Halloween Costume Sneak Peak!

Avast, thar thar buckos. We be busy makin' t' finishin' touches on Jackson's Halloween costume 'tis year. I'll gift ye a pair guesses as t' what he's goin' t' be! Although, I be pretty aye ye're only goin' t' need one!

So, 'til we're ready to show off th' complete costume, feel free to take a swim below memory lane 'n check out last year's costumes here.

Spy ya wit' ye eye later....gotta get back to set the sails!

P.S. Thank ye to Post Like a Pirate fer th' English to scurvy pirate translation!

Welcome to Holland?

I guess this is a pretty well-known essay but I hadn't heard about it until a few weeks ago.

In one of the Spina Bifida groups that I'm in on Facebook someone recently posted this essay and I thought I'd share it. "Welcome to Holland" was originally written by Emily Perl Kingsley about raising a child with special needs. I hear that it's given out a lot to new parents of a child with special needs although we never received it.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I'm not entirely sure how I feel about this essay. I like it, but I don't. I think it's a good analogy and has a positive message, but is it entirely accurate? I'm going to have to say no. I honestly think that if I'd been given something like this before Jackson was born, I would've felt resentful for receiving it. It would've ranked right up there with hearing "Everything will be okay". Well-meaning, but not helpful at all. I'm sure it would've been given to me with good intentions, but it would've made me feel like crap for having the feelings I was dealing with at that time. So, I'm actually glad that I didn't read it until now.

While I was looking for more info on this essay, I also stumbled upon another version, or revision if you will, of this and I want to share that too. It was written by Dana Nieder and you can check it out here. I think I like "Amsterdam International" better. It hit home to all of the thoughts that were in my head and the feelings I was dealing with at the time.

For the record: I like living in Holland. It has its perks, like a little boy named Jackson :)

Some Days You'll Never Forget: October 4, 2012

Yesterday was a good day.

Yesterday was our Kirch day. Every six months, we spend the day at Strong Hospital on the 6th floor at the Kirch Developmental Center. Jax gets a renal ultrasound and then spends some time following up with his Developmental Ped. NP (Lorna), his Urologist (Dr. Hulbert) and this time we met his Orthopedist (Dr. Sanders).

The renal ultrasound was routine. Jax has gotten them every six months since he was born. Dr. Hulbert likes to check to see how his kidneys and bladder are growing/functioning as well as keep an eye on his kidney reflux. Jackson had fallen asleep during the ride to Strong and slept right up until the ultrasound started. Surprisingly he was pretty pleasant for having been woken up. Of course, getting the ultrasound meant he needed to be stripped down to his diaper. He's a big fan of being naked and he also enjoys the stars that are projected on the ceiling in the ultrasound room. He decided today that he wanted to help the radiographer. He rolled onto his side for the guy, helped hold the cord of the transducer and even helped moved it around for him. The radiographer said that Jax was the most pleasant helper he had all day. Way to go Jax!

After the ultrasound we made our way from the ground floor to the first floor across the lobby and up to the six floor and waited for our Kirch appointment to begin. Luckily it didn't take too long in the waiting room. Although we come fully prepared with snacks, drinks, toys, books and whatever is going to keep him happy. We've got this waiting around stuff down to a science. :)

Jackson hanging out in the waiting room

The first doc we saw was Dr. Sanders. He came in with one of his residents and introduced himself and started his initial examination. We had never met Dr. Sanders before. There was no need to at birth because Jax hadn't had any issues with bowed legs or clubbed feet or heel-cord issues. I had been told by some of the other mothers that I would like Dr. Sanders. And I do.

He and his resident (I forgot his name....sorry!) began their examination of Jackson by observing what movement he had in his legs and feet. They then tried to determine what nerve responses he had by stimulating different areas of his legs and feet. They were for the most part talking amongst themselves as Strong is a teaching hospital. They were going over which region of the spine is responsible for which nerve areas and the functionality of each region. At one point in the conversation Dr. Sanders says to his resident, "He should walk" and then starts to move onto another area.

Pause. Did you read that up there? HE SHOULD BE ABLE TO WALK!!!!!!! :)

Jason and I both looked at each other and I'm like, "Wait, back up....did we hear that right?" To which Dr. Sanders repeats, "I see no reason why he shouldn't be able to walk". He actually said it....Jax should be able to walk! He may walk a little slower than normal, but he's got everything he needs to walk. He might need some longer braces to help with stability. And there's still a possibility that he once he's older that using a wheelchair for longer distances may be easier for him. But, he should be able to walk on his own. Not exactly sure when it will happen, but it should. That's all we need to know.

We've been waiting since January 7, 2011 to find out if Jax would be able to walk or not. All along it's been, wait and see. Or, maybe. Or, it's a possibility. Or, it's too soon to know for sure. Never yes, never no. This time, it was a yes! I almost started crying tears of joy right then and there. But I kept my cool and let them continue.

