July is like that time I was stuck in an elevator

I'm not a fan of elevators.

Particularly in the summer time, in the older buildings where the ventilation is questionable and the elevators are small . . . there's a little voice inside my head that starts when the doors close, chanting "just-get-there-just-get-there-just-get-there", and a small but undeniable breath of relief when they open again.

Back in the summer of 2005 I was stuck in an elevator for 24 long minutes . . . and during that time I miraculously only had about 20 seconds of panic, simply because more than that wasn't an option.

It was a tiny elevator.  Dave & I were accompanied by a very large middle-aged man, a woman in her late 20s, and a very elderly, frail woman who had only gone downstairs for a moment to pick up her mail.  The (extrememly tiny) elevator started up only to stop midway between the second & third floors.

A high pitched
EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE alarm started screaming.

It was June. It was hot. There was no ventilation.

We were packed in like little standing sardines, literally about an inch between each of us.

All of our eyes were wide and I could feel blood rush to my head and my inner panic voice start with "Nonononowe-have-to-get-out-of-here".

And then the other man totally. lost. his. mind.

He pushed past everyone to the front of the elevator (which made the elevator shake) and started pounding on the door, which made the elevator shake more (scary).  He was screaming (screaming) "GET US OUT! I CAN'T BE IN HERE! GET ME OUT OF HERE! HEEEELLLPPPP!"


And instantly I took the panic rising in me and put it out, like dunking a match in water, because I had lost the luxury of having a meltdown.  I don't think you can have 2 hysterical people in an elevator, and his hysteria clearly trumped mine.  So he got to panic and we focused on convincing him that this wasn't a big deal.  Eventually the NYPD arrived to set us free.  (To this day I ask myself "is this elevator too crowded to spend 20 minutes in" before I make an elevator commitment.) 


Anyway, this July is kind of like that elevator.

For the past 3 days, I've been flailing, feeling an anxiety rising up with every appointment that gets added to the calendar.  Our therapy schedule has totally flipped, as everyone shifted for the summer days . . . this leaves me standing in front of my giant calendar early each morning, rubbing my eyes and mumbling "Wait, what day is it?  And who is coming here when?" Also, since everyone vacations at some point, each therapist has to squeeze in make-up sessions while they're around.

On top of that, we have a crazy number of appointments.  This week included the 4 hr audiology eval and a 1.5 hr functional hearing eval.  Still to come this month are (chronologically): a physiatry eval/revisit, preschool registration, another hearing eval, an opthamologist eval, another hearing eval.  And possibly an ENT follow-up thing.  And there are only 15 business days left this month.  That's a lot of appointments. (Also, because the team that we are working with is fantastic, there are a lot of emails, surveys and inventories that have to be completed before & after appointments. The fax machine has been buzzing with reports and data from the appointments. Papers are piling up.)

I had to buy a travel calendar to carry in the diaper bag because I can't keep it straight.

For the past 2 days my inner voice has fluctuated between " I hate July I hate July I wish that this was done already" to "How will we ever make it through July?" to "One day at a time, one appointment at a time, we will get through this month".  That seemed like progress, but then a flash of realization today . . . am I wishing away a month?  A whole month?

My big goal for this month of my life is just survival? 

That can't be right. 

So I'm putting out that match of anxiety again, as I will not allow myself the luxury of struggling and moping through a month.  I am consciously choosing to pull out my most zen self. 

I will not rush through this month.  There will be sprinklers. 

There will be ice cream. 

(There may also be less lengthy blog ramblings . . . que sera sera.) 

For the therapists, from the mom

It's been over 2 years since we started therapies.  We are lucky to have a spectacular team of therapists who love Maya dearly, and I consider to be surrogate family members.  But we went through a few others before we had our perfect team, and before I forget what the beginning was like, I thought that I should write this stuff down.  So, here are my thoughts for the therapists, from the beginning.


Come on in, stranger.

Welcome to my shambles.

