Who I Want to Be Versus Who I Am

In which I share the milestone of being a guest for the first time in ages, that I'm struggling badly, how I enjoyed getting my hands in the dirt, and miscellaneous highlights.

Milestone: Being Guests

We enjoyed a lovely dinner at someone's home last weekend and I'm almost certain that it was the first dinner invitation that we have accepted elsewhere since Thomas's discharge home nearly six months ago. We have hosted plenty of families, but from the safety of our home "nest." If Thomas were to need any of his special foods or have a hard time physically, I'd have all my resources at my disposal. Going elsewhere felt (and still feels) nerve-wracking for this mom. (Thomas is happy and clueless.)

In a humorous turn of events, I forgot to pack snacks for Thomas for said dinner outing. See, his hungry strikes anytime anywhere and he must eat right then. With a gastrectomy, there is no waiting and certainly no starving him out till the next mealtime. Therefore, I pack snacks always. I swear, I'd pack snacks for a 15-minute errand with Thomas in tow. And here, I was giving myself such pep talks that "it's going to be okay" and "we're going for dinner, Thomas will be fed," that I actually forgot entirely to pack snacks . . . for the one-hour drive each way and for the two hours of playing in advance of the meal being served. What a dorky mama! Thomas was very hungry on the drive and we pulled over to try to buy him food.

Evolution of a Special Needs Mom

In a sense, we live a public life, but there is so much left private. 

Because Thomas's older siblings are old enough to have private lives, I have purposefully kept quiet this entire year about their own trauma, behaviors, difficulties, and changes. Trust me that medical trauma is hugely impactful on siblings.

I don't share about my husband's experience.

And if I share about me, it seems like "this is all about me," when it's primarily about Thomas and we are all supporting actors.

Some special needs parents find out their new role prenatally, some at the baby's birth, some as a condition develops and is diagnosed, and some at time of sudden accident or tragedy. We are in that last category and I don't know when I will arrive "there" to be comfortable, confident, and competent as a special needs parent. 

Nine months post-gastrectomy (and let's not forget the other three organs he lost and the post-cancer care!), I find that the more we and the team learn about his condition, the more complex it really is and the more overwhelmed and scared that I am. There is much medically I don't share publicly (but I'm always willing to talk a person's ear off privately . . . until I realize the awkward moment that he or she really just expected an answer of, "We're fine, how about you?!").

The truth is that I can't "do it all," but I really want to be able to do it all, and I'm sad, angry, and depressed that I'm failing. Yes, I'm well organized; yes, I've simplified our life in innumerable ways; yes, the older kids work a lot around the home; yes, I hire help; and yes, I get professional help.

The perceived purpose of a Mama is to keep her babies safe, healthy, loved, and free of suffering. "Oh, you have such happy, healthy children . . . you're a good mother!" I think I will be in a better place and will be living more in reality when I truly embrace the fact that I cannot keep my most precious children--even a darling 6-year-old child--safe, or beyond the omnipresent shadow of serious risk, or free of suffering. I want to be God, but maybe all I can do is be Simon of Cyrene.

Plant Therapy

A dear friend and fellow plant-lover gave us three new plants! We are now caring for two new succulents plus our first bonsai tree. I put the succulents and Thomas's new sibling rocks on my sink windowsill, plus I transplanted my Christmas cactus and jade to flank the bonsai. While at the nursery hunting pots, I nabbed up from the clearance table two Epilobium canum Orange Carpet, which my little laborers helped me plant outdoors.

Miscellaneous Moments

I asked my 8-year-old to distribute toilet paper rolls throughout the bathrooms and later found them all in architectural towers instead of being put into the cupboards. Someday I will look fondly at this, but right now it just seems like more work for mama.

We have found a large bullfrog and two smaller frogs, all in one week.

Each of my kids has gone through the discovery of Shakespeare, which I have strewn throughout the library in the form of various volumes of high-quality children's versions of Shakespeare (but avoiding pablum). Now it is #4 child's turn, who has discovered said books and resisted coming to breakfast and later starting school because he was enraptured by Macbeth. And thus the obsession with Shakespeare begins . . . .

The first grade assignment of "discussing Noah's Ark with Mama" means having fun with our toy animal collection!

Over and out!