Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13

Saturday, June 26, 2010

My little brother

I realized the other day that I've mentioned on here before that I have a little brother who I don't see anymore and who I miss on a daily basis. I've referred to him frequently as I've talked about experiences that have made me more afraid of losing my neice/nephew. And I'm sure he'll come up again over the next few weeks/months.

So here is the story of how I grieve for a person who is still very much alive:

I'm fairly sure I've mentioned before that my father married someone who I wan in high school with, a girl 2 years older than me who he'd been abusing (versus being involved with; I don't see how their relationship is her fault really as she was a kid) for a really long time. Oh, and he was her teacher when it started. All that is a really long story that is rather sensational sounding (ie you would think I pulled it from the headlines; the only reason that didn't happen is the school district involved hid it and got him out of his teaching job).

I'm cutting many years out of this, but after my parents were divorced when I was 19 he immediately married her. 2 months later I found out I was about to be a big sister again. I was 20 years old. I also had been successfully backing away from him for about a year. When I learned about the baby I decided that I did not want to ignore this child's existence, and that truthfully the baby would need people not his parents in his life to watch for signs that things were hurting him/her. So I gave up the break from my father and plunged back into that bizarre situation.

I was supposed to be present when the baby was born. It refused to reveal if it was a boy or girl, and the doctor thought girl because the heartrate was high. However the doctor didn't know the mother was smoking through the entire pregnancy. It also failed the blood screen for chromosomal abnormalities, but further testing was fine so it was a false positive.

Several weeks before the baby was due my uncle died in a state about 12 hours away. The doctor cleared the baby's mother to travel because there was no sign of impending labor whatsoever. On the way home she went into labor. They drove as far as they could but the baby was born in a city a couple hours from where he should have come. I couldn't make it for the birth. This turned out to be a good thing as the call he was coming caused me to crumple to the floor and cry for many, many hours. I was clearly not quite as ready for him as I thought, on top of grieving for my favorite uncle.

At 3 Am the phone rang and I had a little brother with good APGAR scores who was staring all around and seemed fascinated by this new thing called earth. At 11 am the phone rang and they were taking him via ambulance, on a ventilator, to the children's hospital ICU after he stopped breathing twice and the 2nd time they couldn't get him to breathe again. The calls over the next hours were awful. He'd had a severe type of stroke; they couldn't assess the damage for several days/weeks (I don't remember now) because all they could see was blood. (he had the less common type of stroke where a blood vessel bursts, rather than a typical stroke where blood flow to an area is cut off. His type of stroke is more serious and had a much high fatality rate). He had also had several seizures, so was receiving multiple seizure meds. At that point the outlook was bleak and the best outcome was for a severely disabled child. I lost it. All the months of bravely facing this and making decisions about involvement totally fell apart. My friends made many phone calls to professors to get tests and papers that were due that week and the next in large quantities moved and I struggled to go classes. I went as I could, mainly if a friend could stay and monitor the phone. I made the painful decision that if he was going to die as it appeared I didn't want to go and bond. I knew that I would regret that in many ways, but I also knew that I'd have regrets no matter what I did and no matter what happened. When he was about 4-5 days old he ripped out his own vent and started breathing without difficuly. 24 hours later he was the step-down ICU with a much improved prognosis. The bleed had stopped and had begun to clear, meaning he wouldn't just bleed out into his head and the seizures were controlled. I went to see him and about 2 days later got to accompany him home, weeks before they had originally thought possible. The degree of brain damage was not known yet, but he was alive.

The time I spent with him in the NICU was strange. The didn't have anything set up for adult siblings, so we were given grandparent passes. His last full day in the NICU his parents were doing all sort sorts of required classes on CPR, caring for his apnea monitor,seizure management, etc. so I was allowed to stay with him all day. They took him to be circumcised and he came back crying. I've never felt anything like it when as soon as he was cuddled to me and I had a bottle for him he relaxed, took the bottle and snuggled in for a sound nap for about an hour.

His first 4 or 5 months were rough. He didn't reach milestones because he was so drugged. There was no way to predict what his outcome would be, but the doctors expected he would have some learning disabilities if not significant developmental delays. However, they also admitted they had never had a baby with that severe of a bleed and the seizures that indicated the brain was damaged survive.

When they tapered the seizure meds after he hadn't had one for a significant time period this amazing little guy appeared. I remember laying on the floor reading to him one night, just a silly Dr. Seuss book (Marvin K.Mooney will you please go now!), and something about my facial expressions and tone of voice was absolutely hysterical to him. He began to remember me between visits and although he did everything at his own pace he grew and developed all the skills he should have.