My sweet, beautiful, wonderful child has just been through a series of evaluations specifically designed to figure out exactly where she doesn’t quite measure up. Then I got to read about her shortcomings (quantified . . . lovely. How lucky are the parents who never get to know their child’s percentile ranking on their worst skills). I sat before a scary official who’s primary goal is to keep costs low, and I fought to get as much therapy as possible . . . I have no idea what you all will do, but figured that “more” = “better”.

And here you are.

And I can’t help but slightly resent you (Just scheduling this initial meeting was challenging enough. I don’t want this for my kid. I want to be at the park, or the zoo. Not here.) and have all of my hopes pinned on you at the same time.


Please help her.



Please help me to help her.



We’re going to spend the next few years together, for better or worse. So let me share a few thoughts right up front----

First, the basics. Timeliness. You might be of the mind that 5-10 minutes late isn’t really “late”, it’s basically on time. I am not of that mind. Here’s why. I will always have my child ready for you 5 minutes early . . . so, if you are 10 minutes late we will have spent the last 15 minutes waiting around talking about your arrival. Also realize that we have 2 other appointments today . . . I knew that we had exactly 35 minutes between our last session and your arrival, which was, sadly, not enough time to get to the playground, so instead we had to settle for a quick snack and a walk around the block. Had I known we would actually have 10 extra minutes, we would have had time for the playground. I could have talked to neighborhood mom friends, and she could have played like an average kid. But here we are, sitting in the living room and watching the clock tick and getting more sad and frustrated with each passing minute that we could have been doing anything-other-than-waiting-for-you.

If, for whatever reason, you are running late, please let me know. If you are supposed to arrive at 3:30, texting me at 3:33 is not letting me know. It’s better than nothing, but only slightly.

And for the love of all that is good, if you arrive late you better be staying late. I don’t care if you have another appointment right after us. If you arrive 5 minutes late and leave on time, I will question your devotion to my child and think that you are just trying to pass the time.

Next, involve me. You have the therapeutic knowledge, and I have the knowledge of my kid. Let’s work together. If you ask me “Hey, are you open to taping her hands? Here’s why I think it would be a good idea . . . what do you think?” I will be open-minded and work with you. If you tell me “I’m going to tape her hands”, I will feel bossed around. Remember, we currently have 5 therapists, and each of you has your own agenda (and don’t even get me started on the doctors). Please let me be the mom and make decisions for my child, even if sometimes we don’t see eye to eye. If you let me be involved in the plan, I will be much more likely to go along with your ideas, because I will trust you.

Thirdly, I will ask a lot of questions. I will learn to watch my child and make mental notes, and hit you with a list of questions. (“Why does she move her tongue like that?” “How can I get her to unclench her thumb?” “ Is there a way to position my hands to help her balance better?”) I will not expect you to know every answer, but I would greatly appreciate it if you could help me find them. A simple “Hmm. Let me talk to my colleague and get back to you on that. We’ll figure something out.” will make me indebted you---you listened to me, admitted that you’re unsure, and committed to trying to learn more about how to help my kid. I will love you for this.

Finally, above all other things . . . please love my child. Or at least pretend that you do. I am scared for her, and I feel like we’re alone. I worry about if people will understand her, or put in the effort necessary to do so. I worry about whether people on the street will look at her differently. I worry about whether she’ll have friends.

You, therapists, are her first friends. She’ll learn to expect one of you when the doorbell rings, and (hopefully) she’ll get excited when she realizes that you’re here.

You’re the first people that she gets introduced to, and I’m nervously hoping that you’ll offer her smiles and hugs and encouragement.

If you love her, her days aren’t filled with “sessions”, they’re filled with “playdates”. She will have fun and learn and grow, and I will be eternally grateful that a) you are helping her and b) she is none the wiser. I want to think “she’s so lucky to have all of these great therapists coming to shower her with attention!” and not “poor kid, never gets to play with other kids because all we get to do is therapy.”

