ABOUT CONSULTING WATCH! ARCHIVES CONTACT SUBSCRIBE

My New Normal

I hate to harp. Scratch that, I love to harp. I love to work problems over and over in my mind (or Google) until they become like a piece of driftwood that has been worried by the tides for years and years and is finally smooth and edgeless – only then can I finally discard them. But, as you know, worry doesn’t change anything. As I described a few posts ago, I have been choosing a different path. It’s my own thing: a blend of optimism -as in I have every reason to believe that Sadie will be fine and progress; an adjustment of expectations – developing much more slowly than her sister is another form of fine; needing a few years of therapy and possibly having a learning disability or other challenges is also a form of fine. Is it fine like I’m throwing a parade and princess waving from atop a float to show how awesome it is that my baby isn’t meeting her milestones? Not exactly. But it is what it is.

Many moons ago when I was pregnant with Elby, I thought the worst thing that could possibly happen would be to find out my daughter had Down syndrome. “God, how horrible! How utterly un-doable that would be,” I thought as I obsessively read Baby Center boards for people who were pregnant with Down syndrome babies or had Down syndrome children. Somehow in my mind I think there was this “perfect” experience that having a child was supposed to be. In part this might have led to my postpartum depression (okay that and my fucked up genetics – bipolar father anyone?) but it also led to a faulty belief that because Elby was “normal” everything was fine (there’s that word again, right?).

What I’m finding out is that Sadie is fine too. More than fine. She freaking adorable. And people with a child with Down syndrome? They love their children every bit as much as I love mine. They too want to eat them up and help them have the best opportunities they can. That’s obviously a different situation, one that must be filled with its own very unique heartbreak and challenges, I’m not speaking as someone whose been there. I’ve been somewhere else, but that somewhere else is just a short flight. We’re all a short flight away from something totally different. Does that even make sense?

A few days ago, I took Sadie to see her GI, Dr. Edelstein (she’s brilliant and might I add that she had twins in December and already is a skinny bitch). Dr. E thinks Sadie is doing great but sat down with me to go over everything that happened in my pregnancy (which she determined was more complicated than originally thought) and everything that’s gone on with Sadie since. She is referring me to an Endocrinologist to make sure that she is producing growth hormones and that there is no underlying hormonal issue that may be affecting her growth. Sure, I’m in.

Then she said I could also go to a neurologist and have a brain MRI because it’s very possible that Sadie was compromised of oxygen in the womb. Apparently the good news -oh yeah, you didn’t think there would be good news following that did you? – is that babies who have brain…I don’t know…shit going on? Are often able to heal and be fine. Something about the brain rewiring itself to work around the problem. I don’t really know please don’t quiz me on this. Anyway, the brain MRI could show if there’s damage.

“So, say she has damage,” I said to Dr. E. “What then?”

“Well, nothing more than you’re doing. We can’t treat it. But it would explain her delays.”

“Yeah, then no. I’m not putting my child through an MRI so that I can have it confirmed that she has delays. If it won’t change her therapy then who cares?”

YEAH, THAT WAS ME SAYING WHO CARES. If you know me, you know how awe-inspiring that really is. And I expect kuddos. Because this is about me.

“Great. I don’t think you should do the MRI either. I think she’ll be fine.”

But you see, she already is fine. She’s Sadie.

And tomorrow she gets her speech therapy evaluation. I hope the first words she learns are “suck it bitches!”

Posted by Stefanie Wilder Taylor on May 15, 2009 8:54 pmSadie38 comments  

38 Comments

  1. Anonymous said,

    My goodness gracious, do they get any cuter? She is tiny and just adorable.

    My hunch is that doctors are trained to look at symptoms and then to build up from the symptoms to a diagnosis so what you continue to get are various takes on the symptoms (depending on the specialty of the doctor), which you already know. Schools do the same thing so be prepared for a continuation of this. It isn’t a bad thing, just unnerving. And, best to delete normal from your vocabulary. There is no normal anymore. We all just sit somewhere on a continuum.

    | May 19, 2009 @ 12:18 am

  2. Amanda said,

    Kudos to you, and to Miss Sadie for being so kick ass!

    | May 19, 2009 @ 12:39 am

  3. Mrs. Wright said,

    I think she’s awesome, and you’re obviously a great mom.

    And she’s totally ‘Donald Firing’ you in that picture… Go Sadie!

    | May 19, 2009 @ 12:43 am

  4. C said,

    For what it’s worth, my daughter Elanor had a stroke at 1 week old. She has some damage on the MRI, but is growing normally now (if on the small side…we’re hanging onto the growth charts by our fingernails)and her development is fine.

