Looking Past the Needs to See the Child

February 21, 2016 cognitive delay, Family Stories, large families, LInear Nevus Sebaceous Syndrome, older child adoption 0 Comments

More than a few times, my husband and I have looked around us and wondered out loud how this all happened. How on earth did we end up with 12 children? Have we really spent a cumulative three months in China and Vietnam adopting some of our children? Who plans this? Certainly not us.

When we were first married, our plans extended to having four children. This is the number of children in my husband’s family, and it seemed like a pretty big number to me, coming from a family of two children. Oh, and I also thought it would be pretty smart to be done having children by the age of 35. It’s what all the experts suggested and one wouldn’t want to run the risk of having a child with a genetic condition. That would be just too much to cope with. You can see why we are sometimes baffled at how life has turned out.

Now, in full disclosure, I used to daydream about having a large family, rather than the one brother my parents had provided. I always suspected that it was a lot of fun and really wanted to experience it. As a child, I even made up my own imaginary large family and placed myself (the oldest) firmly in the middle of eleven other siblings. And if you had asked 11-year-old me what my favorite documentary was (you know, because don’t all children have a favorite documentary?) I would have named Who are the DeBolt’s? And Where Did They get 19 Kids? I loved it and was fascinated by it and sort of wished my parents had done the same thing. So the seeds of our large, unusual family were planted early.

And then we had five children the usual way. In between numbers two and three, I did spend a season writing (yes, it was that long ago) to various adoption agencies asking for information, but we never went farther than that. After our fifth child was born, things changed. First, we had ventured, however timidly, from our original plan. We so enjoyed being parents to the first four, we found that stopping didn’t feel right. The first four were so much fun and such interesting people that we really wanted to find out who number five would be. This despite the fact that I was 37 and two years past my self-imposed age limit.

Thus number five was born, a beautiful, healthy, happy baby boy. I would rock him and nurse him and enjoy him… and weep. Weep inexplicably for a little boy who did not have a mother to hold and rock him. A little boy whom I didn’t know, but cried for all the same. I was so happy with the baby in my arms, yet so sad about this unknown little boy. We also came back around to discussing adoption. With our family growing larger and us growing older, it seemed that if we were truly serious about adopting, we needed to start the process.

Due to our family size, we ended up applying to the Vietnam program which was in the very beginning stages of reopening after several years of being closed. I was convinced that our paperwork needed to be ready to submit the second adoptions would begin again, and thus we were referred a child nearly immediately. He pretty much filled every box we were hoping for. He was healthy except for a very small (and resolved) birth defect. He was three, but we had done babies and had a fairly high age range we were open to. He was in foster care, which according to my extensive research was really the best thing for children. He was described as very bright and clearly he was very handsome. We were over the moon.

There are certain moments of one’s life which you know are defining; those times where even in the midst of them, you know without a doubt your life will never be the same. Adopting this son is one of those moments for us. Even as we were signing the papers, we knew, without a doubt, that we were inescapably changing the course of our lives and our family.

I know some parents bring a child home and over the course of time realize that their child is affected by trauma. We knew right away. We didn’t have the words for it, but we saw firsthand the effects. There was no honeymoon, no calm, no happy moments. This beautiful child fought against our love with every fiber of his being, unable to control the rage that seemed to fill him. The raging was immediate and my most vivid memory is panicking that we had ruined our family. I had no idea how we would survive this Tasmanian devil of a child. This was not what we signed up for. How were we going to cope? The internet provided a lifeline of more experienced parents who shared their stories and talked me back from the edge. We brought our son home and life settled down into a new normal. This normal involved feeling as though we were living with a ticking time bomb interspersed with us assuring ourselves that things were getting better.

That first adoption trip changed us in other ways as well. We spent the better part of three days interacting with our new son in the orphanage. (The reason he was there and not with his foster family is another story in itself and must be saved for another time.) Thus we spent three days with multiple children and babies who had lost their original families and who were starved for attention. The ayis did their best, but there were so few for so much need. To see and hold children who are starving for love changes you. You cannot un-know what you now know.

My story is getting long, so I’ll jump ahead. Despite the ongoing difficulties with our son, we decided to adopt again. We brought home a 2-year-old son with a repaired cleft lip who was the size of a nine month old. When we met him, we were shocked at his size and delays. We had no idea whether he would even be able to learn to talk, as he had no language. It was scary.

We now had seven children, two of whom needed a lot of parental energy. We weren’t sure if we were done or not, and having had the door to more adoptions firmly shut more than once decided to let it go. Imagine our surprise when we discovered I was pregnant! Imagine our surprise when I discovered I was pregnant with twins!

Our identical twin girls were born and we were now a family with nine children. We were done. This was a very full plate and we were happy with our family. Tired, but happy. And our son really was getting better this time, right?