What's in a name?

I used to think, not much.  But after a Special Needs School Fair last night, and a frustrating genetics appointment this morning, I'm finding that I'm starting to feel like a name is more important than I initially thought.  I'm speaking, of course, of a name for the source of Maya's delays.  A diagnosis.

Last night the school fair was bustling, overwhelming---a million booths, representing all of the schools that can accomodate students with different needs from preschools to high schools.   Dave entertained Maya (they came to make it more of a family trip and less of something-I-was-afraid-of) while I scoured the map of the event, cross referencing different needs each school could accomodate and the neighborhoods they were located in.  And then I went to booths and waited for my turn to talk to the representatives from the schools I was interested in.

And while I waited I heard snippets of conversations around me "My son has cerebral palsy and uses a wheelchair" "My daughter is deaf but uses signs", etc.  But when it was my turn, I didn't have the right words to use.  I hadn't thought far enough ahead, and when they asked about my child's special needs, all that I had were "can't's". 

"Oh, well, you know, we don't exactly know what she has . . . some genetic syndrome . . . we're not really sure . . . she can't talk, can't walk, can't stand alone, etc."

And everytime I said it, I felt worse and worse.  Who wants to be defined by their "can'ts"? 

I wouldn't want to walk into a group of new people, shake hands and say "Hi, I can't run, can't jog, can't do push ups, can't write without starting every other sentence with "and", and can't do mental math if the problem involves a lot of 7's.  Oh, and my name is Dana."

I used to think that a diagnosis wouldn't matter, because it wouldn't change who Maya is, and it wouldn't change our plan of action (re: therapies).  But now it would be kind of nice---nice to be able to say "She has Abc Syndrome" and then move on.  As we get ready to transition out of the Early Intervention program and into the CPSE (preschool) system, a diagnosis would make arguing for services easier, applying for programs easier, and it would help us maybe find other families who are in the same place that we are. 

At our genetics appointment this morning, another test came back negative.  The geneticist is leaning towards one diagnosis (which can't be tested for), I don't think it's a good fit and I'm leaning another way (also difficult to test for).  We may both be wrong, who knows.  More bloodwork was ordered, results to come back in a few months.

Until then, Maya remains the same animal-loving, silly girl.  She spotted this goat in a store window (yes, a real stuffed goat . . .only on Madison Avenue) and shrieked and pointed until I wheeled her over:

(You should've seen the tears as we wheeled away.  She's screaming hysterically, passersby are giving me looks, and I'm saying "It wasn't even a real goat!" over and over)

She really wants to be vertical all of a sudden, and is trying like crazy to get around (here, marching through the hospital hallway this morning with Dad)

And while her form is lacking, she's getting quick with the stroller----and SHE CAN STEER NOW!!!!!!!!!!  This is huge . . . it means that she can decide where she wants to go and actually make that happen :) 

Notice the proud-as-can-be smile at 0:08, and the steering work at 0:20

As always, if you see a blank square with a play button, click play and the video will appear . . .

Amsterdam International

To fully get this post, please read (or re-read) Welcome to Holland before starting.  Thanks.

In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland."  It is supposed to explain what it's like to have a child with special needs.  It's short and sweet. 

It skips everything.

While "Welcome to Holland" has a place, I used to hate it.  It skipped over all of the agony of having a child with special needs and went right to the happy ending. 

The raw, painful, confusing entry into Holland was just glossed over.  And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.

If I had written "Welcome to Holland", I would have included the terrible entry time.  And it would sound like this:


Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.


