Friday, December 2, 2011

Talk To Me Now

Simon talks a lot. He can finish the sentences in dozens of books. He knows most colors and can correctly identify a hexagon. He can count. He requests different songs from a 50+ play list. He knows a lot of things.


We sit down this afternoon for our Mid-day meal. It's our regular therapeutic meal and usually the one time a day when I can count on Simon to sit and play with food for at least 10-15 minutes. He's just come home from his Special Day Class and almost always is hungry, asking for different things to 'eat'.  I have his chicken nuggets, a mini, taco, some spicy ketchup, and of course his beloved gherkins and soy sauce, all ready to go. Each of these items have been specifically named and requested by him. We have juice and straws ready to go.

He climbs into his chair all by himself and I am expecting another food play session  just like any other. I strap him in, push his chair close to the table and walk the 10 feet into the kitchen to get his pump and food bag.
Less than 15 seconds later I return to the table and hear "I'm finished. I'm done."
It's not the first time that he's done that; gotten settled only to immediately be done.
It's a little unusual at this time of day especially after asking for such specific and historically favorite treats.
Again "I'm fiiiiiiiineeeeeeshed. I'm doooooooooone."

Of course the feeding therapist in me kicks in and knows that we 'have' to at least get a few bites/licks/swallows in before we leave the table.
I begin the cajoling and bargaining that are also as familiar as the chicken nuggets and gherkins at the table.

I am surprised at how quickly he is moved to tears and begins what seems like truly anguished cries.

I take internal inventory and wonder just how much I should push it.

It's really more like a split second conversation that goes on in my head during which time I am watching my son turn red in the face with tears streaming down and of course come to the realization that it's not worth it.

So I begin the ending-the-table-time ritual of simply kissing or licking our food goodbye. It's something that we always try to do and are usually successful at ending our meal on a high note regardless of how many bites or licks or swallows remain at the table.

Nope. The boy is now almost in hysterics, crying out, pleading with me to me done and we are less than 90 seconds into what is usually a 15 minute lovely food play time. What is going on? I am torn between frustration (another meal opportunity down the drain) and heartbreak at watching my son be so distressed.

And then I see it.
I look down and notice that Simon's right thumb is caught in one of the plastic clip loops on his high chair. It's twisted and red from being pulled at and only caught tighter.

I help him disengage his thumb from the vise and hold him while he cries into my shoulder.

His fucking thumb was caught and hurting him like the dickens.

And he can't tell me because he doesn't have that piece of expressive language. He can't even say "Ow" or "my thumb".

His thumb is red and throbbing and my heart is hurting.

I know years from now I will laugh at how there once was a time when....
Just like I laugh now at the time when we had this boy that didn't say more than two words (Hi and Fish) and look at how he doesn't stop talking for more than two minutes.


He has a significant language delay. I'm not asking that he say "Um, Mom, my thumb is stuck in this buckle and I can't get it out and the way that I've tried has made it even more stuck. So now it really hurts and if you could help me, that would be great. In addition, Mom, I think that this experience has thrown me enough that I'd really like to take a break before working on my eating so if you could just pause the pump feed, that would be spectacular."

No, I'd just like a simple "help me" or "owwww" or "my thumb". Just 'thumb' and/or 'help' would do.

Aaaaaaaaaaaaaaaaaaaaaaaaaaaaagh. For the boy that has a heart condition with so many possible symptoms, language is key. How he is feeling and able to communicate that is key.
Key. Doesn't even begin to touch how important it feels to know what Simon is feeling. Essential. Core. Necessary. Salient.

I think any parent would relate. Especially during that amazing toddler/pre-school time when they clearly have more thoughts and feelings than they have words for. (I hear for some people this goes on for decades).

When you have a child that has language/developmental/medical concerns this divide is so much harder.

I remember when Simon didn't really talk but had Mama down. It was amazing to watch him get it. I was so excited for him to be able to name Jaime and have her get that feedback. I waited for months before I got my 'Mommy'. The wait was excruciating.

This wait is excruciating. This wait for any sense of pragmatic and expressive language.


Especially when it involves twisted almost broken digits.
And what I try not to do is go to that heart place. That next level down where it's not just about a thumb caught in a buckle. Where it's a chest pain, or fatigue not just based on a lack of nap. Where it's nausea or shortness of breath that feels different than too much tube feeding all at once or trying to run too fast or hard. Where it's a sweat but not from warm weather or having too many clothes on.

I try not to go there.

Some days I'm more successful than others.

And I just want the kid to say "Help me Mommy" or just "ouch".

And I'll be there.

In a heartbeat.

