Looking back, and knowing what I now know (and just looking at photos of myself) there is no doubt that my body was starving for nutrition while I was pregnant with my son. I certainly didn't feel as healthy as I did with the first two.
I had a feeling (before Michael was born) that something was wrong with him. It wasn’t a feeling that kept me up at night or made me extremely fearful; it was just a feeling, a little voice. I didn't say anything out loud (other than sharing my thoughts with my mom), afraid that if I said it out loud, that "something bad" would come true.
I asked her what this meant, as I couldn’t help but notice the look of concern on her face. She made it clear that she was not an eye doctor and that it was important for him to be seen by a pediatric ophthalmologist. The fact that she made the appointment with the specialist immediately, herself, frightened me. There was a definite sense of urgency.
I found out later how fortunate I was that she didn’t tell me what she suspected: retnoblastoma.
Less than a week later, while being examined by the pediatric opthamologist, with eyes dialated, it was obvious there was a problem. Basically, he had a cataract, (actually, a bit more involved than just "cataract." It was called PHPV (Persistant Hyperplastic Primary Vitreous) and involved scarring of the blood vessels.)
My baby needed surgery to remove the damaged lens. He would then be fitted with a removable contact lens. Of course, the sooner the better. The earlier he could see out of that eye and the sooner he made those connections to the brain, the better chance he had for vision in that eye. I was scared, naturally. I was depressed. And oh was I tired. It's true, sleep is an escape, and that’s all I wanted to do. Of course, I was also suffering from un-diagnosed celiac at that time (and would be for the next 10plus years!). Oh how much more energy I'd have had had I been gluten free. Clearly, un-diagnosed celiac doesn't just affect the person with it; it affected my kids, my marriage, my family. Oh how much better my emotions would have been had I been gluten free. But----that was the "then." We can only make good with the "now."
(This was the eighties and yes, this was a perm. Oh my, I had a lot of perms in those days, HA!)
He was born with all his fingers and toes, and all the sweetness a mother could ask for. I didn't know the gender of my baby until he was born. The audio recording we made of the delivery made it clear just how thrilled I was to have a boy!
Surgery Day (November 1989)
One month after the surgery, he was put under anesthesia again in order to be fitted with his contact lens. That afternoon we brought home a two month old baby who needed to have this contact lens removed for cleaning on a weekly basis. So I just became the Little Engine that Could: “I know I can. I know I can. I know I can.”
If something is worth having, it’s certainly worth fighting for. I made a promise to my son that I would make this invasive prodding into his eye as easy as a diaper change, and I must admit, I got pretty darn good at changing his contact lens.
The contact lens changes were one thing, patching was another. In order to get his left eye to work, we had to put a patch on his good eye. To start with, we were told to do this for an hour each day. Of course, it only counted if he was awake and looking around; he needed those brain connections and to develop that eye. But he’d fall asleep, or sometimes just cry. He wasn’t seeing anything, and we knew it deep down.
Two months later, we were told that a membrane had grown back in his eye, explaining just why he wasn’t seeing. Back to surgery. This time a portion of his iris, the colored part, was also removed in order to remove the entire attached damaged lens. This left him with what looks like a very large pupil. It never closes in bright light, so he was, and always will be, quite sensitive to sunlight. Sunglasses became a part of his life at a very early age.
By the time Michael was crawling, patching was hell. He would constantly pull it off if he wasn’t kept busy. I couldn’t just put him on the floor with some toys to play with. He needed to be entertained constantly. Since we were up to two to three hours of patching a day, this became very tedious. I’m sure it was hot. I’m sure it got itchy. And he wanted to see as well as he knew he could see out of that right eye.
But I had to be stern. If I would soften up about it one day, the next would be even harder. I had to do this. I felt responsible for his vision. I’d sternly tell him “no” every time he’d rip that patch off, then, when the dam couldn’t hold it any more, I’d go into the bathroom and cry.
Of course patching wasn’t the only problem. Babies tend to rub their eyes at times. Plus, they never seem to stay in one place. It didn’t take me long to be able to detect whether or not the lens was in, just by looking at him. I had to be aware always. If I couldn’t see it, I’d first search his eye, hoping it was just stuck up on top. If not, well.........the alarm went off and the search was on. (Those lenses weren't cheap!)
Here’s where that little voice came to our rescue again and again. If you’ve ever lost a contact lens, you know just how difficult it can be to find. And most times, by the time we discovered it missing, we didn’t even know what room it was in. But his angels (my angels) came to our rescue over and over again! We never completely lost a lens (well, maybe one) that we couldn't eventually find---even two days after one lost lens that seemed to just fall from the top of his head when he looked down (TWO DAYS after losing it and the day after a bath!--and when I just happened to be right there, watching.) Angels?---(well, they made themselves known again, nearly twenty years later with him. Yes, indeed.)
A couple more surgeries - including strabismus (muscle) along the way. Eye drops, contact lens changes, patching.... it was all a constant effort.
One day (when Michael was about four) he was riding his big wheel bike (with the patch on) and ran into a smaller child. A relative of that child yelled at my son, demanding “why did you do that!” I just wanted to scream, “because he can’t see, damn it!” Michael would beg for me not to put that patch on. It became so emotionally difficult that I started to let days go by without using that awful phrase, "patch time." Of course, when my strength fell short, and the patch was left on the shelf, the guilt set in. It was a no win situation for my emotional health (which was already reduced because I was still eating gluten.)
At five years of age, back to surgery where we were then told to stop patching and to stop using the contact lens; it was no longer helping. The retina in that eye had started to fold and all our efforts were over. So this was it. All those hours of patching, all those tears, all that hope. And this was it. I mourned almost as if there was a death.
But could I change things? No. Unfortunately it was no longer something I could even fight for. He was now happy; no more patch. I have to believe there was some reason for all this. Who knows what research will bring. He’s had vision in that eye. The connection was made. Maybe this will prove important to some future surgery. But since he turned five, he's had very minimal vision out of that eye. Very minimal.
And I can't help to wonder sometimes if this was all due to the fact that I was undernourished while I was pregnant with him. I wonder, but I will never know. Maybe it had nothing to do with it.... But if it did, it could have been so avoidable. And it makes me wonder how many unborn babies are affected by needlessly undernourished moms due to un-diagnosed celiac.
* Special Note *
But now, as I read that post above (and cry with some things I connect to what we went through five years ago) I wonder how all we went through with his eye (and brain connections) back then, may have impacted his recovery. You see, he suffered a traumatic brain injury in that accident (a severe TBI). Our brains are amazing and so extremely complex. Who knows, maybe parts that were strengthened due to monocular vision aided in his amazing recovery. Another something-something we will never know. But that's not necessary. All I know (and all that matters) is that we are so very blessed with what IS.
(This photo is of Michael and I three years after that horrible accident. Yes, I am one very happy mom!)
As part of my own recovery after my son's healing from that accident, (as someone who likes to write), I had a need to put those weeks and months all down on paper. Yes, it was very therapeutic. The result is, The Syrup Maze: An Inspirational Journey Through Recovery From a Traumatic Brain Injury. Included are the struggles we faced with gluten free for Michael in the hospital and in rehab. Change is so greatly needed!