And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

© Dana Nieder 10/2010 All Rights Reserved

Oh brother, times 10

In choosing to blog about life with a child with special needs, I think it would be irresponsible not to include some of the bad days . . . otherwise, readers who are in similar situations may feel like I'm idealizing life, or minimizing and skipping over the obnoxious, challenging parts.  Today was one of the lousier days.  If you're thinking "Lousy days be damned---make me smile!", then just skip ahead to the end :)

Today a lot of annoying things added up and became totally overwhelming.  Here were a few:

1. We have a huge stack of bills and insurance stuff to deal with. I have to call them, but I've been putting it off because although I hear of people "fighting with their insurance" to get things paid for, I have no idea what that actually means. I feel like I'm going to call and talk to some pencil pusher who says "we don't pay for that" and I'm going to say "you need to, the geneticist said she needed this test" and then he'll say "well, we don't" and then what do I do?  (I'm going to start making calls tomorrow, though.  I know I'll feel better once I address it.)

2. Parker's therapy dog class last night sucked, and I have a ton of work to do with him.

3. I can't get anywhere with the agencies that are supposed to sign off so that Maya can get splints for her legs. The process has been going on for literally months. I spent time basically bitching at several different people over the past 2 weeks, but all of them are powerless . . . the people who actually have the power to move it along either: are never in the office, don't answer their phones, or have permanently full voicemail boxes. I am waiting on a new phone number that I can start calling to bother people, and soon I'm going to request an address and just camp out there.  With Maya.  And Parker.  And we're going to sing "Wheels on the bus".  Over and over.  And then I'll change the lyrics to "The people in the office need to sign that form, sign that form, sign that form . . . the people in the office need to sign that form or we'll never, ever leave."

4. I worry that our lack of ability to get spints, and to get our speech agency changed, might indicate that this agency will mess up our transition to the preschool system, which starts in the winter/spring.

5. As I try to do all of this, I still am surrounded by way too much stuff at home. Why is there a pile of change, a tube of sunblock, and business cards on the counter?  Why can't we stay on top of putting things away, instead of emptying our pockets or stroller contents or whatever when we walk in the door?  (This is why the purging & reorganization project will continue, even if it's only at a snail's pace, until everything has a home that is easily accessible.)

I've just had it today.

And I tried sitting on the floor and crying, but it didn't help.  And Maya didn't understand what I was doing, and sat next to me with a furrowed brow.  Then I sniffled "Mommy's sad, Maya.  Can you give me a hug?"  And she climbed right into my lap and did just that.  Then she squeezed a handful of my face and I had to kick her off.
 
So, there's that.  It's not all sunshine and roses here . . . but we do have some good times :)  New pictures are up in the Facebook album "What clean(ing) looks like", so you can see progress in the media center bookshelves.  And here's a video of our dynamic duo . . . playing together in the hallway. 
 
Highlight: You may not have ever heard Maya talk before, because she gets pretty quiet when other folks are around.  But here, you can hear her version of "Pa-pa"----her nickname for Parker.  It's the only thing she'll reliably say almost every time we ask her to.  The silly part is that she says "Ma ma!" instead of "Pa-pa".   You'll hear it at 1:03.
 



Remember, if you just see a blank spot with a "play" arrow underneath, click the arrow and the video will start!

This isn't what (I thought) I wanted

Tomorrow Dave goes back to work, and a week from tomorrow the students return.  There's definitely a part of me that wishes I was going with him . . . I like getting up early, talking with the other staff (I <3 the KIPP family), being in brainstorming sessions and having philosophical this-is-what-we-want-our-school-to-be-like meetings.  Planning, photocopies, planning, organizing, planning . . . I like the excitement and busy-ness, the sense of new beginnings, that comes with the start of a new year.

But tomorrow I won't be there.  I'll be home, with Maya.  One therapy (OT) here in the morning, followed by a drive in Manhattan for therapy #2 (speech & feeding).  I have two appointments for Maya (ENT & developmental pediatrician) that need to be scheduled, a prescription to pick up at her pediatrician's office, and I have to schedule Parker's vet evaluation for his therapy certificate (classes start Sept 12!).  I have papers to sign and fax to get the agency for Maya's speech & feeding therapy agency changed, again, and will then be a thorn in the coordinator's side until I know that it's done.  The car will need to be moved (alternate side, ugh) and the dog walked.  Cleaning out the house will continue, and various projects will be done.  I'll think about things to blog about (and probably forget them).  I'll be hoping that Maya's croup-iness subsides, and that I won't need to take her in to see the pediatrician.  Maybe we'll have time to hit the playground before the first therapy, maybe not. 

