Kids are scary

Kids scare me!

I never though I would say that before we had Arianna, but truth be told, she scares me. She scares me even more so because she's a preemie.

I have been going back and forth thinking about having another child. I probably will once I work through all these feelings, but the fact is, being a parent is scary.

When I was pregnant with Arianna it was no secret that I was not happy about it (note to self: never use the birth control patch again). I became pregnant at a skydiving boogie (the first and only one Shawn would go to) and it ended my promising skydiving career. I was so totally engulfed in skydiving at the time that it defined everything I did - from what I wore to how I talked to how I spent my money etc. It was surreal. Getting pregnant ended 'my fun'. I was pissed. My entire first trimester was spent in a deep depression, I cried every day. I cried not because I was going to be a prent, but because I was fully aware of the responsability that went with it and would have to 'grow up'. I was actually happy about having a baby because I always wanted to be a mom.

But not once during my pregnancy did I think that my child might be deformed in some way (ok, while waiting for the downs screen I did think that for a moment). There was some concern about me delivering early due to some cervical cancer scares/treatment when I was 18. But that would be due to incompetant cervix which, at my 20 week ultrasound, was determined not to be an issue. So I went on my merry way.

Then she came early, very early. At 28 weeks they have no fat on their body. You don't expect, when you first see your baby, that they would be 'wrinkly'. I didn't expect, when changing her diaper, that you wouldn't be able to tell where her 'nether regions' where because there was no fat to define it. I will always remember holding her that first time and being able to see all the bones in her skull.

I remember when I went into Labor and I was laying on the bed in the ED and the doctor came in, did an exam and said I was 3 cm dialated. My reaction surprised me - I was excited! My baby would be coming soon! I was born at 30 weeks (I thought 29 but my Dad corrected me) and because I 'turned out fine' I wasn't worried. So even those first 5 days when we were in the NICU prior to moving to the step down nursery I was ok. I chatted with the nurses and read books and was happy. My daughter was doing great - she was off the ventilator after 18 hours and only on CPAP for 2 days after that. She had her first bowel movement without problems and was even taking my breastmilk via gavage - she was doing great and everyone we saw told us that.

The real scare came 4 days before she was to go home (40 days after she'd been there). I arrived at the hospital after work and a woman with a large machine was at her crib and had a probe on her head. Huh? I asked her what she was doing and she told me a cranial ultrasound to look at her brain. Um, why are you doing that? Talk to the doctors I was told. So I asked one of the nurses what was going on and she said it was a follow-up cranial ultrasound (why would one need a follow up unless the first was questionsable?!), but she checked her chart and was told that the first one came back fine. In reality, I would learn at her first pediatrician appointment that my daughter had an MRI and it showed a grade II intraventricular hemorrage (IVH). In addition to that she would have her hearing tested multiple times and we took home a baby we believed was deaf.

Suddenly she wasn't the normal baby I thought she would be. She wasn't the normal baby I was led to believe. All the media and all the stories about premature babies say they just need time to 'catch up'. My family, who is well versed with preemies, all said she'd be fine. Friends, coworkers, perfect strangers all said the same thing. Well, now I was sad for her - because she wouldn't be 'normal'. She may have brain damage! This is not normal. She may be deaf! This is not normal.

Arianna's birthday is coming up and, so far, she is doing fabulously! She's starting to walk, which is ahead of her developmental timeline, and she babbles incesantly. Although she continues to 'fail' her hearing tests its because of fluid in her middle ear which will hopeful subside in a few months. She's been in the pediatric intensive care unit at our children's hospital twice in the last year, but never for long and she always 'bounces back' quickly. She is doing really well.

But I realize how lucky we are. I know of a cute little boy born at 30 weeks (so 2 weeks after Arianna) who would develop a horrible brain hemorrhage and will be severely disabled. I met a ex-32 week preemie young woman a few weeks ago who was in a wheel-chair due to her cerebral palsy (a result of her brain hemorrhage). But I know many more who are perfectly fine (myself and my brother (and ex-32 weeker) included).

This makes me scared of trying again!

Because we've had one preemie I have a very high chance of having another. While we will try every precaution known to modern medicine it has a good chance of not being affective. So we'll have another preemie. Prior to learning about IVH the thought of trying again wouldn't have bothered me in the slightest. After Arianna came home I started looking for preemie support groups and, unfortunately, learned so much about the affects of prematurity that I'm scared!

I also understand that even full term kids can have trouble, but the chances of an IVH are much higher with preemies, so the 'gamble' of having a kid if I was sure it would be full term is something we feel ok taking. The 'gamble' of having a kid that would be a preemie? Not so sure, yet.

Would I feel ok being a parent of a child with a disability? Given time, yes, I'm sure I'd love that child with all my heart. Would I wish they weren't disabled, you betcha! But I doubt I would love them any less. But knowing how I am with finances and financial planning, it would be very nerve wracking in the begining. Finding a daycare or nanny to take a disabled child would be close to impossible so I would have to quit my job. Quitting my job would create money problems which would strain our marriage and could cause a divorce. It happens often to families with disabled children, and that is very scary too!

The worst part of a child disabled due to an IVH is that they 'look' completely normal. The US seems to be more understanding of people that 'look' disabled - such as downs or para-palegic. I wouldn't have to explain anything to people as they would know my child was 'disabled'. Its similar to hearing "oh, she just needs time to catch up, she'll be fine!", when in reality, that child could be classified as 'mentally retarded'. I know this is the case as I see it with my mother.

I love my mom. My mom has bi-polar disorder and is a recovering alcoholic, and as a result is on social security disability and will never be able to live on her own. I know that if my father passes away I will be left with the responsability of caring for my mother. But my mother is looked at, by the general public (and to some degree, her family) as being lazy and unmotivated. In reality, she is truely disabled - she can't hold down a job or handle things that would be needed of something 'on their own' (financial aspects, car maintenance etc.). But she 'looks normal' (whatever that is). She doesn't look disabled. I see the affect this has on her when she' out in public and even in psychiatric hospitals - its almost like its bred into US society.

Thats why I think its harder having a child that is disabled and 'looks normal' vs. having a physical disability.

Anway... getting back on track. Kids are scary! So scary that it makes me question having more children. I know every mom goes through these feelings and it will just take time, but the worry is always there and I guess the degree to which I let it affect me will answer the 'should we have more kids' question.

I remember seeing a book once that was about 'letting go of your views of the ideal child and loving the child you have'. I've searched far and wide for it and can't find it, so if anyone knows what I'm talking about, please let me know. I want to read it now.