Adapting

There is something about talking to my parents that makes me feel like I'm 12 years old all over again with no control over my emotions whatsoever. Over the years, I have cried to them about everything from junior high school gossip to my career choices. Strangely, it doesn't seem to matter why I have called or stopped by to see them in my childhood home. If something is bothering me, I look into their faces and it all spills from me, whether it's something I intended to share or not. I could call to ask my mother about how to best thicken gravy and end up sniffling into the phone and talking about something much closer to my heart. However, when I step out their door or hang up the phone after visiting with them, it seems that I never fail to feel better and am usually smiling. I don't know what I would do without them.

For the first year of Erik's diagnosis, it seemed that every time my parents came to our door, I was in the middle of a big, ugly cry. It was part of my daily routine. This went on for months and then almost a full year. A few months ago when my mother came to pick up Erik, she said it was nice I wasn't crying all of the time anymore. Now that I think about it, I'm not sure why I didn't succumb to simple dehydration. I did cry a lot, and it was probably very difficult for her to see me that way.

Strangely, I now find myself in tears less than I ever have in my life. My sloshing reservoir of sloppy emotion seems much lower than it used to be. However, I won't worry about this phenomenon unless the tears stop completely, in which case I will declare myself completely dead inside and will check into a facility with a soothing-sounding name and baby blue paint on the walls. I'm simply a more seasoned, weathered version of my former self. There's good and bad that comes with this. I'll never be the same. However, I don't sweat the small stuff so much anymore when it comes to my child. The other day I was checking a label on something I was about to share with him as a treat. My eyes quickly scanned for the words "aspartame" or "saccharine" when I suddenly thought, "Oh gee, Nance, one spoonful isn't going to kill the kid. He's missing 25 freaking genes for Pete's sake. I think artificial sweetener is not his biggest problem. Let it go." How awful is that? I haven't worried much about terminal cancer or the normal variety of sudden death in my son. The usual worries that accompany motherhood are still present, of course, but I hardly feel them. It's sort of like trying to tend to a paper cut in a web space between your fingers when someone walks up to you and suddenly kicks you as hard as they can in the shin with the tip of a steel-toed boot. Oh, sure, the cut is still there, but you sure as hell aren't thinking about it anymore. All you can think of is the throbbing pain in your leg.

Now that the tears have dried to an acceptable level to where I can enjoy time in public without rivers of snot running down my face, I find I am actually thinking clearly and honestly. At least, that's my perception of myself. You may think I'm crackers, and I'm okay with that.

Today I was talking to my mother as Erik made us laugh over and over fetching books for his Boppa to read to him and showcasing his wonderful personality. As I was talking, out came the thing that was bothering me most at the moment. Amazingly, my eyes remained desert dry. I confessed to her that I was terrified because the time was coming when Erik wouldn't be cute anymore. In short, I asked her, "Then what?"

There was no hesitation on her part. She said the perfect thing to say at the time, which was, "I don't know. He'll be different."

Neither of us know. Since cute is pretty much what he is and does best at this point, the thought does indeed terrify me. Yes, I keep telling myself I will always love him, but I can't imagine myself loving him any more, and I'm now questioning my own capacity to love him in the future. After all, motherhood wasn't the most natural thing in the world for me, and it took months to bond with him as a baby. I have always wanted to give this kid the moon, but sometimes I just don't know how.

This is the reason I fear meeting other WS adults. This is difficult for me to write, but it's the truth, and I refuse to pull any punches here. I have to face my fears, as my boy is growing like a weed. At a BBQ we attended last weekend, he was easily taller than a fellow partygoer who was 3 years old.

I'm afraid of losing cute.

Will it happen gradually, or will we look at him one morning over the breakfast table and see a lanky stranger? I believe Brian and I have been quietly mourning the passing of Erik's baby phase. I sat on Erik's little bed the other day with the blue box I keep on the top shelf of his closet that holds a random collection of things I put there for safekeeping. This includes the notebook in which I recorded each hellish feeding for three months. Okay, so that's not a good memory, but struggling along with such a precious, tiny creature is a powerful memory I don't want to let go of. I want to keep the memory of me and my baby locked together trying to survive yet more wee hours of morning, both of us in excruciating pain with tears on our cheeks. I returned the notebook to the box and retrieved the powder blue pacifier that was always in his mouth as he slept and kept the burning acid down in his throat. My fingers passed over the worn leather slippers with the smiling monkeys on them and the jagged holes from crawling and dragging both of his big toes, the cards we received around the time of his birth, and the little photo book my mother made to document that first year of his life during which we were steeped in ignorance and before I set foot in this strange, new world. It was hard to close the box, but keeping it open was even more difficult.

I came to the conclusion that these kinds of changes generally happen gradually and mercifully. After all, that's how my baby disappeared. His legs began to lengthen and his hair began to darken. The chub in his cheeks began to drain away, and he began bonking his head on things around that house that were formerly safely out of range. Now there is very little baby left to see. There are times I creep quietly into his room and watch him sleep, when I catch just a glimpse of my baby boy with his lips slightly open and his body curled up next to his stuffed animals.

I have been thinking a lot about change lately. For example, the whole concept of pregnancy, while it was something I wanted desperately at one point, created in me a gigantic case of the heebie-jeebies before my personal experience with it. I read about the weight gain, the fact I would have 50% more blood coursing through my veins, and how my baby would compress various internal organs, causing me great discomfort and trouble breathing. I went into it knowing these things and was very pleasantly surprised. Because these changes were so gradual to me, I hardly felt a thing. Getting up 10 times at night was perfectly natural and acceptable. People I hadn't seen for weeks were amazed at my increasing girth, but the changes were indiscernible to my own eye. When I answered the phone gasping for oxygen after a trip down the stairs, someone asked if I was okay, and I had no idea what the caller was referring to. A friend of mine found it quite amusing when he told me I didn't look pregnant at all and I enthusiastically agreed with him. Apparently, he was being sarcastic! Because of the gradual nature of these massive changes, there was very little discomfort, and I was able to enjoy a full 41 weeks of pregnancy. I am so thankful for every moment of this experience.

I imagine the changes that come as Erik grows will continue to occur slowly, too, allowing us to adapt to any new challenges that come with having a growing boy who is different. I imagine that even at this point, challenges that likely look massive from the outside are likely much less overwhelming to me, as I am accustomed to them. I anticipate many new challenges for us to face and adapt to. In the meantime, I will face my fears as best I can. What is most important is that looking at this kid makes my heart swell with love.

I just pray that I never lose that.