Late Review: Children's Museum of Phoenix

Just after Thanksgiving, Travis and I made the trek on our own to the Children's Museum in downtown Phoenix. Without anyone else with us, I was a little nervous about how I would manage chasing a rambunctious tot around in a place I'd never been. Our experience was nothing short of incredible, and I'm only sad we hadn't ever been before and that we haven't had a chance to go back since. From their website: Accessibility The Children’s Museum of Phoenix is an all-inclusive environment providing barrier free access for visitors. Signage is bi-lingual and in Braille, staff is multi-lingual, books and printed resources are available in many languages, and music, dance and art programs all reflect multiple cultures. Service animals are welcome in the Museum. Wheelchairs and ASL translators are available with advance notice upon request by calling our main number at 602.253.0501 and pressing zero.

 AzTAP Department of Services for Persons with Disabilities conducted an accessibility evaluation in August 2008 and summarized, “the Children’s Museum of Phoenix is the most exceptionally disability-aware arts institution this evaluator has ever surveyed.

And I would wholeheartedly agree with that statement. When we first walked in, the staff greeted us warmly. I mentioned casually that I was nervous in case Travis ran where I couldn't reach him, if we needed help, etc. The staffer assured me that any of the staffers, easily identified by their green polo shirts, would be more than happy to help me in any way that I needed. I was reassured, and then we turned the corner and were suddenly at the bottom of a huge climbing structure. For a brief moment, my heart sunk. If the rest of museum was going to be a huge jungle gym to climb on, I wouldn't be able to participate and play with Travis, who was so excited to run around, he could barely sit still on my lap.

Photo courtesy East Valley Tribune

There wasn't really anything else on the first floor beyond the giant climber and the gift shop, so we found an elevator and headed upstairs. As the elevator doors opened, we found a Noodle Forest ahead of us. Pool/foam noodles of all sizes, suspended from the ceiling, children giggling as they ran through again and again. Though he was a little hesitant at first, Travis warmed up to it by the end of the day, and we enjoyed plowing through it again and again. Since none of the noodles touch the ground, there was little in my way, just a matter of pushing the foam to the side as I pushed my way through. From the outside, it doesn't look like anything I would have been able to participate in. Sometimes you just have to try something anyway.

 We wandered through rooms set up like mini grocery stores, restaurants, played with new textures and sounds, and I chased Travis all over that floor. The biggest challenge we faced was hitting the bathroom. He doesn't quite grasp the idea of not touching everything or not crawling out under the stall doors. The next challenge? Getting him to LEAVE the bathroom. He'd have stayed at the toddler sized sink all day, washing his hands, if I'd let him.

 Just when I thought we'd experienced all the museum had to offer us, I found "The Place For Threes and Younger". Soft blocks, short tunnels, board books, toddler sized toys, and climbing gyms just the right size - for BOTH of us. Imagine my excitement when I could still hold his hand as he was at the top of the slide and coming down! As he crossed a fun, wobbly bridge! Everything about this area was easy for both of us to use, and the staffer assigned to the exhibit on this day was so welcoming and friendly. We had a blast. It was quieter in this room than in many of the others, and I felt much more comfortable just letting him run around with the few kids his own age, not worried about older kids, and I was able to put the diaper bag down, relax and enjoy watching him just have fun on his own.

The house we're hoping to rent (more on that soon!) will be just a short 15 minute drive to the Children's Museum, so I'll officially be putting a membership on Travis's birthday wish list. If you haven't yet been to the Phoenix Children's Museum, PLEASE go. If you happen to be a parent with a disability - or a parent of a child WITH a disability - PLEASE GO. Rest assured that help will be there for you if you need it, and you and your little ones will have a great time in one of the most inclusive places I've ever been.

I know. I know. I KNOW.

I'm way behind on posting. I have things I want to share, I do. Everyone in the house is sick. Travis got sick Christmas Eve, and I got it two days later. He and I are better, but my mom came home from spending Christmas with my brother with bronchitis. Just as she was getting better, my step-dad caught a bad cold. Now SHE has the cold and Matt's starting to feel sick. GAHHH!! Anyway, after I vented about having to move, we decided we would see if we could make it work. Just when things were starting to look up, we were notified today that our landlord intends to sell the house at the end of our lease. So, back to the drawing board, we're moving after all. I'm exhausted (Travis and I have been up since 5:30 this morning), I'm PMSing, and I'm frustrated. I have the best intentions to keep this blog going and start posting more, but in the meantime, I'm going to have lunch and take a nap and pretend Monday is over.

Where were you 20 years ago?

Twenty years ago, I was a 12 year old. A sixth grader at East Middle School in Plymouth, MI.

