PARTING THOUGHTS
June 2019

Looking back, I believe I created Since Joel so that I could capture his story by writing him into my head and my heart. I had an awful dream right after he died where he was swirling away from me, sucked and spun through an old sci-fi-movie-type vortex. A friend told me it represented his soul leaving earth and flying up to heaven. To me it just meant he was going to be out of reach forever. In an effort to “keep” him, I began to write down as much about Joel as I could remember so I would be able to read about and recall him as time passed into a future without him.

I have been privileged and challenged by motherhood. Courtesy of Jonathan’s “normal” development and Joel’s exceptionalities, I have lived both sides of the parental coin; and each of my sons has taught me much of what I know. With Joel gone, I am left with a hard-earned, but perhaps useful, perspective that comes from having raised and lost a child with special needs.

The notion of highlighting any specific “lessons learned” never sat well with me because if I am so smart, why is my kid dead? After all, who am I to offer advice? On the other hand, regardless of our outcome, I have decided that if any of what I learned might be helpful to others, I am humbled to share some of that.

Here, for whatever they might be worth, are some things that are true for me:

Information is only information until it is pieced together and kneaded into knowledge.

Knowledge is only knowledge until it gets some of that secret sauce called experience—and then it can turn into wisdom.

Fair rarely means equal, but both should always be based on mutual respect.

A good, deep (but time-limited) wallow in self-
pity is not a sign of weakness, but rather an acknowledgment of reality.

Denial is more than just a river in Egypt. It pays to name the issue, stare it down, and be reminded that the complaint department is almost always closed for lunch.

On that note, it is better to use energy to make stupid people look smart than to complain about their stupidity.

Since “how things are presented is how they are received,” be mindful of where your words will land before you let them fly. Regretful about my swearing episode with our pediatrician, I learned to ask myself, “Who will thank you for this?” before I opened my mouth.

Collecting allies is just as easy as making enemies; so try engaging with positive partners along the path. Better to be viewed as an advocate who is an ally than to be seen as an oppositional solution seeker.

There is nothing funny about having a child with special needs. Yet very few challenges require a better sense of humor. Here is where it turns out that irony can be as much a friend as an enemy.

As exhausting as it may be, where there is life, there is hope. As exhausting as it can be, where there has been death there can also be hope.