    What we’re told as well is that the younger damage occurs, the better the odds are that the child will just rewire around it. The neuropathways aren’t fully developed so it’s possible to rewire around it.

    Elanor has had multiple MRI’s, CT scans, and head ultrasounds. What we hear over and over is that it’s all about the child…there are kids with minimal damage or no visible damage with delays and there are kids who show damage and do not demonstrate any delays.

    I think you’re making the choice that’s right for you. In the end, it changes nothing beyond providing information that you may or may not find useful. If you think it isn’t, then don’t…god knows the prep SUCKS…no food/formula 6 hours prior to the MRI, only water/pedialyte until 2 hours prior to the MRI/ nothing for the last 2 hours…an IV to put them to sleep, etc. It makes for a stressful day, that’s for sure.

    | May 19, 2009 @ 12:54 am

  5. Anna Marie said,

    GOOD FOR YOU.

    After Thomas was born the hospital made 12 – yes TWELVE – follow-up appointments with specialists so everyone could check him out and study him. After the first 3 I took the list to our pediatrician and asked her to tell me which of the upcoming appts were absolutely vital. We only went to 2 more on her recommendation. At some point you just come to the realization that you don’t CARE what might be wrong – you deal with it as it comes and that’s that.

    Miss Sadie is perfect.

    | May 19, 2009 @ 1:22 am

  6. Greg Bulmash said,

    Hey Stephanie,

    Probably the last time I saw you was when you, I, and Marcie Smolin were booked in as ringers in the “Funniest Person in Simi Valley” contest back in 1990.

    I was blogging about a friend of mine who basically sets himself on fire for performance art and it made me think, “do I have any funny stories about friends setting themselves on fire?”

    I remembered when we were leaning against a shelf along the back wall of The Comedy Store back in 1989. You accidentally dipped your hair into a candle you didn’t realize was behind you. Cheyenne and I frantically patted you out. Then, as we were driving along Sunset, heading to another club, we saw a billboard that said “Worried about hair loss?” and we were in stitches.

    Anyway, I could have the wrong Stephanie, but the IMDb says the Stephanie I bummed around the L.A. comedy scene with in ’89 and Stephanie Wilder-Taylor are the same person.

    So, with four-year-old and six-month-old boys asleep in their rooms down the hall, an old dad who was remembering you from 20 years ago Googled you, read some of your blog, had a laugh, and just wanted to say “hey” and that he’s happy to see you’re still bringin’ the funny.

    | May 19, 2009 @ 3:32 am

  7. Kizz said,

    She’s frickin cute as hell.

    xxoo

    | May 19, 2009 @ 3:36 am

  8. Undomestic Diva said,

    And please, when she does say “Suck it bitches!” be sure to get that on video. :)

    With all my sister’s ailments, we’ve finally come to realize that sometimes all the tests (and there have been LOTS of tests) are more damaging or stressful than the reality… I hope this is the same for Sadie too – that the tests become less necessary and fewer and farther between.

    | May 19, 2009 @ 3:45 am

  9. Beth said,

    Wonderful post. Your writing is not only humorous but so truthful and inspiring. You are an amazingly gifted writer!!!

    Sadie is PRECIOUS and I love your attitude (being the insane worrier that I am). I agree with your MRI decision… what would be the benefit of it?!?

    Thanks, as always, for sharing your journey.

    | May 19, 2009 @ 3:54 am

  10. Trish said,

    Well said.
    The NP at our GI has 26 weeker twins, one of whom had a brain hemorrhage after a surgery. For other reasons, they did an MRI just before he was discharged from the NICU and essentially one of his lobes is all but gone.
    He's a little delayed- mainly gross motor and speech, but his receptive language & such are fine. His brain is working around it.
    After she told me that, I briefly wondered about Robbie's brain, then quickly decided I just don't want to know.
    If there was some treatment for it- sure. But just to have something else to wring my hands over? Something else to label him with? Fuck that.
    He's fine the way he is and we'll manage his troubles as they come.

    –Trish

    | May 19, 2009 @ 5:17 am

  11. Anonymous said,

    I think you’re right on with you decision. My son is delayed developmentally. We got a MRI, it didn’t show anything. We just got it to rule out anything serious, like CP. So, essentially we keep him in therapy.