Twenty years ago, my oldest niece was just 5 months old. She was just starting to crawl.

Twenty years ago, Whitney Houston's cover of "I Will Always Love You" was #1 on the Billboard Hot 100. For fun, #3 was "Rump Shaker".

Twenty years ago yesterday, it was a Saturday, and there was nothing weird in my life whatsoever. Except my brothers.

Twenty years ago today, I was suddenly paralyzed. (missed the post on that?)

Every year, as December 20th approaches, I always feel sort of odd. Its always been just a normal pre-Christmas day, but with this little gray raincloud in my head. Not that I've always been sad or depressed about it, rarely is that the case, but it just has that somber sense of importance; like a holiday that nobody gets the day off for. You know something happened, and it was important enough, but the only people who take note are the people who were affected.

That was a horribly stupid analogy. Sorry.

When I was first paralyzed, the doctors told me that if after six months, I wasn't walking "like normal", I never would again. I never really let that bother me, because long after six months had passed, even in more recent years, I've had changes in sensation or movement or strength. You just don't say "never", because how could they ever know "never" is a certainty? They don't.

But, twenty years have passed now, and I can't help but hear that "never" knocking around in my head, with an image of my old neurologist, Dr. Nelson, wearing a sour "I told you so" face.  When I was 16, ON my birthday, I went into her office for an annual check up. I grabbed her desk, stood up and beamed. She sat there, smug, and said that it didn't mean anything. Well, maybe it didn't mean anything to her, but it meant something to me. I never saw her again after that. And she sucks, so I don't ever want to think about her again. Ever.

Just after Thanksgiving, I turned 32. It seems so strange when I think about the fact that I've been in a wheelchair longer than I was ever not in one.  Maybe the time of year, and the 20th anniversary is why the whole house-hunt seems to be hitting me so much harder.  Maybe it has nothing to do with it.

This post doesn't really have a point, mostly just reflection, I guess.  If I could change things, if I could go back 20 years ago and have it never happen, would I? That's the loaded question. I think there are a lot of things in my life that wouldn't have ever happened if I'd not been paralyzed. I'm pretty well certain that Matt and I wouldn't have met, which means Travis wouldn't be here either. There are people I'd have never had in my life, experiences I wouldn't trade, so no, I probably wouldn't change it. I might change some other things that might make things a little easier for my future-self, but it is what it is. I still believe that God doesn't give us more than we can handle. So I guess I just keep on handling things the way I have been for 20 years. I've made it this far, anyway.

The NICU: Part Three - Coming Home

My first Mother's Day was not the way you think a first Mother's Day should go. There was no champagne brunch, no flowers, no extra cuddles. We came home from the NICU exhausted, napped most of the afternoon away, and then went back to the NICU. We clung tightly to the notion that very soon, within the next few days, Travis would be coming home with us, but we still didn't know exactly when.

Monday, Mom and I went to lunch before heading up to the hospital, and I was on edge, checking my phone every ten seconds, in case the hospital called to say "Today is the day!" They did not, but we came home Monday night knowing that Tuesday would be the day Travis would finally come home.

I'm not really sure how we got any sleep that night. We arrived at the NICU Tuesday, mid-morning, and discovered that Travis wasn't where we left him Monday night.When Travis was born, he was in the "E" room, all the way on the far end. As far as I could ever tell, that was one of the two rooms with the babies who needed the most care. About 10 days after he was born, he was moved to the "B" room, which was much closer to the door and a lot less restrictive. Now, on the day he was coming home, he was back in the "E" room. For a moment, I was nervous. Had something happened in the night? Were we not taking him home after all?

Thankfully, it turned out to be a space issue. Someone else needed the "B" room, and since he was only going to be in the NICU a short time that day, Travis was moved where there was room for him. Thank goodness. We changed him into his coming home outfit and then...we waited. The nurses and doctors were going through their morning meeting, notes on all the patients. In the meantime, a few nurses emptied the freezer of my breast milk stash. I don't know why, to this day, I felt embarrassed by how much there was in that freezer. It took up almost the entire little red wagon. It would have filled it, but that's where the car seat had to go for our walk-out.  After what seemed like ages, we signed a few pieces of paper and were walked out of the hospital. FINALLY.

I'm sure I'm not the first person to notice how bumpy every road seems to be, until there is a newborn in the car, right?

I feel sad to say that a lot of his first few weeks are kind of a blur. I remember bits and pieces. Unnecessary diaper changes, totally overdressing the baby. Sleeping the first few days with the bedroom fan off, the A/C set warmer than we were used to and, believe it or not, with the light on. All we knew was that it was a comfortable, consistent 78 in the NICU and it never seemed to be very dark. We didn't know better, we just wanted to make our home HIS home, and make him as comfortable as he seemed to be in the NICU. We got over that phase within the first week, we were tired and it was already hot.

