We all encourage our children to be different in some way, not to follow the crowd but be THEMSELVES. If Max jumped off a bridge, should you do it? If Rosa cuts HER bangs in class, should you do it? NO, you are your own person. We have this emphasis on self and independence and on confidence in differences that make us who we are. It’s all good. Until your child is truly different. Then…it is heartbreaking.

Shawn Joaquin was recently diagnosed with something that will affect him his entire life. It will perhaps make him stronger as he fights to overcome it. It may someday, possibly, be a gift in that way. But in the interim, astute children will see it and comment on it. Weak-minded bullies will sense it and use this perceived weakness as a way to taunt him. My tenderhearted boy is going to have to develop more than confidence; a carapace may have to develop to get him through the coming years and even into adulthood.

I cringe when I get emails from my new Yahoo group with postings like “how to explain your child’s disability”, “your disabled child can…”, “alternatives to public school for disabled children”. I now understand the battle of many to remove the word “handicapped” from the general vernacular. Of those with paraplegia fighting against being called paraplegics. Those words are limiting, placing people into little buckets as if that single word describes who they are versus one of the many challenges they and we all face. I am not ready to apply any label to my son.

I had thought that with the general cluelessness of children under 8 and Shawn Joaquin’s own innocence and naiveté that we would not need to deal with any of this for some time. We have not talked to him about what’s happening, nor has he asked – he is simply grateful for his extra time with me as we go to various appointments every week. He loves the tradition of bagels with cream cheese before one appointment, snacks in the hospital cafeteria before another, and the simple joy of singing along to XMKids in the car with his mama. We have lived in this bubble for some time, and I had hoped to keep it going. But in the last weeks of kindergarten he came home discouraged and hurt by the taunts of two of his “friends” whom I suspect will someday be in the bully camp. Then yesterday his inability to keep up at camp in the various games – capture the flag, Frisbee football and other games we all played as children — had him feeling frustrated and in tears. And my heart broke just a little as I realized that not only did I need to talk to the counselors about how to help him, I had to talk to him about his differences. And somehow convince him that his differences make him special, not handicapped, disabled or otherwise boxed in. Though what I want to do is wrap my arms around him and shelter him from any cruelty or unkindness from any corner, to keep him safe and protected until the day I die.

As is apparent from this posting, I am unable even now to put a label on Shawn Joaquin, to describe what is happening with him — I am not ready for anyone to put limits on him or to discuss his challenges in the school parking lot at pick up. And perhaps I want to preserve my own innocence and naiveté that will surely be damaged when I learn that someone in my circle is not as compassionate or supportive as I had hoped or expected. So for now I too will enjoy the bagels and the snacks and the singing, until I can come up with the right vocabulary to talk to Shawn Joaquin and those I depend on to guide him daily in his life – teachers, counselors and others intimately involved in our life now. And hope that they too can see past any label and see only my beautiful, smart, creative son — and all that he is capable of now and in his lifetime.

Who wants a monkey baby?

Recently, Shawn Joaquin and I watched a documentary entitled "My Monkey Baby" on TLC. It focuses on individuals and couples who have adopted small monkeys and believe they are like human children - they are cosseted, diapered, dressed in smocked tops and Hawaiian shirts...whatever best expresses the personality of their parents. Both Shawn Joaquin and I were fascinated by this, and I just felt a little sad for people who had a void that could only be filled by a wrinkly-faced monkey who would be dependent on them for their entire lives.  I was also a little creeped out. Then I thought about how I had always wanted a monkey as a child - I had read a book about a family who had a monkey, and it was obvious to me (at seven) that they were THE LUCKIEST FAMILY IN THE WHOLE WORLD.

Imagine. A monkey to hug you every morning. To fetch your cereal. To watch Mutual of Omaha's Animal Kingdom with you every Sunday night, albeit with a starkly different viewpoint. To defend you from your annoying little brother, perhaps even taking the blame for mysterious bruises or broken toys and lost books. After sugar cereal, this was high on my list of dreams.

When I shared this long-dead dream with Gregg, his immediate response was a sputtered "Don't tell me this! I don't want to know this about you! No! No!" And thus began the Great Monkey Debate. Shawn Joaquin, Madelena and I feel that wanting a monkey is normal, and in fact a developmental milestone.  Yes, we all let it go for other things like bikes, horses and our first tattoo....but surely, every normal child yearns for a monkey to call his own, to look at him with limpid eyes before leaping up to swing on the dining room chandelier.  Shawn Joaquin thought a monkey might make his bed for him, and he could be named Luke. Madelena was thrilled with the idea of a monkey as a permanent audience member, finally giving her the applause she so desperately seeks every waking minute. Gregg, on the other hand, felt like it's the first step down a path that ends with 50 cats, feces in the living room, and 24/7 watching of Animal Planet and a particular focus on "Pets Do The Darndest Things".

Now I feel the need to justify my monkey lust, even though it's far behind me. Please take a moment to answer my poll and confirm the importance of monkey dreams as a child. Without dreams like this, children are just short adults waiting for an opportunity to file their first tax returns.

When you were a child, did you want to have a monkey to call your own?

Hell yes!My younger sibling was my monkeyNo. I'm getting creeped out just reading this.

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