    BTW, when we got the MRI it was super easy. No food/drink for 4 hours, we brought him at naptime, where he was given a low dose of valium. He slept for a half hour. When he woke up, it was over. Just like a normal nap, slightly deeper.

    | May 19, 2009 @ 8:00 am

  12. Kay said,

    It’s not an easy place to come to, but when you get there – realizing that some of the testing and poking and prodding is more for the benefit of the parents and doctors than the child – all of a sudden things become clearer. Why make Sadie uncomfortable if it’s not going to benefit her, only you? Or soothe the doctors’ egos?
    My son was 6 months when they told us he’d be profoundly delayed and had a very short life expectancy – we made the decision shortly after that his life would be about HIM, not us, and have never regretted it since. We’ll be celebrating his 11th birthday this year, so it seems to have worked – he’s such a happy child :)

    When you have a minute, read “Welcome to Holland”…
    http://www.our-kids.org/Archives/Holland.html
    Then, for another perspective, read the parent of an autistic child’s response to it…
    http://www.autism-pdd.net/testdump/test16481.htm

    You’re making the decisions that are right for Sadie, and right for your family. Give yourself a pat on the back for doing that, and not being selfish about it.

    She’s gorgeous, btw!!!

    | May 19, 2009 @ 10:44 am

  13. LuLu and Moxley's Mom said,

    Sadie is a precious girl! I think you should ask the speech therapist to teach her to say “suck it bitches!” first. Say that’s the only way insurance will cover her services or something…

    | May 19, 2009 @ 12:13 pm

  14. Mary Freaking Poppins said,

    Nice. I love it.

    | May 19, 2009 @ 12:47 pm

  15. Sarah said,

    What a great outlook. This is so positive for Sadie. She is fine and she will grow up to be a kick ass part of this world.

    | May 19, 2009 @ 12:50 pm

  16. CRUSTYBEEF said,

    good luck with the evaulation.

    My son’s first words from all the weekly at home lessons with his ST were, “BALLS!”

    just kidding.

    or am I.

    Great post as usual!

    | May 19, 2009 @ 1:05 pm

  17. Kristin said,

    I think you are making the right decision. I also think that if you went with the MRI that would be the right decision. You guys are her parents and it is up to you to decide how to proceed here. You have to weigh the benefits of whatever knowledge may be gained from another test against how much pain/discomfort/worry etc. you’ll be putting your child and yourselves through.

    A little girl in my son’s daycare (she’s now 2 and a half)suffered some trauma at birth, including maybe being deprived of oxygen. She was delayed in meeting many milestones and her parents were worried. She did eventually meet all of them, but it was on her own, very different, schedule.

    The one she didn’t seem to hit was speech development. She didn’t say ANYTHING for about the first 28 months of her life, except grunting and pointing. They took her to many different specialists and had tons of tests done. They couldn’t find anything definitive, but they were told more than once that she may never have normal speech. Last month she started to talk. In sentences. She is now probably more verbal than some of the other kids her age there.

    I talked to her mom last week and she said that they’ve decided to accept the fact that she’s going to develop at her own pace. It has been a very long and frustrating 2.5 years for them and she said that what she’s learned from it is that you just can’t predict what is going to happen. Her child’s development seems to happen in in quick bursts after very long periods of what appears to be inactivity.

    I know your situation is different, but it reminded me of this little girl. You have to do the best you can to help, but also accept that your daughter is going to do things at her own pace. I think you’re doing a great job!

    | May 19, 2009 @ 1:37 pm

  18. Wicked Step Mom said,

    I am hoping for her for words to be “Bring it on, bitches!” But, that is just me…

    I am glad that you are not putting her through the MRI. If it won’t change anything, it will be another test that she has to go through. She is going to move at her own pace for a while. And I am glad that you can accept it. I would be just as bad as you, if not worse. I would worry myself sick.

    | May 19, 2009 @ 1:48 pm

  19. Cass said,

    I’m getting to that part in the evolution of acceptance, too. I like your attitude. And good for Sadie for having such an awesome mom who advocates for her best interests. ((hugs))

    | May 19, 2009 @ 2:14 pm

  20. SmartAssMom said,

    We just had the MRI convo ourselves and the neuro said the same thing…nah, she doesn’t need it.
    Somewhere along the way of figuring out it’s unlikely there is anything serious wrong, I also came to the same peace as you. Sure, she’s got some delays and her noggin looks like a pancake from some angles. But she’s here. And it that’s the worst of it, I’ll take it.
    Love the picture, BTW.

    | May 19, 2009 @ 3:47 pm

  21. Aunt Becky said,

    After having *2* (now) kids who have developmental issues requiring therapy, I can firmly say this: normalcy is overrated. Fuck being normal. It’s fucking boring.

