Behind starburst eyes

I read the poem “Welcome to Holland” by Emily Perl Kingsley again this evening and no matter how often I’ve read it, I can’t get over being offended by the overall tone and especially this part of it:

“And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.”

It offends me because the entire tone of it (to me at least) is that having a special needs child is a tragedy. Something to mourn and cry about, NOT because your worried about how the rest of the world will treat your child, NOT because your sad for your child’s sake at certain things they may not be able to do and you worry that they will hurt emotionally because of not being able to do whatever it is that they cannot.

If the tone had been more about the strength needed to help your child as they go through countless trials and tribulations I would not be upset at all, as I do understand that neuro-typical or special needs, it rips at one’s heart worse than a rusty knife to watch your child hurt.

No instead the tone I get is “Poor me, I wanted a trophy to show off, to brag about and I am too close-minded and or shallow to see just how lucky I am to have been blessed with the momentous honor of guiding this individual into adulthood and watching as I help them to flourish as the person they were meant to become.”

I understand that the poem does try to say that eventually you will see that Holland has lovely things of it’s own and that it’s not all bad that your there while everyone else is in Italy:

“But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.”

I feel that if you honestly believed that it was simply just a different place than you would not carry around a significant loss and it’s accompanying pain for the rest of your life as the poem states.

For the last almost 8 years (or 6 if your counting from when I first realized he wasn’t neuro-typical) have I grieved and said “Yes that’s where I was supposed to go. That’s what I had planned.” Has the pain of that been with me all of these years because I’ve suffered a significant loss because parenting C is “different from parenting a child without special needs”? The answer is emphatically “NO!”

Neither of my boys is a doll for me to manipulate into being “just so” and then parade around bragging about and acting as if their achievements were all because of me, or even worse my own through some unhealthy by-proxy mindset. I accept that a lot of what a child is like is based on their environment which of course includes my influence quite heavily at this stage of their lives. However, I also acknowledge that they are their own unique individuals and that no matter what they will chose to be who they are meant to be in the end.

They are amazing incredible human beings and I cherish every moment with them. I have not, do not, and will not feel as if I’ve lost a dream just because they are not a carbon copy of some societal ideal of who they should be. No child should have to deal with their own parents secretly (or Gods forbid not secretly) mourning at the loss of some supposed perfect ideal of who they should be. For neuro-typical or not each person is unique and should be honored for the person they are, and what they contribute to the world by being themselves.

So no, I do not carry around a huge disappointment in my heart, instead I rejoice in allowing all of my children to be exactly who they are. I understand that happy isn’t found in some cookie cutter recipe of life. Being married with 2.5 kids, a 9-5 job, and a mortgage is not the secret list one must go by to obtain happiness. There are actually a myriad of ways, paths, and choices that can contribute to a happy, personally satisfying life, and each person’s version of a “happy, personally satisfying life” is anywhere from slightly different to vastly different from someone else’s. But that in part is what is so fantastic about our current day and age. We CAN choose different lifestyles! We can choose to have children biologically, through adoption, surrogacy, fostering, or not at all. We can choose to work in countless types of jobs or careers, in numerous fields in all different types of environments with different levels of responsibilities. We can choose how much or how little “formal education” we attend. We can live in a house with a mortgage, or an apartment, a condo, an RV, a houseboat, or out of a tent as we back back across a country. And those are just some of the choices we get to chose nowadays.

So yes, unequivocally yes I would have had each of my children exactly as they are had I of known ahead of time how my life with them was going to play out. I don’t regret having them, and I don’t mourn the fact that they are not neurotypical. I know they are capable of having happy, personally satisfying lives and that is ALL any parent should want for their children no matter what their personal version of “happy” looks like.