Dr. Sanders wanted to get x-rays of both his spine and his hips to see if he has scoliosis or any other spinal issues and also to see if there were any issues with his hips. So back down to radiology we went. It took a little while for the x-ray orders to show up in the system, so we chatted it up with the people in radiology reception while we waited. Jax batted his eyes and smiled at just the right moments as he usually does. What a ham!

Finally everything was set and we made our way to x-ray. Jax didn't find x-rays to be as fun as the ultrasound. The main reason being he had to lie still and not move. Actually be held down. If you know Jax you know that he hate his arms being held down. So little wiggle-worm gave the x-ray techs a run for their money. Finally finished and headed back across the hospital and up to Kirch.

Dr. Sanders came back in and took a look at the x-rays. He did notice a bit of scoliosis present. However, he said it wasn't bad enough as to where it would effect him at this time. He also said that it might not even be scoliosis and that the curvature could be attributed to Jax moving during the x-ray. He wants to follow up again in three to four months with another set of x-rays just to be certain. Jax's hips look great though!

Next Lorna came in along with Angela, one of the social workers on staff. We had a conversation on how Jax has been doing the past six months. A review of the services he gets now, how he's developing, what issues we are encountering, etc. The only real issue we brought up was constipation and she agreed that the Miralax is probably the best option at this point. We've been using it since Jax's regular 15-month check-up and have had great results with it.

At one point we brought up what other therapies may be useful to Jax and horseback riding and water therapy were brought up as options. Jason wasn't a huge fan of the horseback riding suggestion as he's not too fond of horses. However, it would be great for trunk control. Lorna even joked around that she expected to see a picture of Jax on a horse the next time he comes in for a visit. I think that can be arranged. We're also going to try to see if we can get our insurance to cover a membership to the Y so we can use the pool for some water therapy. It's a long shot and I have had many run-ins with the insurance company so I'm not going to count on them covering the cost of the membership. I think we may just pay out of pocket though. It will be good for all of us.

We never did end up seeing Dr. Hulbert. To be honest, we technically haven't even met him yet. I've talked to him on the phone, but never in person. Lorna said she'd follow up with him regarding the ultrasound and one of them would call us if there were any issues.

We heard, "he looks great, you're doing a great job, just keep doing what you are doing" a lot today from everyone. I like hearing that. Not as much as I like hearing that Jax should be able to walk, but it still felt good. ;)

Our next follow up with Kirch will probably be in another six months.
October 4, 2012 - An awesome day. The day we were told Jax would walk.

Check ya later. :)

Some Days You'll Never Forget: January 7, 2011

There are some days in a person's life that they never forget. They could be personal like your wedding day, the day your child was born or the day someone died. They could be "where were you when [this] happened" days like September 11th. These days could have something to do with famous people/events/things.

For us, one of "those" days was January 7, 2011 - the day we found out Jackson had Spina Bifida. It was a Friday.

I was 19 weeks pregnant and had just gotten blood work done for the 2nd trimester screening. I had had a "normal" pregnancy. No morning sickness, felt great, no spotting, everything seemed hunky dory. When our OB/GYN had brought up the 2nd trimester screening as an option we didn't think anything of it. There was nothing wrong, but what's the harm in confirming that, right? Sure doc, let's do it. We were told "no news was good news". If we didn't hear from them, then the results were all good.

And then my phone rang.......

In a blur, I remember Dr. Page telling me that the results came back positive for Spina Bifida. What!? There isn't a family history of it and I had been taking prenatal vitamins. He said even though the test came back positive, it didn't mean that Baby Smith had SB. It just meant that there was a greater chance that Baby Smith had developed it. {I say Baby Smith b/c at the time we didn't know gender}.

Next step, schedule an ultrasound/genetics appt. with Strong Perinatal Associates (SPA), the specialists, to confirm. I learned all of this over the phone. At work. I was freaking out. Would've it been better to have learned in his office? Probably not. He would've called and said to come in and that would've freaked me out too. Either way, unexpected and unsettling news.

But now I had to tell Jason. He always was nervous about having a child because of the "what-ifs". What if our child is disabled? What if something bad happens during delivery? What if.....our child has Spina Bifida? I told him what was going on and we went to the appointment. I didn't tell anyone else what was going on. Why have everyone worry if there was not needed, right? It was just an increased chance of having a child with Spina Bifida, not a diagnosis. That's what the doc said.

January 7th, 2011 - our "D" day....Diagnosis Day. Our appointment with SPA.

We first met with Stephanie, a genetic counselor at SPA. She went through our family histories, explained the test results and gave an overview of what Spina Bifida was - the who, what, where, how and why's of it all. We had heard of SB as someone we went to high school with has it, but other than that we didn't know much. It was nice to get that explanation. Our results showed a 5% chance of having a child with Spina Bifida. 5%, that's it? That means that there a 95% chance that Baby Smith is just fine! That's pretty good odds, right?

