Dealing with “Different”

018bI don’t know of any mother who looks upon her children as less than a blessing. After we give birth, we talk about weights and lengths and APGAR scores like they qualify as Ivy League admission. As they grow, we mark each milestone, compare and contrast their skills with our friends’ children, nurture their talents and expect great things for them.

So, what happens when the child we wished for turns out to be very different from what we expected? When the child is “different” or disabled or delayed? How do we reconcile our feelings? Because, let’s be honest, all of us had at least a moment of feeling disappointed or angry or hurt or dismayed. I’m not saying we don’t love our children fiercely. I’m saying that, because we’re human, it’s natural and understandable to feel negative emotions at the realization that our child isn’t the way we expected. It’s a natural, normal response and one that we have to work through.

Back when my youngest son, Henry, was born, we were not aware of his Down Syndrome. In fact, he was two weeks old before we got the diagnosis. To say it was a shock would be like saying the Grand Canyon is a hole in the ground. Soon after, I wrote about it. I never wanted to forget it, so I wrote it down. Let me share it with you:

What a shock. It was so devastating to hear that he would never be “normal”. Two weeks of complete ignorance – just thinking he was little & needed to eat – completely unaware of what was hiding around the corner.

I remember standing alone in that doctor’s office as the doctor was finally able to examine him after the jaundice had cleared up. I watched him turn, lift, pull, move, poke, prod Henry all over & then just out of the blue said, “Has it crossed you mind that Henry has Down Syndrome?” Before it even registered, I said, “That’s funny you should say that because I thought that in passing when I was looking at him one day, but that’s all it was…just passing.”

That’s all I remember. A dull roar started filling my ears & all of my insides started roiling. It slowly, very slowly, started creeping into my consciousness and everything around me started crumbling. I don’t remember anything else that was said, just the voice inside trying to keep the tears at bay because I didn’t want the doctor to think I was a bad mother for being sad about it.

Then I had to go out & tell my mom who was with Steven in the waiting room. The noise she made will never leave me. It was raw & guttural – animal-like. A wounded moan. The weight of this was more than I could comprehend. It would be weeks before I understood. Weeks of testing, reading, researching, doctor’s appointments and crushed dreams. Accepting that the dreams you’ve had for your child will never come true is gut-wrenching. Henry will never be president. Henry won’t be a doctor. Henry may not go to college. Henry may never live on his own. Henry won’t have children. Henry won’t do a lot of things. That’s hard to accept. The fact that he’ll most likely need us to care for him for the rest of his life – that’s hard. But I’m thankful. Thankful that he’s with us. As hard as it’s going to be, I wouldn’t give him back. But it’s going to be a rough road. Your existence has redefined true north for us. I guess it’s our journey to find it again. With you as our compass.

Did you notice, right in the middle, the part where I said I was afraid to cry? Because I didn’t want the doctor to think I was a bad mother because I was sad? As mothers, we deal with that feeling a lot. Like we shouldn’t ever feel disappointment, dismay, anger, frustration or flat out rage. I’m here to say that’s simply untrue. We shouldn’t STAY in those feelings. But having them is part of how we’re made. To ignore them, push them down and pretend is to deny our very humanness. Yes, we MUST work through them and come through the other side. We mustn’t wallow in self-pity or reject our child because he or she isn’t what we prayed for. But we must allow ourselves to feel the feelings we have – and then let them go.

For me, it was very important to get those feelings out in writing. For others, it might be venting to a close, close friend or family member. However you do it, I encourage you to do it. Putting a voice to those feelings doesn’t make you less of a mom or less of a good person. Yes, it’s 100% correct that ALL children – no matter what – are a gift. A reward. A blessing. But, like anything else in life, sometimes we have to trudge through the desert in order to reach the sparkling refreshment of the oasis.