Sep 17, 2010

Great Expectations

by Jenny of Lil' Samsquatch.

While I was a teacher-in-training, we heard a lot about having high expectations for our students. We were taught that our students will rise to the expectation that is set. I believed that ~ still do. After I finished my schooling and went into the classroom, this time as a high school teacher-in-charge, I found this to be true. I treated my students like little adults. They weren’t yet adults, just little adults ~ adults-in-training if you will. I expected them to treat each other with respect. I expected them to think and to work. I understood they had some learning to do, that they lacked experience…but that was ok. That’s what I was there to do; I would teach them and offer experience and in turn, they would grow, develop, and progress. And it really worked quite lovely. I adored teaching and adored my students. (After many years, I still get emails and wedding announcements! Love it!) When it came to parenting…being a mom-in-charge…I always believed the same thing that I believe in regards to my students. If I have great expectations (and smother them with love), then they will rise. Expect them to think and work. Expect them to respect and love as I respect and love them. As their mom, I’m there to help teach them and offer them experiences that would help them grow, develop, and progress. It’s really a beautiful relationship.

When Samantha was born, I was told not to expect much. She had a small brain (microcephaly) – way smaller than average. Hours after she was born, a doctor entered the room to talk with both me and my husband. He painted a picture with little hope. I’m sure he, like many doctors, understood that science doesn’t hold all answers, but in that moment, he was writing her destiny in stone. After the initial shock, I was absolutely crushed – because I believed the doctor. The expectation was set. Before she was born, we knew Samantha had microcephaly. I had done the research. I had hoped and believed that she would be “more” than what I had read, but when this doctor told me everything that she wouldn’t be ~ as I held her in my arms ~ all hope trickled away with each falling tear, because I believed him. Him. A doctor. Someone who “knew” told me not to expect much. And not only is that just plain hard to hear, but it went against everything I believed – everything within me told me that Samantha was a special little girl, a fighter, a champion, and she was going to do great things. But in a moment of weakness, I was crushed when he said those words. And I believed him. I believed him.

I am Samantha’s mother. I am her advocate. I’d like to think I am also her friend. We like to hang out together. I’m her companion, her nurse, her comforter, her chauffeur, her cook, her maid, her mommy. No matter what this doctor said, I knew deep down to the core of my core that Sammy was amazing and would prove him wrong. But his words have always echoed from the distance. And they bothered me. And I began to limit her in ways I was unaware. Let me give a couple examples: For one, I assumed that she didn’t understand what we’d say. Why? Just because she couldn’t talk, do I assume she can’t comprehend language? A small brain = inability to comprehend? Or how about walking? Imagine running. Whoa. That has been way out of my realm of expectations for her. Sure, we’d prove people wrong…when they said she wouldn’t roll over, I’d say, “She’ll be walking one day.” But I never even imagined that she would be able to run. I set limits to my expectations. Because of Him. The doctor.

Recently, I discovered this within myself…this lack of expectation for Samantha…these limits that I put on my daughter. My mom has always noticed it and pointed it out, and I’d quickly recover… “Well, no. What I mean is…” But she was right. I always thought I was recognizing her potential simply because I was assuming more potential within her than others were assuming. But just because I was doing that does NOT mean I was giving her enough credit for the amount of innate potential within her.

After feeling like a horrible mother for being this way, I realized a lot of us do this. For me, at least, it was a way to protect myself from heartache. If I didn’t expect her to do such and such, then I wouldn’t feel so sad when she didn’t get there. I’ve already cried too much. It was more comfortable to just go with the flow and be grateful. (Just for the record, I still think it’s s.u.p.e.r. important to go with the flow and be grateful.) I also didn’t want to come off an idiot. I didn’t want to be the mom who insisted my daughter was superior to the typical microcephalic case. And, I’ve since decided that’s just plain silly…every mother should believe her child is superior to the typical ______ case. That is being a mom. That’s what hope and love are all about.

