in an incubator cannot truly be understood unless it is experienced.

These three women went home with the prize. I did not. But I still feel a deep connection to them. I truly am glad I did not stay home.

My jaded baby!

So, sweet little Mimi is on Winter break. I normally love foreign art house movies which are usually ridiculously sad. But, I have totally loved watching Disney-style movies with Miya.

Tonight, we watched Fish Tales with the ever cute Billy Zane. He plays an Oxford professor who is widowed with a teenage daughter. While doing research on an island in Greece, they encounter a beautiful siren. He falls in love with this mermaid. Yadi yadi yada, she loses her tail, becomes a human, and she and Billy Zane become the best looking couple ever.

In the final scene the couple looks into each other's eyes as the credits roll. My sweet Miya mutters, "But they are soon going to be mad at each other...everyone fights!"

Oh golly! My jaded baby! What have we done?!

Supercool Parents

I learned today that the award winning actor, Chris Cooper, had a premature baby years ago. Due to his prematurity, Jesse had cerebral palsy, was a quadrapelegic, and could not speak. He lived till he was 17 years old. Jesse experienced ridicule and was told he did not belong in many situations. His mother, Marianne Leone fought the New York Public School system to give him his educational rights. Despite his handicaps, Jesse enjoyed life. He loved surfing, was on the honor roll, and wrote poetry.

According to Marianne Leone, “People refer to him as a burden, but we never saw him that way. He was a joy to us, and a teacher. The feeling of loss never goes away.” She wrote a painful memoir, "Knowing Jesse".

I cannot help but think of Miles, he was expected to develop severe handicaps due to his prematurity. We planned on loving Miles and cherishing him unconditionally. During his one month of life, we loved him wholeheartedly.  I adore these parents for showing Jesse unconditional love.

Competitive Mom

Today, Matt and I took Miya for gifted and talented testing. We went to a local elementary school for the test at 9:00 am. I could tell that the parents were uptight about the test. They were asking the assistant principal many questions about the exam. I was thinking, "take a chill pill, these kids are only four years old."

My ugly competitive head emerged when Miya came out first from the exam. She finished first...what does that mean? The examiner is not allowed to tell us how the exam went or how she did. We find out the results in May. On the way home, I started asking Miya questions such as, "Was it difficult? What did she ask you? Was it hard for you? Why did you finish early?" Miya, my little comedian, responded with wacky answers that gave me no information.

After thinking about it, I was ashamed of my competitive behavior. I am grateful for my daughter, no matter how she does in the exam, she is a gem to me. Taking my son, Miles, to a gifted and talented exam may not have been a possibility if he survived. Due to his prematurity, there was a large possibility that he could have developed cerebral palsy. We love our children, no matter what label is put on them. We just want them to be safe and happy.

Don't be fooled by happy facebook pictures

I took this picture before I went on the "It's a small world ride" at  Disneyland. My first time on that on that ride, I was 6 years old. A few days ago, I went on that ride again with my husband, Miya, and sweet in laws.

I got on that ride and I missed my son. We have a great family and do cool things together. He missed out on that life. We also missed out on giving him the life we are giving Miya.

So, don't be fooled by my facebook pics! I was crying my eyes out a few moments later. But I only post the good pictures.