NICU parents are given a lot of instructions when leaving the hospital. We were lucky that the only things Travis had to deal with when we came home was a stuffy nose and prescription nose drops and the (very expensive) formula that he was still on. No equipment or major health issues, we were (and are!) very blessed. Something else that the NICU staff recommends is to limit travel. With any newborn, but with preemies especially. With RSV, whooping cough, colds, flus and you name it, limiting exposure to germs is pretty important. Some parents are urged to not travel anywhere for a year. The only trips out of the house Travis made in his first month home were trips to the pediatrician for more frequent-than-normal checkups. Matt or Mom would go grocery shopping at first, since I wasn't cleared to drive until about 8 weeks after delivery. Socializing was cut down to nothing. If you invited me somewhere, I'm sorry, but I'm staying home with my son. I spent too long just trying to get him BORN safely, then long enough with him living somewhere else, to just up and leave, and I wasn't about to bring him out to a noisy shop, restaurant or bar. What kind of parent does that? And a friend who would expect someone to do this is not a friend at all.

Travis was home for a month before I was able to start nursing. That was hard. The formula he was on was very expensive and only sold by the case. At $140 per case, it was really digging into our budget. There was a reason I had hoped to breastfeed: beyond the many health benefits, formula is expensive, and the only one he'd been able to tolerate was more than double the cost per can than the store-bought stuff. It still hurt to know that the ONLY thing I'd felt able to provide for him - breast milk - this whole time, when he was in the NICU, when he came home - was something he couldn't have. Around 4 weeks after bringing him home, we had our first visit from the Neonatal Intensive Care Program nurse. The NICP is a program offered in the state of Arizona for any child who spends more than 2 weeks in the NICU. The nurse helps with the transition from the NICU to home, and helps track infants in a number of areas (growth/health, development, etc) to make sure things are going well, and if not, to refer the parents to the proper care.


Our nurse, Jackie, is amazing. She's also a certified lactation consultant, and she helped me immensely. Her first visit was on a Friday. By Monday, Travis was nursing exclusively. No more $140 cases of formula! Which was great, because around this time, he started eating a LOT more. We'd have been going through multiple cases per week, and our insurance only reimbursed us for approximately ONE CAN. Gee. Thanks.  Travis doesn't see Jackie very much anymore, but he knows her by name and loves when she comes over "to play". She was really a Godsend, and it was great to have someone to call on when I had a quick question, without feeling like I was driving my pediatrician up the wall.

I would say it took all summer to really feel like we'd gotten into a good, regular groove with Travis.  By the end of July, he was tipping the scales at almost 11lbs. I'd had to figure out how to carry Travis on my lap or in my arms and still push my chair around one handed. Until he was able to sit up on his own, it took me a good while to get that under control. If I went anywhere with him on my own, even to the mailbox, it meant putting him in his car seat, then on his stroller. Sometimes, that was the only way I could even get to the bathroom. He didn't much appreciate being left in a room alone for a potty break. He still seems to think he has to help me in the bathroom, but at least he's already learned that we ALWAYS wash our hands after we go potty, lol.

We learned that he loved Elvis and most of the pop/rock from the 50's. He hated classical music. He loved to cuddle and loved his bath. He was generally a happy baby, and we were certainly enjoying every second of every day. More than anything, Matt and I were just thrilled to finally feel like a family, when "touch time" was whenever WE wanted to. When looking into his crib meant only sitting up in my own bed. When he was home.

On the move. Again.

A few months after Travis was born, my mom and step-dad moved from Michigan out to Arizona. Mom wanted to be close by to help with Travis when we needed her (and boy did we need her, thanks Mom!) After living in our Scottsdale apartment for almost five years, we were ready to move, and we decided to all move in together as one large household. Seemed like a way for everyone to save a little, to be more available to help out. We started house hunting, with an unusual set of parameters - it needed to be big enough for all of us, which meant 4 bedrooms at least, it needed to have something at least a little like a second master bedroom, it needed to have a little separation of some kind, and most importantly, it needed to be accessible.

There were a few houses that fit almost every aspect. One, not too far from where we lived at that time, was a nice decrease in rent, had a separate apartment built where the garage once had been, with a kitchenette and a separate entrance. But it wasn't accessible. Not even close, and the homeowner was not willing to allow us to make changes to the house. (we have since learned that they HAVE to allow us to make changes, but well, you know what they say about hindsight.)