I totally fell in love. Yet knowing how messed up his life was likely to be because he was growing up the child of a child molester and the victim of that molester, plus all the abuse I had suffered from my father, I couldn't stand it. I wound up depressed and in counseling. At the beginning the therapist asked me if I wanted to just take him away. At first I lied. The next visit I admitted that it was all I could do to not just steal him and take him far away from what awaited him. And that was how I began to finally admit to the psychologist what really happened in my home. I had a very hard time for months, followed by my first really manic episode which I downplayed and therefore still wasn't diagnosed. After I crashed from that I did agree to antidepressants finally and my next 11 years were trial and error of medication after medication.

When he was about 15 months old a lot of stuff happened. This was during a period I was so manic and going through so much emotionally that I didn't sleep for weeks on end, so my memories aren't totally clear. But essentially someone accused my father of molesting their now-adult daughter, my childhood playmate and neighbor. There had come a time when suddenly she would not play with me at all that had never made sense, and I believe she told her parents I had done something because they constantly invited my sister to do things and ignored my existence for the most part from that point on. There were suddenly reports to children's not-protective services about my brother's care, destruction of property at my father's home, and anonymous threats, all of which came from the furious parent of my friend. And suddenly my brother's mother realized that her whole relationship was based on child abuse. I was with her when she realized, and have never seen anyone turn that white that fast. That night was when I found out that my parents had known since I was 2 about my grandfather molesting me. I somehow made it through the last week or so until I went back to college, and then practically moved into the counseling center for the next 4 months. During that time I was getting up to 6 hours of counseling/week and spending hours doing homework for it. I cut back to the minimum number of classes and my attendance was spotty. I gave up pretty much everything but work, because I had to do that.

At first there was so much fear. And then my brother's mother actually left. She called me from a shelter for abused women, which is where they lived for the next year or so. Ironically it is about 6 miles from my home now. We stayed in close contact for a long time and I actually lived at the shelter with them (in the halfway house) for 6 weeks so I could watch my brother while she was out of the country on military duty and I was taking a course I had to finish before grad school.

During those weeks (she was home part of it) we worked out a lot, including that she would work to keep his biological siblings part of his life. She knew that I had cut off contact with my father and that I had worked so incredibly hard to be comfortable with having this surprise sibling that I didn't want to lose him. Plus, I was special to my brother. We loved each other a lot. She continued to promise that we'd still be in touch throughout a horrid custody battle that ended with my father losing all visitation, rights to any parental decisions, etc. and was ordered to pay the highest child support possible (there was a penalty included or something). That was when my brother was about 2 years old I think and he'd rarely seen our father since he was 18 months and the child welfare system began to realize he wasn't a safe parent (not that this kept them from turning around and giving him a month's visitation just before they decided he was too dangerous to even have supervised visitation. Duh.) So he has no memory of his father. His mother promised that she didn't want to remove his biological family from his life and that her intention was for him to grow up knowing that he had another father, who wasn't well enough to be with him, and 2 sisters and a brother. This worked great until just after he turned 4 1/2 and she suddenly had no contact with me. Emails, calls, etc. went unanswered.

5 years ago I heard from her. They'd moved to the city where I used to live, where I see Dr. Mind, so were only an hour away. My brother was a 2nd grader then, and despite the doctor's warnings after his stroke that he would have learning disabilities he was a straight A student and doing wonderfully. He remembered me and asked about me a lot. I kept trying to arrange visits and she'd say yes and then back out. Ultimately I realized this was making my moods go nuts (enough I had to go on a new med) and so I very honestly asked her to be sure she really felt she could handle this because i was having so much trouble coping. I wanted her to tell me if it was too painful and if it was then we could try again later. I haven't heard a word from her since.

My brother is now almost 14. When he turn 18 I plan to start trying to find him on my own. When he is 23 and has had time to finish college and really grow up I plan to do whatever I have to in order to contact him. If he doesn't choose to be part of my life that's fine, but I need it to be his decision. People have told me for years that he will remember me and be curious about me and probably eventually seek me out but there is no way to know this will happen.

In the meantime I have had to deal with what has to be one of the cruelest ways to lose someone you love: he's alive and nearby and neither he or I made the choice nor can either of us do anything about it unless his mother makes a new decision. He is my brother and I did nothing wrong, although my father certainly did, and still I am the one who has lost so much. So has my brother, as I'm an awesome big sister :), but it is one of the great losses of my life, and it's not like I haven't had my fair share of those anyway.

So now you can probably see a little more clearly why having this new baby come into my life terrifies me. I don't want to love him/her and then lose him/her to something totally unfair. I have a hard time not equating loving babies with getting hurt, especially since this has also happened with my friend's baby, the friend who decided to keep her child from me because of my demon possesion (aka bipolar).

There is no feeling stronger when I think of first holding this new little one and falling in love with it than fear.

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