I wasn't the stay at home mom type.

I worked for the first year after Maya was born, and stopped only because of her special needs.  It was nearly impossible to coordinate appointments, arguing with doctor's offices and navigating through the Early Intervention process, from school.  Once therapies were seriously starting, it was hard for me to keep up with what was going on, and the grading and planning that had to be done at home were overwhelming.  I was barely keeping my head above water.

But I really didn't want to leave work.

Like it was yesterday, I can remember sitting in the meeting when I would announce to my team that I wouldn't be returning, and I still couldn't get through it without tearing up.  "This isn't what I want to do, but it's what needs to be done, for now", I said.  And at that point I kind of thought that I would only need to leave for a year---study the therapists, help Maya catch up on her milestones, and bam, I'd be right back. No problem.

Not quite.

So as the back to school buzz crescendos this week, there's a part of me that is bitterly wistful, that's very "Hey!  What about me?  I want to be there too! I was a good teacher!  Don't forget me!"

And this isn't to say that working out of the home is better than being a stay at home mom, and it's not to say that staying at home is better than working.  It's just to paint the picture of how much I loved my work.

If you asked me 3 years ago if I wanted to be a stay-at-home mom, I would have said no.

But, as it turns out, I love staying at home with Maya too.  I like playing with her, the playground is fun, it's fun to watch her discover new things (like the decks of cards that she's totally obsessed with now, or her crush on Elmo) and make new sounds (da-da-da and nananana).  I love working with her and Parker, and drawing at the table.  I love the way she makes me laugh, like today when she decided that she needed some iced coffee, just like dad & mom:

If you asked me 3 years ago if I wanted to be a mom to a child with special needs, I would have said no.

But therapies are just a normal part of our days now, and the therapists have become the friends that I really chat with throughout the day (other than my sister).  I love the way they all love Maya, and she makes them laugh, and I like learning from them.  The appointments can be downers, but we make the best of them by choosing really amazing doctors and taking pictures, and videos. 

Without special needs, I wouldn't know about the amazing parents in the special needs world, the women in the support group that I've met. 

Without special needs, I might have missed celebrating all of the little things (like new sounds).  I'm apathetic by nature, and I might have just "yep, she makes noise.  kids make noise.  whoop-de-doo"-d right past it all.

Without special needs, we wouldn't have Parker.  And his therapy classes start in September . . . who knows where that volunteer work will lead.

This isn't what I thought I wanted . . . but I'm so happy where I am.   A few months ago things were pretty dark, and I wondered about how people come to terms with parenting their children with special needs---how to get past the sadness, the mourning, the wishing-things-were-different.

But I'm past it.  For now, anyway.  I know it's cyclical, and I know sadness will creep in from time to time (sometimes in a crushing way).  But for a while now, it's just been good.

So, KIPP family (and teacher folks in general), I'll miss you all tomorrow, and I'll miss being a part of the energy.  But I wouldn't trade places with any of you, either :)


(PS---Happy 1st day of Kindergarten tomorrow to my nephew Collin!)

Nap time

So I tried to start writing an update, maybe something that would evolve into wittiness, just jotting down thoughts to clean up later.  But then I decided to stop pushing for a creative update (which was just another thing on my to-do list) and just be real.  In italics, my intial drafting . . . following by my current state of frazzled-ness in bold, because I feel boldly frazzled.

