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Jul 15, 2009

Roller Coaster of Life

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It’s been such a busy 36 hours here, full of ups and downs and uncertainties. I’ve barely had time to sit down long enough to process it all.

The good:
Remember that job I applied for in a local small hospital? I got it! I’ll be working in the Birth Center as a labor/delivery/postpartum nurse. I’m thrilled to be starting my nursing career in a specialty I’m interested in, and the smaller hospital size may work to my favor.

The bad:
It’ll be a long commute – over 45 minutes. And I was a little surprised to realize that the starting pay is equal to what I used to make as a technical writer five years ago. Ah well, it’ll be worth it to be working with mamas and babies.

The good:
After Mira’s well-child check when she turned two, we were told to schedule an appt. with Children’s Hospital for a speech evaluation. Mira had an evaluation with Help Me Grow last fall, but her pediatrician wanted to see a more aggressive therapy schedule. After waiting over a month, we got an appointment and Mira spent the morning with the speech pathologist today. She was amazed that Mira can speak in full 3-4 word sentences. We heard the word “gifted” again.

The bad:
Although she can speak in 3-4 word sentences, good luck trying to figure out what those words are. Mira is a smart little kid, but she was diagnosed with apraxia of speech. It means that somewhere between her brain and the muscles in her mouth, the message is getting garbled, resulting in poor muscle coordination with her mouth.

It’s nothing that therapy can’t fix, although I’m not looking forward to the fight we’ll have trying to convince the World’s Most Stubborn Toddler to cooperate in even more speech therapy.

The not-so-good:
Cordy’s had a rough week or so. She’s been extremely uncooperative, rude and had several outbursts when frustrated. The culmination was at summer camp today, when she freaked out at swimming time, refusing to go into the water, pinching another child, and then when she had a full-out meltdown, she kicked her teacher and then lost control of her bladder, peeing on her teacher. Not her best day.

The uncertain:
Tomorrow Cordy goes in for surgery. It’ll be early in the day, and as long as the hospital has wireless I’ll probably be tweeting to keep from going insane from worry. I’m sure her tooth has been hurting her – maybe it was the reason she’s been acting out so much? – but the thought of my little girl undergoing general anesthesia is hard to bear. Cordy often has strange reactions to medications, and I don’t know which way she’ll react to what they give her.

I’ve had nightmares for days about something going wrong, then waking up in a full panic attack, trying to stop the tears. Were this Mira, I would not be as worried. Don’t get me wrong – I love Mira just as much, but she’s an amazingly tough kid. She’s never seemed as medically fragile as Cordy. Ha, I can’t believe I just called Cordy fragile. My Amazon warrior princess?

So spare a thought for Cordy in the morning, and hopefully I’ll be reporting that her surgery was quick, routine, and we’ll be home in time for her to watch Word World.

Filed Under: Amazons, big issues, Cordy, Mira, the J-O-B ·


Jul 1, 2009

Sick Babies, or Tiny Possibilities?

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In the midst of all this tooth drama, I forgot to mention that yesterday morning I got to observe in a NICU for five hours. I was supposed to do this observation while I was in school, but it didn’t get set up until now, and despite Cordy’s tooth, I couldn’t turn down the offer to observe. (Besides, the emergency clinic was open in the afternoon, so there was no conflict of my time, other than no time for me to eat lunch.)

Some people don’t like the NICU. (Neonatal Intensive Care Unit, for those not initiated to hospital-speak.) I can understand that – the area is filled with crib after crib of small and sick babies, many facing life-threatening illnesses and prematurity. Not all of the babies who come into the NICU get the chance to see outside of the NICU again. Some babies are so small that you wonder how it is even possible for them to survive at that size.

I watched a team of doctors and nurses rush to save a baby who had stopped breathing. Her skin faded to white, the monitor flashed red alarms signaling she wasn’t getting the air she needed, and her heart rate began to slow to the 40’s. As I stood back and watched, I’ll admit I was scared for that baby I had never met. In my head, I repeated, “C’mon kid, hang in there. You can do it. Hang in there…” I heard nurses saying that she was usually a stable baby. No one expected her to take this sudden downhill plunge.

But at the same time, miracles can be found in the NICU every day. That group of skilled doctors and nurses worked together as a team – chaotic but with unified purpose – and within minutes they had that baby breathing again. Twenty minutes later, she was stable once again, back on track to heal and grow and someday go home with her parents to live out her destiny.