    Sadie rules. And I am going to nom, nom, nom her when I come out.

    | May 19, 2009 @ 3:49 pm

  22. CaraBee said,

    We’re fighting this now. My daughter is behind the curve in speech and we’re jumping through the hoops trying to figure out why. First it was hearing and now a speech pathologist. The thing is, normal is all over the place. What is normal? My daughter is only 19 months old, why are you (the doctors) making me feel like something is wrong with her because she only says 6 or 7 words? I think they (the doctors) rely a little too heavily on the charts and not enough on common sense. Sadie is beautiful and wonderful. You do what you feel is right for her.

    | May 19, 2009 @ 4:11 pm

  23. Susan said,

    Well done! One day soon we expect you to post video of Sadie saying, “Suck it, bitches!”

    | May 19, 2009 @ 4:50 pm

  24. Brooke said,

    Way to be your sweet little girl’s advocate and a kick ass mom! When my Aislynn (3.5 now) was 2 we went through a large drama surrounding the possible diagnosis of autism. At first I was a wreck, then I remembered I was a kick ass mom as well, and no diagnosis was going to change who my sweet little girl was. I did everything in my human mommy power to help her with her delays in speech and socialization, and get her the help she needed when neccessary. By the time her autism diagnostic came around, autism was ruled out! We dealt with the delays and she has caught up the point that her delays are almost unrecognizable. Children are so resilient and amazing little fighters. Maybe after she announces,”Suck it bitches!” her next phrase can be “Eat it!”

    | May 19, 2009 @ 5:03 pm

  25. Julia said,

    Indeed. We are all just a short trip from somewhere else.

    And if Sadie needs help getting the word out that everyone else can suck it – well, I happen to know a few loud-mouths who can shout it to roof tops.

    Massive props for turning down the MRI. A pediatric geneticist offered the same for us to see if there was any calcification in Caroline’s brain. Treatment? No. So, yeah, I passed.

    | May 19, 2009 @ 6:11 pm

  26. Becky said,

    I know what you mean about just not caring anymore. We met with my little guy’s surgeon Friday and he suggested another surgery. They want to operate again and they want to do it this Thursday. I tried arguing with the guy but, geezzz, surgeons are difficult to argue with, they think they know everything. I may have not gone to med school, but I know my little guy and………I just don’t want to chance another surgery! What if they get in there and mess things up! Can’t we just leave well enough alone??? If they get in there and mess it all up then that means another surgery and another 12 weeks in a body cast and that means we could damage his growth plate, which turns something bad into worse, and that means we are one step closer to losing his leg.

    | May 19, 2009 @ 6:23 pm

  27. Andee said,

    Good for you. I love the picture.

    | May 19, 2009 @ 7:13 pm

  28. Mommy Melee said,

    It’s a beautiful normal.

    | May 19, 2009 @ 10:52 pm

  29. Kendra said,

    Good for you! And giant kudos on the learning to let go of expectations. I am way behind you in that department.

    Having kids is such a scary thing, and I’m just starting to accept that there’s no point where you can stop worrying. Even when everything seems fine, it can always change. The only way to maintain your sanity is to have some small amount of perspective. Sounds like you have a great GI and a great perspective. Not to mention a really adorable daughter!

    | May 19, 2009 @ 11:14 pm

  30. Kelsey said,

    Sounds like an MRI would have just been some unnecessary trauma for all of you. I all about early identification and intervention, but it sounds like you weren’t going to really learn anything from that test.

    I have to have little pep talks with myself all the time to just relax and not compare my preemie’s development with other babies his age – some days I do it better than others. I cannot imagine the energy I would have to put into that decision if I had two babies the same age in my house!

    Sadie is just perfect the way she is – how could anyone not LOVE that face?

    | May 20, 2009 @ 12:23 am

  31. Jennifer said,

    My second daughter had seizures just hours after birth, spent two weeks in the NICU, and had an MRI during that time. After the MRI we were told she had significant, traumatic, and serious brain damage and that she’d be severely developmentally delayed, need a feeding tube, have serious physical handicaps, etc. (They think she had strokes, but don’t know for sure.) The ONLY thing that we heard during her entire NICU stay that made any sense to us was to let her be our guide in this journey–listen to her, let her show us what she’s capable of. It was a hard adjustment for me to put my faith in her tiny hands, but it’s been the best possible course of action. And guess what? She is on a totally normal development path at 16 months–she’s doing amazingly well and I couldn’t be prouder of her. There may still be issues ahead, but for now, we live in the present and celebrate the successes when they happen. :) We also turned down a repeat MRI. Why put ourselves through it when the proof of how well she’s doing is right in front of us?

