I was eating breakfast this when I glance up at the tv and saw a segment on Good Morning America on “designer babies.” When I think of designer babies I think of picking an eye and hair color, but evidently this is not what it meant. It means checking your embryo for genetic defects and then deciding if you should keep that one or go for another. This can only be done on invitro babies. I understand the concept. When I was pregnant I had the appropriate blood test with my first child.
At first I told my doctor I did not need it because I would keep the child no matter what. My doctor was a devout Catholic who did not believe in abortion. But she told me a story that that changed my mind. She had a patient who had twins and one of them had spinal bifida and they found out early so the did Cesarean section and had a specialist on hand to immediately work with the baby. She said it could make the difference between a child walking or not walking later in life. The child is fine, keeping up with his twin. It was a powerful story and incited me to get the test. Knowledge can be power. I also decided it would prepare me to accept whatever was coming before it happened.
I was older with my second pregnancy and my doctor suggested an amniocentesis. I again complied, remembering the above story. My first child had been fine so I was feeling more confident, but wanted to be sure since I was older. And selfishly I wanted to know the sex. Patience had not come to me yet—stay tuned for that. We found out after a boy we were having a healthy girl and were ecstatic. The perfect family. I had recently gone to a part-time job, actually a job sharing partnership so I would have more time to devote to the children while still bringing in a good income. All our plans were all in place.
I had some complications, but she held on until thirty-seven weeks and was born small at 5 pounds 10 ounces, but could breathe on her own and was fine—we thought. At two months old she started having seizures and our life exploded. Our plans went from slightly awry to completely decimated. Our daughter went from a few seizures to hundreds a day. It was devastating. We had long hospital stays. My son who had just started kindergarten saw me at best an hour or two a day during these stays. My husband had just started a new job right before her birth and would stay every third night at the hospital and then go directly to work. My parents came to stay with us to help care for our son.
We went through special diets, hormone shots that made her cry for hours on end, over fifteen different drugs each with its own horrific side effect, two brain surgeries, and then finally we were down to three thirty second seizures a night. She was five years old.
By this time she only had seizures at night and if they did get out of control we had emergency medicine we could give at home. So trips to the hospital were eliminated, leaving us what we felt was a life we could somewhat control and a comparatively life of luxury staying in our own home with our son, our own bed, living room, kitchen etc. … Because we did not know when the seizure would occur we still had to be on alert all night. We put her in between us in bed; luckily she is on the small side and slept in a half haze waiting for the seizures to occur. It was better, but sleep deprivation is not fun. Just ask anyone who has a newborn.
Then we decided to leave the big city we were in. We felt in control enough to leave the medical center that had been out weekly trek. It was time for our daughter to begin kindergarten and the public schools in the city did not have very good programs for special needs kids. Our son had been in a great private school in K–5, but we could not afford two private schools. Our finances had taken a huge hit with me abruptly stopping working and medical bills. So we decided to move to a smaller city with better schools.
We picked smaller city 180 miles away that we had always loved. My husband found a job more quickly that we expected and several months later we were packed and there. The day we moved in our daughter stopped having seizures and has only had the start of four or five in over a year. We have several theories, but one can really figure out why. We are just counting our blessings and lots of sheep. We have finally felt confident enough to move her into her own bed in our room. She is becoming more cognitively aware. We are taking her down on her medications. And life is much better. My husband and I marvel at how much better we feel with sleep.
Caroline will always have developmental disorders. She will never be my daughter who goes to Wellesley and becomes the first woman at something like I dreamed about. She gets a virus and gets really sick and stops walking and we have to coax her back to walking again and after months of helping her, she walks, then runs on her own for six months. Then boom, something happens in her brain and one day she refuses to walk again.
But, no child has a prettier smile. When she was a baby, people would say to me—oh, I thought you were carrying a doll (don’t ask me what that says about me). She was that beautiful and still is. She is coy and can charm the pants off anyone without saying a word. She knows a lot. She gives me the most knowing looks. We have our own secret language. I will tell people she wants this or she is saying that and she will squeeze my hand gratefully. I told her I would never give up on her and she gave me a bear hug.
If someone had told me back when I had that amniocentesis what was coming I would have run screaming from the room. People will say to my husband and me that we were the perfect parents for our daughter to have because we are so patient with her. We wait until they are out or earshot and laugh out loud.
Patience, us—we were the least patient, we were the parents that had an amniocentesis to find out what sex our baby was because we could not wait five more months! One day we had a heated argument in a hospital room only later to realize that everything we had said was caught on film and tape, our daughter was staying on the Epilepsy Monitoring Unit to monitor her seizures. We decided we gave the neurologists some entertainment on an otherwise boring night. We have learned patience and it has not been easy. It has been an uphill battle for each of us every step of the way. Try being patient to a sweet little kindergartner boy who really needs your attention after being up all night. One look into his big innocent blue eyes and you swallow all irrationality and tiredness and you do it. It did not come easy, but we did it.
I am not telling our story for sympathy or accolades, I know many who have gone through worse. It’s a club you unwittingly join when you have a special needs child. The funny thing is once you get in the club, you don’t want out. People approach me with miracle cures and I listen politely and go on my way. I think, well my oldest child isn’t perfect either, but I wouldn’t change anything about him. I certainly would like all her physical ailments to be gone and pursue help for those. And I don’t want the seizures to begin again. But I thinks she has the mind she was meant to have. And I think we are the family we are supposed to be, imperfect, loving and sometimes impatient with each other. We have been through hell and back as a family. But for all the problems it has wrought us as a family, its blessings have been twice-fold.
My son learned compassion at a much earlier age then I did. He also learned life is not always fair, but when it is not you deal with it. You take what you have and you deal with it. You keep going, you keep trying and you do the best you can. You have hard times in life, but you relish the sweet times. And probably the best lesson of all, you don’t worry about the small things. My son and I don’t even worry about the small things, ever. We are astounded that other people do. I remember when I used to, he never has. We didn’t have time to warn him about what was to come with his sister, it just happened. We all had to mourn her not being a “typical” girl. But now she is who she is and we don’t really think about it anymore.
So while I watched the segment on designer babies, I related to the parents who were having their embryos tested. I was once one of those parents. I had a whole designer life planned out. But what’s that saying? Want to know how to make God laugh? Tell him your plans. And after all, who’s to say plan B isn’t better?