Soon to come---a new video! (just waiting to be uploaded tonight)

Here we are, mid-nap time, and I'm trying to catch up on 53 things to do.   I finally have a chance to sit and write, and all of my interesting thoughts have flown out of my head.  So now I'm thinking about Writing 101---Who, What, Where, Why, When and How . . . let me give it a shot:

What kind of dog is that?  We get asked that nearly every time we take Parker out.  He's the magical mystery dog---absolutely adorable and I think that secretly everyone wants one just like him.  Many people just start a conversation by venturing a guess "Goldendoodle?" "Labradoodle?"  . . . but we've only had 2 correct guesses (and weirdly, one of them was from a 6 year old girl----future Dog Whisperer, perhaps).  Once we explain that he's a standard poodle, and just a puppy, we get "Whoa . . .he's big for 3.5 months!"  (Yikes! Tell me about it) The first week at obedience class, Parker was the same size as two other puppies.  This past week he was the biggest by far!

When  are we ever going to have free time again?  I just got off the phone (literally, the call interrupted my writing) with our new Early Intervention speech/feeding therapist.  And with that call, I had to fit 4 new therapy appointments per week into our already bursting schedule.  I feel stretched to the max.

Well, that writing experiment was a massive fail.  My phone keeps ringing, I'm not feeling entertaining, and I'm just stressed.  Here's what's really on my mind:


-a dear old friend going through a tough situation, and I feel like a little piece of my heart is with him.


-another friend's baby in surgery today, and a little pit in my stomach for them as they deal with the first time he's put under (I remember that so well with Maya's adenoids)


-a jumbled, messy apartment that I just can't seem to conquer---I'm stitching up one end as the other is unraveling.  The floors have to be cleaned constantly now, we leave the terrace door open a lot for the dog and all kind of dirt blows in.  There is laundry to do, laundry to fold, stuff to bring down to storage, I need to clean out the fridge, etc. 


-cooking that takes too long.  I can make a mean vat of tabouli that lasts all week, but the chopping and dicing and herb washing and more chopping, etc, etc takes forever.  I did an hour of prep on it earlier, but there's probably another hour left.  And I'm loving grilled veggie and goat cheese sandwiches (drizzled with olive oil), but the grill pan is so impossible to clean that I'm dreading grilling the marinated zucchini.


-how can I make sure I'm working enough with Maya . . . what new things should we be learning, etc.


-how can I make sure I'm working enough with Parker . . . what new things should we be learning, etc.


-how can I balance Maya and Parker?  Sometimes life would be a lot easier if I just took her to the playground . . . but then I feel like he should be there too, to get used to the smells and sounds and running kids, etc.  And then I take him everywhere, but get frustrated because we can't run in to the post office, grocery store, etc, because he's with me.  So it's a juggle .  . . I love having the two of them, and wouldn't trade it, but I'm a novice juggler right now.  I'm sure it will get easier.


-and now more appointments.  Sigh.

The not knowing

I'm not sure how to even begin this without sounding ridiculous and self-indulgent. But I think I will, and if you feel your eyes starting to roll, then skip ahead to a post with pictures or something . . . I won't be offended. But sometimes I learn a lot from reading the blogs of people who are in tough situations, and maybe a look into my processing will help someone else. Or, maybe you're just nosy and like the voyeurism of reading someone's innermost struggles :)

Maya still has no diagnosis for the source of her global developmental delays . . . and I don't like the be dramatic, or feel sorry for myself. Those two things combined have left me in an interesting place over the last year-ish. I haven't had a mental framework for how to interpret her . . . will she grow up to be a "normal" kid with delays, who will just need a little time to catch up . . . maybe start school a year late, or not even that? Or will she be a kid who will need to ride a special bus, go to a special school, and need assistive living when she's older? And I know that everyone wonders what the future will hold for their child, but our situation is, well, a little different.