This summer I went rappelling. I’ve never done that before, and many of the girls and adults at this camp didn’t do it. It was insanely scary to go over that cliff and trust the person who was my anchor – who was keeping me from plunging to the bottom, and ultimately my death. In my right hand was rope that was attached to my rappelling device. With this rope, I could choose how fast or slow I went down that cliff. I could go at my own comfort level (which to begin with was very slow). In my left hand, I held onto the rope that came directly in front of me out from my harness and also connected to my anchor at the top of the cliff. I didn’t have to hold onto this part of the rope. It made no difference in reference to my safety during my descent down the cliff however, I had to put that hand somewhere, and it offered some stability. Well, I was terrified. So, not only did I hold that rope, I held it quite firmly. I held onto that as if it was the one thing that was going to save me from falling. It wasn’t so, but it made me feel more comfortable. It was something I could hold on to. It was something that, while I went over the cliff, being completely opened and exposed to an environment I had never known in this way before, I could hold securely and somehow from which I felt some kind of comfort.

Well, ya know, when I got down to the bottom, I looked up and felt pretty good. It was fun! What a rush! I had overcome this cliff. And I had a very sore and shaky left forearm and hand to remind me of it! I had held on so tightly to what I thought was saving me that at the end of the journey, I had joy, but I also had a lot of pain.

The next day I went down the cliff again, and I had learned I could relax. I still held the rope with my left hand for stability, but I loosened my grip. It was a much more enjoyable experience.

As I’ve contemplated these newly discovered thoughts about my expectations for Samantha, I’ve realized that I’ve been rappelling and holding on to false security. Not everyone is placed in the role of “special needs” mom. This is a new experience for me. It can be insanely scary sometimes. And it’s hard to go over that cliff and do it…to live it. Sometimes I hold onto things that I think help or save me – like having lower expectations, or NO expectations for my special needs daughter somehow saves me from heartache. As I hold on tightly, and when the particular trial associated with Sammy is over, I find I’m a little achier than I need to be. With that said, I know there are circumstances that come up that will drain us emotionally, physically, spiritually, financially…but I’m looking at the overall picture. Must I create added, unnecessary, pain?

What can I let go of that allows me more joy? For me, it’s been a fight between “reality” and my own expectations for my child. How can I have high expectations for her and still accept the reality of her condition? The reality being that she does have deficits, that she is delayed, and that she may never _______ or ______ in this lifetime. For me, “reality” had taken too much of a role in my life. Over the course of 4 years, there have been two (among many smaller) experiences that have allowed me to release my grip on external expectations and allow my mothering and parental instinct to lead. I’ve felt free to have high expectations for Samantha and that has been most exciting and liberating.

When Samantha was 7 months old she started having horrible seizures. They were out of control and severe. We had an MRI and it was decided that we’d have surgery to open her closed sutures. It wasn’t that easy. There was debate between doctors. Our neurologist, based on his research and experience (shoot ~ he was head of pediatric neurology at Primary Children’s Medical Center!) suggested we not go through with the surgery. His words and expectations: “We don’t typically do this surgery for microcephalic kids. They have small brains. That’s their story.” We sought a 2nd opinion from Cedar Sinai in Los Angeles and after their response, we did the surgery.

Six months later, at a follow-up appointment with our neurosurgeon, Dr. Walker, Samantha’s progress was observed. I told him of some of my concerns, but also about her developmental progress. He told me that in his experience he hadn’t met a microcephalic child quite like Samantha. She had a severely smaller brain than any he’d seen, yet she was functional, and surprisingly, functioning rather well (all things considered). He told me that Samantha doesn’t fit a mold. “She’s done more than I or anyone else would have ever expected.” Here was a doctor, a professional with vast amount of experience, telling me this. I took courage in his words, feeling like I could let go of my grip a little bit and enjoy life a little more. I felt a freeing relief that I could expect her to progress. Up until then, I was holding my breath. Will she? Won’t she? When will things stop? How long will she live? Since I had put so much emotional stock in that first doctor who set a very low expectation for her life, you can imagine my exhale of pure relief (and a bit of vindication for my belief that she would have a very fulfilling life) when a doctor, with even more knowledge than the first (a specialist) told me that Samantha had great potential within her.