Tuesday, November 29, 2011

Walking Between the Raindrops

It comes from an old story about a Rabbi who made a group of witches believe that he could walk between the raindrops. He somehow convinces them that they can too and leads them out into the rain where of course they all die from exposure to that life giving force of nature. I'll leave you all to the expounding on the patriarchal and misogynistic themes in the story (that you haven't read) and instead tell you how I feel like I walk in between the raindrops sometimes.

Thanksgiving is over. The family (mine) has come and gone. Gatherings, caravaning leftover meals, swimming, and brunching has all happened with nary a fatality. I love my family. Loved seeing them. Wish we all lived closer and could see each other regularly.

Still, I am glad at this moment to sit quietly in my home, Simon napping, and only have the curled up tiger stripes of my dog to look at.

I am the parent of a child with special needs. My son is tube fed and has developmental delays. He takes syringes full of medications three times a day and while he's not short on personality or love in any way, he lives with a condition that may or may not limit his growth, his choices, and ultimately is life- it's that kind of condition.

It's almost invisible depending on the time of day. And blessed be for that. He's thriving. He's working on running and building up his stamina. He's hysterical. I mean really funny.

 (his newest phrase when he's heading to tantrumville is "I don't want to be upset." Which is huge in that it's a complete sentence, an 'I' statement, and is expressive. The hysterical piece is that he says it usually one step into crying or having a fit and seems to be talking mostly to himself in that he wants to make another choice in the moment but can't figure out what it is- such a thinker my little mensch is)

My challenge right now is walking between the raindrops. It's raining during parenting a lot. Sometimes it feels like it never lets up really. Gotta grow this kid. For sure there are moments of sunlight, we all need our vitamin D but for me and Simon it's been a lot of getting through the showers (meaning hospital stays, medications, appointments, assessments, milestones, etc). It feels like we're always trying to get to the next thing. The next weigh in. The next age appropriate thing. The next therapist/therapy.

I want to just let him be a boy growing.

This holiday time, hanging out with cousins, aunts, uncles, friends, I felt like I mostly got to let him do that. Simon got to go and hang with the older cousins. He got to see and play with his younger ones. He got to move in and out of rooms with family members all happy to see him and give him a hug. He got to have a door shut in his face when only girl children over 5 wanted some privacy (it's important he get that too).

It was a thanksgiving weekend that was so familiar and stereotypical- would be to almost anybody- except for all the gay people :-) that when it comes time for medications or tube feedings or seeing the developmental delays in contrast to other children....I don't know what.

Those are 'normal' things for us, for our family- even the extended. Simon's five and a half year old cousin doesn't even ask anymore when we attach his feeding tube to him. There's no question about what that plastic button coming out of his belly is when we all get into our bathing suits for some hotel swimming. It's amazing. Still, I feel it. I feel the distance between me and my sister as she's getting ready to sit Charlie down in the high chair and fret over what he'll eat since he's so out of sorts from the travel and new spaces. I feel it when Simon is so excited to sit at the children's table during the Thanksgiving day meal but I am barely fitting in the space behind him holding his pump bag so that we can pair food play with a tube feeding.

It's not a painful feeling. It's not that traumatic even. It's a 'normal' thing for me in a world where that's not quite normal. But it's my family too and lord knows we've had our share of working out what's normal.

So what is's not easy to describe. I think it might be like finding out that I was adopted much later in life but you've still had the amazing growing up experience that you had only now there's this new thing that you know about yourself that sets you just one degree apart from the family that you've loved and felt so close to for decades. I'm not adopted no matter how badly my sister wanted me to be at one point- so she could send me back.

I'm not sure about that metaphor or even if I believe what I just wrote....not sure.

I am glad to get back to a simpler schedule. I am glad that Simon just loved loved loved having so many of his 'people' around. I am glad for my wife's chipotle cranberry sauce and her putting up with so many leftover containers in the fridge. I am glad for another Thanksgiving out of the hospital and not even thinking about whether or not Simon should be at the gathering with 21 people and all their germs. I am glad for so many people that love my little guy and how he loves them back. I am glad for my parents, my sister and her family, and all the incredible love and support that my little triad have gotten from them for so so long. I am glad for Jaime's family and our extended and chosen family that have meshed so beautifully that Thanksgiving is just another excuse to get it together and feel the love.

More holiday mishegas coming up for sure. More walking in between the raindrops. More life. More paying it forward. More schisms. More living with and thriving through. Just more more more.

Happy Thanksgiving to you.

A family that Brussels Sprout Stalks together, stays together

Cousin Love

Maya and Simon swing series

Showin' off the Mic-Key (but look at that 6 pack!)

Where my ladies at?

There you are!

Post pig-out puppy pile

Turkey bone!!

Reading with MM and PopPop