The not knowing is killer. I hate it. In the beginning, I would go into every dr's appointment (and there were a lot of them) with a swirly mixture of dread and nervous excitement----"Maybe this is when they'll figure out what is wrong----I don't want something big to be wrong----but if you can't tell me that everything is normal, and least tell me what the something wrong is----please don't give me more of the not knowing." But we just gathered more and more handfuls of the not knowing, as tests (cardiac tests, karyotype, genetic screening, MRI) came back normal. And each test that came back normal was rightfully a cause for big celebration (!!!) but a little, teeny tiny, grey voice deep in my head would say "oh, come on already."

I realized a week or so ago that I've been pinballing (that's when you shoot back and forth like the ball in a pinball machine) around through Kubler-Ross's stages of grief (even though I wouldn't necessarily call my thinking grieving, maybe it fits). In any given week, and sometimes on any given day, I would spend time in anger (at the world, at the system, at the doctors, sometimes at Maya), denial (she's just taking her time), depression ( ), and acceptance. And as quickly as I wrapped some sort of acceptance around me, it would slip away a little bit and denial would swoop back in. Although the ratios of time-spent-in-each-place have changed, I've been pinballing for a long time now.

Like 15 months.

At times I've wished for something with a name. At least "Down syndrome" would be a label that people could understand. It's hard to go to music class, or the pool, or anywhere where we often see the same groups of parents, and not have a way to clear the air. 12 and 13 month olds are running around the room in circles, and Maya (21 months) bounces in the middle and laughs, but she doesn't move (unless the door is left open, and then she crawls with lightening speed). I'm sure people wonder. But I have no words to break the ice with . . . at least no easy ones. And I'm not going to launch into a whole "Oh she has delays" speech. I just need a soundbite, something that shows that she's different, I know it, we're able to laugh at ourselves and take things in stride and with grace, and let's move on to chat about something more fun. I'm bite-less.

Anyway, I've realized that some people might feel like they've missed the announcement. Like, wait, I heard Maya is getting a trillion therapies a week---what's wrong with her? Did Dana ever tell you? But there's just been nothing to tell.

Suddenly, now, I can't do the pinballing. I'm so tired of it. So I'm owning the label "special needs" which I really didn't feel comfortable with until last week. I thought that label should be saved for kids who really had special needs, not silly Maya, and then Dave said "Um, she gets like 12 therapies a week, that's special needs". Yeah, I guess so----it doesn't bum me out, I just didn't want to take the label and use it in a "oh, so sad for me, my kid has special needs" kind of way.

So I'm boxing up as much denial as I can, and putting it on a high shelf somewhere, hopefully next to my box of not knowing. I know that I'll still end up looking through both of them from time to time, but they need to be further away. The ambiguity has got to go for now, I need to be in a making-peace-and-moving-on place. And I think I'm getting really close to there.

So the goal of all of this, besides clearing my own head, was to clear the air about where Maya is, and also to let people in a little. I tend to be fairly dry most of the time (in case you haven't noticed), but maybe it's helpful to come clean once in a while.

So many things, so little time

So we've done a million things since my last blog posting (obviously, as it was in July).

-We went on a family vacation to Vermont and learned that Maya's love for animals does not discriminate . . . she loves chickens, horses, cows . . . she even loves pigeons, which is very convenient when we're out for walks.

-She's still crawling like a little devil, good at kneeling and holding herself up in kneeling to play with stuff. Getting closer to pulling up to stand, but not there yet.

-She has made AMAZING feeding progress. In the past 4 weeks or so she has turned into a girl who eats. She has 3 meals a day (faves are cream top vanilla yogurt, baby food macacroni & cheese, and something called apple-turkey-cranberry). She has gone from having mostly bottles with tastes of food to having 3 meals of baby food and only 3 bottles a day!