For years I’ve reflected on and found comfort in what Dr. Walker said. I would tell people who inquired that I really felt that Sammy had more within her than what we now see, but at times, it was almost as if I had to say it aloud to convince myself, or rather, to remind myself. It was a strange position to be in. I believed in her 100%. But I, too often, still allowed that doctor to invade my thoughts, beliefs, and expectations.

More recently (3 years since my experience with Dr. Walker), I have started devoting a lot of time to studying, reading, and researching. And from this time-well-spent, I have learned some great truths about the human brain. I have found it to be quite correct that the truth shall make us free. In regards to Samantha, I’ve never felt so free to dream and hope. All I’m learning is leading me to other books, therapies, and certain individuals who have been able to help Samantha immensely. And, through those, I am seeing changes in Samantha. I see her potential demonstrated each day. That is incredibly exciting! And for once, I’m starting to let go of that rope entirely and truly believe that she can do anything…who cares what others say? I want to be that crazy lady who believes in miracles, because ya know what? She is a miracle. Anything she does do is pretty great, and I’m ok with it.

A part of me wishes I had never needed Dr. Walker’s validation and my newfound learning to get to this point; I wish I could have just been “good” or “strong” or whatever from the beginning. But I’m human, and I like I said, this is a new discovery for me. I didn’t realize some of these feelings and what was fully going on until recently. See, there are two sides. One is filled with science, tests, diagnoses, data, experiments, and prognoses. The other is spiritual, instinct, intuition, and love (and I’m discovering some research to back it up too, which isn’t necessary, but cool). One takes science. The other takes faith and hope. In reality, I think we need a little of both, but if one is going to lead my family’s path, I think I’ll take faith and hope. I like that anchor far more than I like science that is constantly changing. Twenty years ago, we would have been told to institutionalize our sweet girl because she’d be a burden and wouldn’t accomplish anything. Yeah. I’ll take faith and hope.

I’ve always had that deep inner feeling that Samantha is great. It makes sense to me. I look in her eyes, and it just makes sense. Instead of relying on Him – the doctor – I’ve tried to rely on Him – the Lord. He knows all science. He knows all possibilities. He knows me and Samantha and He just. plain. knows. If I can more fully center my faith on the right Him, and look for the truth that surrounds me, I more easily enjoy peace of mind and far less heartache. My faith doesn’t exclude me from pain and sorrow and frustration and the occasional “why Samantha?” But it does help me remember that there is purpose in all things. And this greater purpose has slowly revealed itself to me throughout the years and will reveal itself in completeness one day. I have faith.

Samantha is 4 years old. We continue to have our struggles that come with special needs, but among other things, I have learned that what Dr. Walker told me about Samantha not fitting a mold isn’t just true for her. Most all kids that I have met or read about don’t fit the mold -- all of your kids I’ve read about don’t fit any mold. Their individual spirits are so powerful. They break molds. They reach expectations and then create a set of new expectations. Our spirits give us drive, allow us to achieve great expectations that only He can have for us.

And so I continue to fight for my baby girl and for all her little friends. I am still grateful for every minor improvement. I get super excited if she opens her hand up a little more than she did the day before. Or when she falls asleep on her own and sleeps through the night! (Wahoo!) But I also now allow myself to be free to expect more amazing things from her. I’m the mom. I set the expectation. I offer the opportunity and experience. I smother her with love. I learn from science and from others and all they have to offer, but follow my instinct. I let go of what holds her, and me, back. And as I’ve let go, we’ve had an increase of joy.

We are happy. And I like that. I like it a lot.


Kristina said...

Wow! You pretty much said it all and it's just what I needed to read today. Thank yo.

Anonymous said...

Thank you so much for your insight... I am inspired!

Anonymous said...

You have such a wonderful family!
My son has micro, and I really enjoy reading about Samantha.
May I ask, what kind of surgery did she have?

Anonymous said...

Samantha is a pretty girl :) My daughter has microcephaly too.

Anonymous said...

samantha's very beautiful, no doubt the doctor isn't looking at some capabilities that are well detected. I see more when i look in her eyes and face. I think though she has special needs, there's something else she can do! :) btw, she is very beautiful!


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