In my five hours of observation, that wasn’t the only baby who called a large group of medical professionals to her side. When I got a tour of the entire NICU area, the nurse I was shadowing showed me babies of all types: micro-preemies, those with genetic abnormalities, babies withdrawing from drug addiction. I even got to see the infant who was found by a mailman, wrapped in plastic on an abandoned porch last weekend.

Honestly, I loved my time there. Some may see the NICU as too sad, but I see it as full of hope and possibility. Look at how far we’ve come. Thirty years ago, many of the babies in this NICU would have no chance of survival. Twenty years. Ten years, even. Nearly thirty-four years ago, my mother gave birth to a baby at 32 weeks gestation. Today, she would have an excellent chance at survival. Back then, she was simply too young, too sick.

The research and medical advances made in neonatology have made it possible for younger, sicker infants to have better outcomes today. (With lots of help from charities like March of Dimes, of course.) As I rocked a baby going through drug withdrawal, I marveled at how we now have the ability to keep her comfortable and help ease her through the withdrawal. And I realized how much I would enjoy working in a NICU, helping little people get through a rough start in life to experience the possibilities life has to offer and being on the front lines in new medical breakthroughs to save even more babies.

Just think of how many medical advances we’ll see in the next ten, twenty, thirty years. It’s pretty amazing to consider.

Filed Under: big issues, school ·


Jun 16, 2009

Unwanted on 1st Day of Camp – A New Record!

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I was hoping for a first day of summer camp that would end with reports of “she did great!” and in some ways it did. But that statement was also followed with “until…”

Cordy’s camp ends at 1:30pm each day, and we arranged it so she stays in after-camp until 3:30 three days a week. She’ll be in all-day Pre-K in the fall, and she needs to start getting used to a longer day. I figured this was a good place to start. This morning I met her after-camp teacher, and after warning her that Cordy would likely be having a rough day today, her response? “Oh, I’ve cared for lots of kids and I’ve seen everything! There’s no kid I can’t handle!”

Today, at 1:45pm, I got the call from Aaron’s aunt. (The preschool director.) At the end of camp, they took Cordy to the front along with the other kids who were leaving at 1:30. She got to watch them leave while she was told she had to remain behind. Today she was the only kid in after-care. Naturally, she had a big meltdown. They were calling to ask me for advice on getting her out of her meltdown. I gave a few tips and hung up, my stomach in knots as I wondered if I’d get another call soon.

Half an hour went by, and I called back to see if she had calmed down. Aaron’s aunt said Cordy and her teacher took a walk to calm her down. I decided at this point to get her early, since it was her first day. When I arrived, they sent someone to find Cordy and her teacher. As they came around the corner, Cordy had a big grin on her face and didn’t seem distressed at the moment.

I hugged Cordy and asked her how her day was. It was then her after-care teacher said, “She is very tired and worn out. Camp is hard on her.” Cordy seemed a little tired, but nothing out of the ordinary to me.

And then the gut punch: “I really think you should pick her up right after camp each day.”

*blink* *blink*

“Well, I can’t do that,” I stammered, “I’ve already paid for her after-care, and I need the time while she’s gone to get things done.”

The teacher was unimpressed. “The camp day is too hard on her. She can’t handle a full day. And she has no other kids to play with.”

I’d like to pause in this conversation to remind everyone: FIRST DAY, PEOPLE!!!

I explained to the teacher that Cordy doesn’t know the routine at the moment, and that once she gets the hang of it she’ll handle transitions better. I also told her Cordy will be in Pre-K in the fall and needs to start transitioning to a full-day program. And I had been told right before they came around the corner that another child would be in after-camp next week.

“Well, we’ll see what happens on Wednesday…” And with that ending, she left.

We’ll see? Or what, she’ll be kicked out of after-camp? Holy hell, it’s only been one day! ONE DAY. Un dia.

Surely other kids act up on the first day of a new program. A child need not be on the spectrum to have a bad day, right? You can’t judge kids by their first day in camp.

I’m completely floored by this teacher’s response to Cordy. Especially since she was the teacher who declared herself some kind of child whisperer that can handle anything. I can’t decide if my mistake was in not telling her enough about what to expect from Cordy, or telling her anything at all and somehow biasing her against Cordy. Was I wrong to mention autism? I feel like we’re being scolded for thinking we could mainstream her. She doesn’t act like a perfect robot child, and so clearly she doesn’t belong here. Send her back to the land of misfit children where she belongs.