    Docs don’t know everything, but your little cutie (and she is adorable) is *the* expert on who she is and what she can do. And you are the next expert in line–not the docs. Kudos to you for trusting her, and for trusting yourself. :)

    | May 20, 2009 @ 2:06 pm

  32. limefreckle said,

    You have a great attitude! I have a son who is now 8, he has PDD-NOS (which is on the autism spectrum) I remember when we started to see things were developing differently, I too thought the worst thing in the world would be if I had a child with Autism, or Downs Syndrome — those were the 2 things that seem to scare me the most when I was pregnant! Turns out it’s really not so bad!!! You play the cards you have been dealt, and you can do it with a good attitude, or a bad one….I prefer the good way…..with much wine, sarcasm and laughter along the way of course!!! It’s hard to have a child not meeting their developmental milestones — but from my experience, this age that your daugther is at right now is the worst….it gets better as they get better, and you’ll be much happier if you keep your zen attitude, and let her lead the way…..I always felt my son would develop at his own good time (he’s that kind of kid, he likes to do things his way) and he’s come leaps and bounds since those early years — your daughter will too!

    | May 20, 2009 @ 2:32 pm

  33. Lee of MWOB said,

    Stephanie – right on! I love the whole who cares? Because if knowing what’s “wrong” exactly doesn’t change anything that is going on now in your and Sadie’s fine life, the hell yeah – who cares?

    Good for you. And that kid is adorable. Gotta meet those loves of yours…

    :-)

    | May 20, 2009 @ 5:30 pm

  34. KimN said,

    Wow, so glad I stumbled upon this post from Julia’s blog. I am currently 31.5 weeks pregnant with a baby girl that has multiple brain issues. She has severe hydrocephalus (fluid in the brain) and possible other malformations that could be a rare (1/25,000 births) disorder called a Dandy Walker Variant. The dr.’s can’t give us a prognosis but the spectrum is anything from just fine, mild delays, major developmental issues, to death. You hit the nail on the head when you talked about it being “fine”. We’ve been dealing with this information for several months now and at first it seemed so overwhelming and awful that I was certain my world was going to come to a crashing halt. What I’ve come to realize (and should have already known given my history which is waaayyy too long for a comment) is that life is all about revising your expectations of normal and good. Yes, things may not be the “perfect” scenario I envisioned, but they will be great. No matter what. Not that I don’t have bad days and not that I don’t want my daughter to grow up and do all the things that most people do. However I will love her irregardless.

    | May 20, 2009 @ 6:39 pm

  35. Anonymous said,

    As a parent of a child with down syndrome, let me tell you, I know exactly what you mean.

    | May 21, 2009 @ 1:24 am

  36. Anne said,

    My oldest son has Down syndrome and he’s one of the greatest three people I’ve ever met (the other two are his siblings, twins born almost two years later when my oldest son was being treated for leukemia).

    My oldest son’s diagnosis is so much a part of him, yet so much apart from him, that our life feels completely typical to us. I wouldn’t want it any other way.

    (P. S. It’s Down syndrome, no “‘s” and no capital “s.” I’m just sayin’.)

    | May 22, 2009 @ 9:04 pm

  37. winecat said,

    She’s absolutely adorable.
    And Yeah on you for being able to accept things the way they are (a problem I have myself)

    | May 24, 2009 @ 2:26 am

  38. Kaza said,

    And until she can, we’ll say “suck it bitches” for her. MAJOR kudos on saying “suck it” to the MRI.

    | May 24, 2009 @ 8:11 pm

RSS feed for comments on this post

Subscribe

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

peel n stick customized labels

use the code babyonbored and save 10%


Gummi Bears Should Not Be Organic: And Other Opinions I Can't Back Up With Facts
Buy the Book:

Amazon

Barnes and Noble

iBooks

I'm Kind of a Big Deal
Read an Excerpt!
Buy the Book:
Amazon | B & N

It's Not Me It's You
Read an Excerpt!
Buy the Book:
Amazon | B & N

Naptime is the New Happy Hour
Read an Excerpt!

Buy the Book:
Amazon | B & N

Sippy Cups Are Not for Chardonnay
Read an Excerpt!

Buy the Book:
Amazon | B & N