Then a friend sent me a link to a story about older child adoption and language loss. It was interesting and I found myself looking around the website. The website was an advocacy website for adoption from China, something I never looked at because we were done and didn’t come close to qualifying for China. Why torture myself? Yet I spent a couple of moments poking around and came across a picture of a little girl. A little girl with a significant facial difference. I remember looking at her and thinking this was a child who really needed a family. Then I read the description of her. It said that she wanted “a Mommy and a Daddy to love her and sing to her and cook her good food.”

But we were done. We were done and with not a lot of free time and few financial resources. Every five hours or so, I would go back and look at her photo and read the description. And then spent the rest of the time telling myself exactly how insane it was and how her needs were far more extreme than we could cope with. Rinse, repeat, over the course of a month.


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Once again, I find I need to cut my story short. As crazy as it seemed to us, we went ahead with another adoption and brought our daughter home in 2012. Yes, her needs are significant, complicated by the fact she has an extremely rare genetic condition that few doctors really know about: Linear Nevus Sebaceous Syndrome (LNSS). I now have a lot more doctors’ business cards in my wallet. And yes, I can actually say that now we are finally seeing some healing for our oldest adopted son. It has been a long, hard road and we have finally learned that it will be a lifelong process for him, and not a one time, easy fix.

This is all the set-up for the last part of my story. Once again, we were done. At least we thought we were. Ten children, multiple doctor’s appointments every month and sometimes every week, somewhat regular surgeries, etc. etc. And then another picture. This time a picture of a little girl with what I knew without a doubt was Linear Nevus Sebaceous Syndrome. Like my daughter, she had been misdiagnosed, due to the rarity of LNSS, and I spent some time emailing the foundation caring for her about the possibility of her having a different diagnosis. (They were very gracious to the potentially insane woman who blindly emailed them, telling them their diagnosis was wrong. Some days I do not recognize myself anymore.) I spent time advocating for the little girl. I knew she needed a family. I had seen my own daughter begin to thrive in our family.

There must be a family out there who would see her need and respond. Yet I heard nothing but crickets.

Not one person contacted me to ask about what life with this syndrome was like. I know the list of needs is scary, but still…. This was an ongoing complaint to my ever-patient husband. He finally said to me, “Look, tell me when you win the lottery and we’ll see about bringing her home.” The next day, I open my computer and the first thing I happen to see is a post announcing that this little girl had been given a $25,000 grant towards her adoption. Yes, you read the number of zeros correctly. It was the adoption equivalent of winning the lottery, even my husband had to admit, and we called our agency.

At the same time, there was another little girl to whom I had a visceral reaction upon seeing her picture for the first time, and half-heartedly advocated for. Half-heartedly because even though we were in no position to adopt again, I almost couldn’t bear the thought of her living with another family. I would sternly berate myself for this, because it was so selfish. With the appearance of the giant grant, I suddenly had crazy ideas. What if we could scrape the extra money up somehow and adopt two this time? We asked for her file and understood why she still waited, even though on the surface her needs seemed minor. A (very) sketchy CT scan can scare people away. I will admit that we did a bit of deep breathing ourselves, but plunged ahead.


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I’m so glad we plunged. We now have two new daughters sitting around our dinner table. Beautiful girls whom we are so excited to have in our lives. I can’t say yet whether the worst-case-scenario will play out for one, or if the other will make the same developmental and intellectual leaps that her sister has made. Only time will tell.

But after more than 2000 words, here is what I really want to tell people. We have learned so much from our children over the past 10 years of adoptions. First we are both stronger and weaker than we knew. We have come through crises that we thought would do us in, while at the same time learning that we really don’t know as much as we thought. Second, medical stuff is manageable. Notice I didn’t say enjoyable. I’ve learned to inject saline into ports inside my daughter’s head. We’ve had children go through multiple surgeries. We are on a first name basis with our therapist. I can pronounce the names of a long list of seizure medications and tell you which terrible side-effect each of them gave our daughter.


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Lastly, we have learned something about humanity. What used to scare us… genetic conditions, low intelligence, the possibility of never being able to live on one’s own, ongoing medical issues… don’t seem all that important anymore. These are our children, despite the window-dressing of medical needs. We know them. We love them. Not despite their needs, but just because of who they are. We know their likes and dislikes. We celebrate their achievements and mourn their disappointments. We encourage them to do their best and accept them at face value. Just as we do our other, typically functioning children. Very quickly, you stop seeing the differences and just see the child. This is true whether the child has a visible facial difference or an invisible, emotional need.

They are just our children, quirks and all.

……….
– Guest post by Elizabeth Curry who writes at Adoption.com. You can read more on her blog and contact her by email here.



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