Saturday, February 18, 2012


Dayenu- it means 'it's enough'. It was enough, it'll be enough. Enough.  It gets thrown around during Passover or in Jewish grandmother imitations. It gets said with a shrug of the shoulders or a palms up gesture.

I've lived the not-Dayenu life a lot more than I've lived Dayenu but recently I'm feeling Dayenu quite deeply.

But first some catch up:
Simon had his regular cardiology visit last Wednesday. It had been 4 months since his last and included 3 med changes (dropping 2 and cutting one by a third). It required some weight gain, and generally was a little more weighted than a visit had been in years. We arrived a little early and were spending some time with our old friend the puffer fish when we're called in for our echocardiogram. It's a new tech and Simon does splendidly even helping move the wand around at one point to get even better pictures of his heart. We are making friends in the waiting room and charming old friends that know us so well. All in all a typical visit (that of course I have been stressing about for weeks).

Captain HunkyPants, I mean Dr Rosenfeld, only keep us waiting a few minutes before meeting us and strides in with his usual greeting of "he looks great." Only this time it's followed by "so, his numbers are really different than last time....".

"I looked at the Echo and his heart looks the same but his numbers are really different."
Me- "Do you want to tell me what they are?"

I am mentally packing the hospital bag in my head, thinking of who to call and in what order.

"I'm going to just go look again."
He doesn't even want to tell me the #'s and walks out. 
It's almost like the first time we heard the diagnosis. Almost.
We've been so stable for so long.....what the fuck is going on? I know how possible this is, I know it can happen. I know that numbers and echos can change long before there are symptoms....i know way too much about all the possibilities.

Longest 5 minutes ever.

"I think the echo tech wrote the numbers down wrong. I did a recheck and the computer even gave me new #'s that matched what I thought. His ejection and shortening fraction is are the same as last time. EF is 50 and SF is 28. I think they were 55 and 29 last time so that it could just be reader error and his heart looks the same so we're in a great place given that we decreased his meds last time and he's holding steady."

No blood draw. No changes. No problem. Except for the few minutes of feeling my world turn upside again, and then be righted, it was a simple and sweet cardiology visit. We don't go back for another 6 months! (which by the way will put us back on August 1st, the 4th anniversary of Simon's diagnosis- sounds more like a party than a visit to me!)

The week ended on a high note with Simon eating a full ounce of food by mouth (Trader Joe's Tomato Red Pepper Soup!) and a return to sleeping through the night after almost 6 weeks of transitions, rough nights, and stomach/chest infections.

Whew. I think I took a breath! 

Then, about a week ago. Something changed. Simon learned and has begun to own 'I don't want it!'
It's a combination of words sure and for many toddlers/pre-schoolers, it's a way of life.

Their little selves are developing so fast and they are taking in and understanding so many new and exciting things that often, they themselves can't keep up with it. In Simon's case, it's so clear that he is understanding and wanting so much more than he can express, and it's frustrating the hell outta him.

I do not use that euphemism lightly. It is like my child has turned from a sweet easy going kid to Satan's spawn. He's like a demon child but with a feeding tube and gross and fine motor delays not to mention pragmatic language concerns and that dang heart condition.

So while I appreciate the low muscle tone when it comes to him lashing out and trying to swat me as I attach or disconnect his feeding tube, I am heartbroken over the lack of understanding that seems to be present around not hitting, cleaning up, moving from point A to point B, and generally not getting to sit and watch TV whenever one wants to (him not me- although I'd love to catch up on Top Chef someday).  I think about all the other parents going through this and still....I feel so sorry for myself for all the other work that us 'parenting plus' parents have to put in. Really, it's a pity party over here.

And then I remember. Dayenu.

And it's not a theoretical Dayenu. It's real, just next door, with names and faces attached to it.
Dayenu that Simon is moving, however painfully, through this typical developmental stage.
Dayenu that he's cleared to go to school to see and be around other kids. 
Dayenu that he can string those 4 words together.
Dayenu that we all share a bedroom so that he can climb from his bed into ours for 1:30am snuggling (and that it's not us sharing a hospital room together.)
Dayenu, that his medications are administered through his g-tube and not a central intravenous line.
Dayenu that we've had the last 3 years and 3 months not wondering if we need to head back down to Stanford for another heart transplant consult.
Dayenu that Jaime and I can still find love for each other in this time of parenting plus
Dayenu that we are moving from his braces to simple orthotics. Yes he will wear high top sneakers with his dress suit at the Passover  Seder, but he will rock that look and no doubt trends will be set.
Dayenu that he took 5 bites of food at lunch. Dayenu that those bites are the size of one spaghetti O or a grain of rice- they ARE being chewed and swallowed.

I could keep going on but the reality is that it's still hard. When Simon is done eating and throws his food across the room, it's not the same as your typical food throwing pre-schooler. There's the food that I've carefully chosen and prepared for him/us to eat during a therapeutic meal, there's the food that I've prepared for him that I know he'll enjoy playing with, there's the food that I know is appropriate for him to be able to chew and swallow (that he may not like as much as the chicken bone slathered in bbq sauce), and then there's the blended organic whole foods that I have carefully measured out in terms of volume to calories that I have the benefit of pushing through his G-tube and not worrying if he likes the texture and flavor of but is a bitch and a half to monitor (and smells so foul when it gets brought back up.)  So when that tiny little handful of mac and cheese goes flying and the low toned arm lashes out to hit my face, it hits the frustration button a little harder than it might for most.
Dayenu that he is expressing himself right? .............right?
I know it is. I pray/ know it's just a phase and an essential one at that. I do my best to take a deep breath and tell him over and over, time and time again that it's not ok to hit. I don't like it. It hurts me ( I don't go in to the emotional pain versus the physical pain, that will be for when he's 4- besides I don't want him to get a complex about his low muscle tone- that's for when he's 4 too).

Still, it sucks. It hurts so much more than I can express when we're sitting watching TV and I have to turn it off because the tube feeding is done and it's time to get to the dr/therapy/special Ed class and I get a tantrum that brings on a barf..
When we're sitting down for our therapeutic meal and I have actually chosen everything that has been asked for and don't even get to the table before hearing "I'm done" and pushes himself back from the table, swatting at my hands while I'm not fighting him but simply trying to unbuckle him from the high chair so that he doesn't get his feeding tube  pulled when he gets down...
 When we're walking down the street, he wants to stop for something, can't express it in words, and simply throws my hand away/pushes me aside/ says "I don't want you Mommy"....
I breathe it in. Try to separate the smoke from ash, work on not letting it burn and figure out the next step in getting to Trader Joe's to pick up more snack foods for the child.

It's what we do, we moms and dads and aunts and uncles and grandmas and grandpas and all other form of caregivers to little ones. For those of us with Littles that have that 'little' something else going on, those of us that wait months and years to hear our names spoken, take that first walk, enjoy that first shared's just that much harder.

I have wished and prayed and cried for Simon to have 'normal'. All I want for him is to get to go through life with the same chances and choices that anyone else might.

Is it so much to ask to have that happen without him ever questioning anything I say to or ask of him. I don't think so. Dayenu.................right?

A boy and his dog

A boy and his GG

A boy and his new bike trailer

A boy and his band

A boy and his extended family

 A boy, his Mama, and some tall trees

A boy and his new friends

A boy sleeping

So grateful for this boy

1 comment:

Sue Peterson said...

Loved this post. :) Thanks so much for sharing your life, loves and experiences. Glad to hear that Simon is doing well heart-wise and wishing and hoping things get better attitudinally (don't all parents of 3 year olds wish/hope that?) and developmentally. Your family will always be in my heart and thoughts!