1 Corinthians 10:13

I wrote this last night, and then deleted it, deciding it was too personal for the blog. At prompting from Michael, however, I reconsidered. Please remember that it was written late at night, a culmination of every fear and thought pressing on a mother's heart--I am sincerely sorry if I offend anyone. --Andie

--“No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it”--1 Corinthians 10:13 (New International Version)

Maybe I am completely misusing that verse to suit my purpose and point here; who knows--I will ask Michael when he wakes up in the morning. As it is, it is nearing midnight and I am completely unable to sleep. Blame pregnancy, hormones, stress, or Mike's fajita dinner that left me with wretched heartburn, but I am skulking about the Internet for something to do.

I have been feeling rather helpless lately.

Before, when we were meeting with all the specialists and everything, I felt like we were getting things done, ruling things out, moving forward. When we were handed the diagnosis and told to keep doing what we had been doing...it felt like everything kind of halted, hesitated. I don't know what I had been expecting, but hearing that there really wasn't that much more that we could do other than continuing as we have been for the last year...it was a little frustrating. Getting in there and fixing the problem is my general MO, not patiently waiting and leaving it up to God and to fate.

Which admittedly, is what I am logically supposed to do, but how much easier said is that than done?

Many things that have been happening have left me feeling impotent.

In the past, any concerns or even mild discrepancies in behavior, I have unthinkingly brought them to the Early Childhood Intervention specialists that I have gotten to know so well or have called the nurse or doctor to have them give their opinions over the matter. My philosophy has always been that it is better to ask than to stay silent and worry. Now, I suspiciously hoard every tidbit of information, apprehensive of sharing even the most innocuous of details regarding my children.

Why? What am I afraid will happen? That they may look at this information and find another white rabbit for me and Michael to chase? Or that we may be given even more to try, more to work on; another thing that puts us even further from our substandard but oh-so-monumental goal of "normalcy"?

I am more stingy with my children than ever before, too. Though I know the benefits she will have at Head Start, though I know that I have to send her to school eventually and that the time away will be good for me, that she will be just fine...though I can reasonably assert these things, I do not want Emerald to leave me. I want her here where I can see her and hold her and protect her. My paranoia over their safety has increased ten-fold, and I have to fight myself to leave them even for short bursts of time.

Tonight, I tried to join a social forum of mothers that have children with similar diagnoses as my Gabriel. (I balk at using the word "disability", which seems so vulgar and repugnant to me). I read their stories and listened to their difficulties, hoping to find camaraderie and reassurance, but I rebelled at linking my child with theirs. While their children are beautiful sons and daughters of God, my Gabriel is special, he is something unique...I refuse to allow a single frightening, inoffensive, intangible word define who he is; but that's what it is becoming.

Some days, I manage to forget. Our time melds from one day into the next and we feel like a perfectly average family, content in our lives and making it by. Then without fail, something always happens to bring me back to reality, to revert me into that scared, powerless little girl that doesn’t know where to go next.

Without provocation, at times Gabriel’s face will fall. His gorgeous brown eyes that always make me think of Hersey’s chocolate kisses will fill to the brim with tears, his strawberry lips will turn down at the corners, and he will cry the broken sobs that I will be completely helpless to comfort away. Is this normal child behavior? I will wonder. Before, I would have never had to question it, but now—is it just further proof that my child is different? Or is this a phase all children go through? The little nagging doubts begin—what kind of mother is unable to soothe her own baby?

At other times, Gabriel will laugh. He will start laughing, and the sound fills the room with joy and light and cheeriness…but with it comes a certain darkness I can’t escape. What is he laughing at? Why won’t he stop? His expressive eyes, usually so somber, look slightly crazed, hysterical, and I feel frightened. Is there something wrong with his brain? It is so unfair that a thing so happy and carefree could engender such worry within me.

I hear of other boys, younger than my own Gabe, that are doing new things—talking, laughing, staring lovingly into their parents’ eyes—and once again my defensive mind tries and reason it away. It is impractical to compare your child to theirs, it says. We know that Gabriel is different, and if we start playing that game now, we will never be able to stop. Judge him by him, and be happy with who he is and who he is going to become. But even those are unable to quiet those restless feelings inside me. I want so much to provide every chance in life for my children, and I can’t help but think I have all ready failed Gabe in some way. If I had worked harder, maybe he would have never regressed; if I was better, he would have caught up by now. It must be that I am doing something wrong because at least then I have control over fixing it, making it right.

I had hoped and prayed that I would be above this. I have pushed myself to be okay. Who Gabriel is—a delightful, wonderful, darling little boy that makes me happier than I have any right to be—is a joy to me, and I adore him fully. I wouldn’t trade him for any “typical” boy in the entire world. I have written pages and pages full of text, extolling his many virtues because I can see how great he really, truly is. That’s what I am afraid of sharing—I am afraid that I am going to show this beautiful child to the world, but all they will be able to see is an ugly little word that happens to be a fit, and things will change. That it may warp this perfect thing into something unrecognizable; that my amazing son will be defined by one descriptor and we won’t be able to rise above it. So, I have grown frightened and suspicious of the outside, and I want nothing more to hide us in here forever where nothing can tarnish what we have.

But one thing I know in my heart of hearts…Michael would never allow something like this to own our family, and he would be disappointed and unhappy if I allowed it to. So I will swallow my fears, I will be strong for my son and for my family, and I will defiantly tell the world exactly where they can shove it. But here, tonight, I needed to break a little.

--Andie--