Topics Of Discussion
Coping with Developmental Delays

wisdom from the Preemie-l e-mail group           http://home.vicnet.net.au/~garyh/preemie.htm

Alfredo give the male perspective, "... just a few words about this Dad and the NICU trauma/emotions and "stuff". I always been a light sleeper, but since the twins ordeal at the NICU I do have to go to their room every other night to convince myself that they are OK. The other day at the store there was this "chime" that it did sound like a NICU alarm, it did startle me and brought back a lot of memories (anxiety, fear, anger, etc.). I see my twin boy (William) struggling to overcome a CP and walk, and I feel anger and sadness, yet, I am somehow confident that he will be OK. I am myself a preemie twin (28 weeker back in 60) and know first hand about the delays and the always trying to "catch up". I know that my mother did suffer through our early years as I was hyperactive, and my sister did not walk until 3 years old, was terribly shy, and did not talk until 4 years old.
I, like many of you, try not to compare my twins with other kids of their same age, but is hard not to. I am very grateful that my twins are healthy and alive. I lost four other children before, my oldest, James, would have been 22 this next August. I lost him to cancer, when he was just four years old, as I was finishing medical school. His early death left me feeling that medicine had betrayed me, left me full of anger and sadness. I could not feel anything for anybody for a long long time. When I hear or see a child dying or death (even in a movie) I can not help but weep. Two years ago we lost 3 babies in utero, and there is not a  day that goes by without me thinking how those three Angels would have look like,etc. For me, my children and my wife are the most important things in my life, and I have gladly forsaken "fame & and fortune" for more time with them.
I grew up and a very intellectual, cerebral, devoid of emotions family. My idol when growing up was Mr. Spock. I thought logic and science were everything. Today I like the science and medicine, I make a living out of it. I enjoy certain things that society labels as "masculine", but I am also proud of some of my hard earned and acquired "feminine" attributes, such as empathy and sympathy, attributes that I think make any person a better spouse, a better parent, and better human being. I think both men and women feel things the same way, or almost the same way, perhaps what makes some difference is the way we educate/train/teach our boys and girls to respond to emotional experiences."

Helen offers, "Interesting topic! I certainly experienced chronic sorrow through out Edward's infancy and early childhood which even colored my experiences with our full term daughter born when Edward was five years old. I remember bringing her home from the hospital and checking her head and stomach (the pattern I'd established with Edward) to see if her "shunt incisions" were infected, only to realize suddenly that there *was* no shunt. This happened off and on for about a month until it finally registered in my subconscious mind that she really was OK.
Many parents have told me was that they experienced relief when a definite diagnosis was made (CP, MR, etc.) because they found this easier to deal with than uncertainty. I also felt this when Ed was "diagnosed". As Edward became older, and we adjusted to the realities of his/our life, the "chronic sorrow"receded a bit, but I still feel it when a similarly-aged friend or relative graduates from college, gets married, etc. Our daughter just graduated from high school this weekend, and I felt a great pang of sadness that this was the only graduation we were ever going to experience with our children. On the other hand my husband and I often say that one consolation (of sorts) is that Edward will never leave us with an "empty nest" (at least not in the foreseeable future). The other time I feel "chronic sorrow," although it feels more like "acute anxiety and cosmic paranoia," is when Ed has shunt problems. I feel just as crazy at such times as I did in the NICU and during the first horrible year at home.
I also find it interesting that fathers seem to be less affected than mothers. This has certainly been our experience. My husband has almost always been a more relaxed, optimistic parent to Edward than I have been.
On the other hand, he has also been known to downplay or ignore important problems. I don't know if this is a male/female thing or just the differences in our individual temperaments (which have come out in many other contexts --planning for camping trips, purchasing real estate, etc.)
The "becoming an expert" part is also fascinating. I suppose I tried to do this by writing the book. However, I found myself avoiding the topics that directly related to Edward. I had to force myself to learn anything at all about hydrocephalus, whereas the problems he had avoided (like BPD) were easy to write about. I got a copy of his chart early on, but was terrified to read it. I avoided talking about issues directly related to his care (e.g., did he have anesthesia with his shunt surgery, etc.?) even though I was friendly with the nurses and doctors who cared for him and could have found out. Later, I was able to ask these questions, but it wasn't easy at first.
Chronic sorrow does (usually) lessen with time, at least that is my experience with it, however it is always right below the surface, and it doesn't take much to have it all come flooding back. But I am grateful to have it below the surface most of the time now. Life has become easier for all of us as a result.
Page 4                    arrowback to index                     arrowgo to next page