After two months, I was frustrated. You drive out to house after house after house, walk in, love everything you see, and can't get into the bathrooms. Eventually, we started checking the bathrooms before even looking at the rest of the house. Listings that were flagged "disability features" usually were wrong; that can mean anything from fully handicap accessible to just simply a single story home. Rarely do I feel dragged down my by disability, but by this point, I felt defeated.  My mom, when she was in real estate, sometimes had buyers who spent months looking for the "perfect" home,  with problems like "that kitchen is too small" or "but I don't want a carport" or "the feng shui just isn't right here". I know a lot of my own friends who have had lengthy searches for houses to rent or to buy, but sorry, I'm not about to feel any sympathy. You can bitch up and down about not finding a house you LIKE, but talk to me when you find houses with bathrooms and closets that are completely off limits to you. The bathrooms may as well have four solid walls with no doors and no way in.   Let me tell you, it sucks, a lot.

Finally, we found our needle in a haystack. The owners of the home have a son in a wheelchair, and so much of the house was accessible. Sure, some of the doors are snug, I've smashed my fingers a number of times,  but I still fit. There's a separate suite with a bath and a half for Mom, with a front and back door, plus the garage. It was a little higher than our hoped-for price, but considering that it fit everything else, we figured we would make it work, and we moved in at the end of February (well, everyone else moved. i rested, having a horrible case of pneumonia, and more than a week of temperatures over 103.)

And now, 10 months later, we're likely moving again. The household, it would seem, just doesn't appear to be functioning together the way it should. Nobody helps each other. Everybody points the finger at everyone else. Nobody accepts any responsibility for anything. A lot of "pot calling the kettle black" situations. Mom and my step-dad found a place to rent, and Matt and I have started apartment hunting again. We won't bother looking for another house; I just don't have it in me to waste another two months, and over the holidays again. To be honest, I'm still a little resentful about the situation and the fact that I have to move again. Its not the apartment hunting or the packing or the unpacking or the cleaning that bothers me. Its that I feel like nobody seems to understand what it all means.

To Matt, it's the annoyance of packing and all that other stuff I just said, but also having his own space a little more like he's used to.
To Mom and Jim, it's having more space, feeling more able to spread out and be comfortable.
To me, it means I lose.

This house is practically perfect. Hardwood floors almost throughout, mean that I don't wear down the carpet or wear out my shoulders pushing through padding.  Doors I can get through mean none of the spaces I need are off limits to me. Lots of cabinets and built in shelves/storage mean that the things I want to access quickly - my pantry, my books, etc - are all easy for me to get to. Everyone else gets what they want, and I get to give up that feeling of freedom and independence that this house has afforded me where other apartments have fallen short.

It doesn't help matters much that, when apartment hunting, we still have to be so specific. Because of the ADA laws, any building built after 1990 has to be accessible. Great, but that doesn't mean it has to be available, does it? We've found two apartments we like quite a lot. Trouble is, they don't have a three bedroom available yet. Or if they do, its on the second or third floor. I lose again.  If you run an apartment search in Mesa (with a 10 mile radius) for our preferred rent/bedrooms, you come up with somewhere around 350 communities. If you add in "accessible" as a feature, it cuts down to 37.  The same search for houses for rent comes up with about 170 homes. Add in "single story", it brings it down to 120 homes. Add in "disability features" (which again, is very vague), and that number whittles down to exactly ZERO. Where am I supposed to live?

I'm sure you're thinking I'm being overly dramatic, but I can't help the way I feel. I'm the only one who still thinks the house situation can work IF the other people in the house pitch in more and everyone stops bitching at each other.  I don't want to lose the house we worked so freaking hard to find, because to me, it is much more than a house.

Whoops

I bet you thought I forgot this blog existed :)

Holidays. Gotta love 'em, right? My last post was the day before we drove to New Mexico. We left on Wednesday, drove home on Saturday, arrived home around 11pm Saturday night. We were out all day Sunday (and happy birthday to Matt and me!). Monday, Matt started working an event in downtown Phoenix, so Travis and I stayed at the hotel with him Monday and Tuesday. Wednesday was just plain busy, Thursday was trying to get Travis back on some sort of schedule. Matt was home Friday-Sunday. We were out all day yesterday, and that brings us to today, except only just, because I only had time enough to post just this short "hello!"

I will be finishing up the NICU - Coming Home post, hopefully this week, and getting that published, and I have LOTS to say about Thanksgiving and our visit to the Phoenix Children's Museum, so please stay tuned!

Happy Thanksgiving!

Happy Thanksgiving! I hope you get to enjoy it with the people you love the most! I am working on the NICU: Coming Home post, or at least, I'm trying to, Travis has been a little nap resistant lately, and with all the stuff we've had going on, its been hard to get it typed out!

Time to get back to packing! Happy Thanksgiving!