-In the past 2 months she has started showing us that she understands us (from time to time) which has been a HUGE relief to me. She used to only understand the words "Maya" and "Up". But now she also knows "All done", "Ba-ba" (bottle), "Water", "Eat", "Come", "Bunny" (we got a very cute new bunny named Gus) and I think "dog" and "bird" but I'm not sure. She will also hand something over if you ask for it with your hand out. It's amazing :)

-She loves swimming and will "jump" into the pool. Well, kind of. I sit her on the edge and then say "Come to mama, come to mama" and she'll stretch her little arms out and kind of tip her way in. Supercute :)

-She is sleeping through the night (ish). We just finished night 5 of our sleep training (we didn't read a book or anything, just used common sense). Now that she's eating well, she wasn't drinking as much of her bottle in the middle of the night, so we figured that we should just drop it. Night 1 was rough, night 2 was less rough, nights 3 and 4 were annoying but not tear-filled, and this morning she didn't wake up until 6! I've decided that she's "allowed" to wake up any time after 6:30, which means that that's when we'll go get her, and she just played around in her crib until then. I'm hoping that this will just continue now, but who knows.

Many pictures and video to come, eventually.

I should start with something positive . . . we had a fantastic break. We swam, went to the zoo, went to parks, played, etc. Lots of family fun time. All of the doctors were on vacation, which ended up forcing us to have a week without doctors . . . it was annoying not to get anything done while we were off from work, but ended up being lovely. It often strikes me as very sad that we are spending so much of Maya's babyhood driving to every doctor under the sun.

That said, today the doctors were back and so were we. Dave took the day off from work (thanks to the other KIPP teachers who make this possible!) to come with us to the ENT and the neurologist.


1. The ENT checked out Maya and saw that her adenoids were still enlarged. We're going to go ahead with surgery next Thursday, April 30th (her 11 month birthday!) to remove them. It's really hard to decide whether someone else (who can't speak) should have an operation. But we have hopes that she will be able to breathe easier, and that she may progress faster towards eating with the extra breathing space. Currently, her adenoids are obstructing about 70% of the speace that she breathes through, which is a lot. That said, it will obviously be sad and scary to send her into surgery :(

This is what they should look like, if they weren't swollen:



2. Neurologist: The neurologist and his partner were really, really nice. That said, it was stupid to go see them. I had made this appointment by accident (I was supposed to find a developmental pediatrician, not a pediatric neurologist) a few months ago, and decided to keep it because . . . why not? Maybe they would just clear her neurologically and that would be one less thing to worry about? Turns out not so much.

If you went to a proctologist and complained that every time you ate, your stomach hurt, you'd expect them to go in (yikes!) for a look, no? Because looking up people's rear end is what they do. Well, if you take a baby to a neurologist because she doesn't eat and has developmental delays, they want to take a look at her brain. Because looking at brains is what they do. But hearing 2 medical folks suggest a brain MRI (which requires 45 minutes of sedation) after you've just barely wrapped your head around 30 minutes of sedation and surgery next week . . . well, it's not a fun afternoon.

We decided not to do it----there's really no reason to at this time. If some other doctor had suggested seeing a neurologist, we'd follow through, but since I just brought us in there, no. If her therapies don't help, and her 1 year follow-up genetic testing doesn't show anything, and we're still at a stand-still in a few months, maybe then we'll go for tests. But now it seems excessive. And we're so tired of tests and evaluations.

Any specialist that you go to will want to run their specialty's barrage of tests. I was an idiot for not seeing that one coming.

And Maya? Happy as a clam. Giggled like a loon when the neurologist tickled her :)

The highlight of the day ----getting asked our #1 favorite question. The geneticist asked us a while back, and the neurologist asked us again today, as part of their standard questions to Dave and I : "Do you guys have any health problems? Any family history of genetic issues? . . . and, Are you two related?" Fantastic.

Today we had Maya's case review. Although not surprising, it's somewhat demoralizing to go through each evaluation (5 in all) and hear that she's operating at about a 5 month level. Therapies will likely be 2-3 times a week, for a total of 6-8 sessions per week. A lot of appointments. I'm not feeling chipper, that's all I've got today.

Here are 2 parting videos, in case you're not a friend of mine on Facebook (I posted them to Facebook last week). These are great :)