And strangely enough, when I spoke with her camp teacher, the report was the complete opposite. Her camp teacher loved her, and said that Cordy had a really good day. She didn’t like circle time singing, preferring to stand away from the group, and she clung to her swim instructor like a barnacle in the pool, but otherwise she had a lot of fun and followed directions. Her teacher was impressed at how she coped with her new schedule.

And that whole talk about being too tired? Cordy did look a little worn out, but she wasn’t sleepy. She didn’t nap the entire day, and was a bundle of energy when we got home.

We’ll see what happens on Wednesday, but I’ll be pissed if I again hear that Cordy should not be in after-camp care. I know my daughter is pretty amazing, and I know she’ll go on to earn many honors, but having the title of “Fastest ejection from a daycare” is an honor I’d rather she not have. Because I then might have to earn the title of “Loudest mother” for shouting HAVE A LITTLE FREAKIN’ PATIENCE! at her teacher. Which is still better than “Mother drinking herself into oblivion” from the stress of it all.

Filed Under: Autism, big issues, Cordy, daily life · Tagged:


Apr 8, 2009

Madeline Spohr

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Today is one of those days I don’t even want to venture outside into the sunshine and face other people. Because how can you explain to them that your eyes are red and you’re fighting back tears because an “online friend who you’ve never met” (yet) has lost her young child?

For those who don’t read The Spohrs are Multiplying, little Maddie passed away unexpectedly last night after being admitted to the hospital for respiratory problems. I know how sick and heartbroken I feel about it, so I can’t imagine the pain that Heather and her husband are going through right now.


Maddie was a preemie who endured several ups and downs throughout her 17 months, yet nearly every photo of her showed a bright, smiling child so incredibly full of life and happy with what she had. It is impossible to look at a photo of Maddie and not smile at her beautiful grin and the mischevous twinkle in her eye. Mira – only a few months older than Maddie – has often pointed and smiled at Maddie’s photos, one of only a few online children that Mira takes an interest in during my blog reading.

It doesn’t matter that Heather is an online friend. Whether we know her in person or only through her writing, her pain is still shared by so many of us, and her loss affects us all. She made so much of her life with Maddie available to us that it’s hard to not feel like they’re next door neighbors.

Hug your children a little tighter today as you remember Maddie and keep her family in your thoughts. The family has asked that any help be in the form of donations to March of Dimes and I’m hoping we can push her walk donations over the $10K mark.

As I mentioned last week, I’ll be walking in the Columbus March of Dimes walk at the end of this month. I’m sad that I have a new reason for my walk, and I’ve added myself to Maddie’s team to help raise more money in her name.

You’ll be missed, Maddie. All my love and strength to your family as they endure this difficult time.

Filed Under: big issues, love, mom blogs ·


Apr 1, 2009

Crossing Interests

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If you’ve been following along on Hot by Blogher, you know that I’m starting to see some real progress in my fitness goals. Muscles are getting stronger, weight is coming off, and I’m feeling pretty good.

Years ago, when I was in better shape, I walked in a 2 mile charity event. Even with being in good shape, my legs ached from the fast paced walking. I was expecting to do the same with the Autism Walk back in October, but it was more like a leisurely 1 mile stroll – not very challenging.

So when I saw Heather’s March for Babies widget the other day while I was also thinking about new ways to work out, it clicked in my head: combine two of my interests into one!

The Columbus March for Babies is April 26, a little less than a month from now. It’s a 5 mile walk and the money raised goes to support the March of Dimes in their goals of reducing the number of premature births and birth defects, and finding new ways to improve the outcomes of preemies.

Now, I don’t think I’ve ever walked 5 miles without stopping. I can barely make it through Level 2 of the 30 Day Shred, and that’s only 20 minutes. But I’m excited to do this walk, and while it’s not a race I still want to push myself to get the best time I can get. My legs are going to ache, but it’ll be a good ache. I think I’m going to love doing this. (I’m excited about exercise? What strange being has possessed me?)

If you’re interested in being a participant in the March for Babies, there are walks going on in hundreds of locations across the US. And if you want to donate, I’m taking donations on my March for Babies page. (I set a low $$ goal due to having less than a month to get going on this!)

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Filed Under: big issues, me me me ·