Wrong. But we didn't find out just then. Our appointment with Stephanie was right before lunch. Their office closes for lunch from 12 - 1. We were told to go grab some lunch and then come back for the ultrasound. The ultrasound will either confirm the diagnosis or show us that everything is fine. You've got to be kidding me!! We've been worrying about this all week and now we have to wait some more. We went to lunch at Wegmans thinking "it's okay - chances are Baby Smith is just fine".

Included in all of the info that Stephanie had given us prior to the ultrasound were signs of what the techs/doctors would be looking for during the ultrasound. Terms like "lemon sign" were thrown out there and descriptions like a break in the "railroad tracks" of the spine were used. Then it happened. We both saw it. It was right there on the screen. The tech isn't supposed to say anything but we knew before the doctor came back in. Spina Bifida.

I don't even know how to begin describing what I was feeling at this point. Shock, guilt, disbelief, worry, anger, sadness. It was all there plus a lot more. Coincidentally, we also found out that Baby Smith was a BOY! So mixed in was a little happiness, but not much. The gender reveal was definitely overshadowed by the diagnosis.

It took a while for the doctor to come back in, so it was just Jason and I in the room. Alone together with our thoughts. We distracted ourselves with baby names. I had already told him that I wanted Timothy to be Baby Smith's middle name if baby was a boy. My parents only had girls so there was no one to carry on the family name unless my youngest sister became an unmarried spinster. And that's not likely to happen and Amanda and I are already married. I also pointed out that we got married on his parent's/grandparent's anniversary so we needed a little "King tradition" involved in our lives. And no offense to my parents, but King just wasn't going to work. Timothy, after my dad, was much better :) Secretly, I had liked the name Jackson for a long time. It didn't take too much to convince him that our little man was going to be Jackson Timothy.

Jason did however push for Bob. The smart ass that he is said that Bob was a good name and if our kid was dyslexic that he'd still be able to spell his name. Bob was never in the running......

So Baby Smith is now Jackson Timothy Smith and he has Spina Bifida.

We're trying to be positive, but it's not working that well. The doctor comes back in and officially confirms the diagnosis. He begins talking about what will happen during the rest of the pregnancy, how delivery will be handled, what happens after the baby is delivered, prognosis, expectations, living with SB, surgeries, Hydrocephalus, shunts, braces, therapies, learning disabilities, specialists, worst case scenarios...way too much for me to comprehend. We're still trying to take in the diagnosis.

He also mentions our options....continue or terminate the pregnancy. I know he mentions them because he has to. But we just found out we're having a boy. He already has a name. Termination was not an option. It never was an option. Before going into the appointment, we had both agreed that no matter what termination was not an option. We've loved this baby since the day we found out we were pregnant. How could we terminate just because he had SB? People live with SB every day.

We went back in to Stephanie's office and talked a little more about what we just learned. She was quick to point out that it wasn't anything we did and sometimes it just happens. And then I started bawling. I had been thinking for a week now that this was all my fault. From the time between the phone call and the appointment, I had been looking up SB on the web. {Side note: Don't do this! It's never a good idea to Google stuff like this! Trust me. Look for SB groups or something. Anything but Google.} There is no known cause of SB but there is a link between the lack of folic acid in the mother and SB in the baby. If only I had taken more folic acid before I got pregnant. Maybe that would've changed the outcome. Immense guilt flooded over me. No matter how much she tried to say it wasn't my fault, I felt like it was. I still do. That feeling never goes away.

She gave us some info that we could share with our families. Oh man, now we have to tell our families. We're still trying to process this ourselves and we need to tell them what's going on. We have no doubt that they will be supportive, but still. Just as hard as it is to hear this information, it's just as hard to tell others about it. Not because we were ashamed or embarrassed by it, just that there was (and is) so much uncertainty that goes along with it. No one in our family had ever gone through this. None of our friends. This was a new frontier. Many questions were unanswered at this point.

We left the office and headed home still shell-shocked and stunned. It was a long ride home. Personally, one of the longest hours of my life. I cried the whole way home. I just wanted to get home, curl up on the couch and sleep the rest of this day away. Not that it would change anything. We kept the info to ourselves until Sunday evening and then we told our parents. As expected they were very supportive (and still are) and also excited to learn that Baby Smith was Baby Boy Smith to be named Jackson Timothy. They took care of spreading the word to the rest of our family who were also and still are very supportive. I only told a couple of friends at first. I didn't even mention it on FB until the day before he was born. Again, not because I was ashamed. I just didn't want to talk about it. A little denial going on I guess. I had no answers to give people. I didn't want people to feel sorry for us.

I heard a lot of "everything will be okay" and "God doesn't give you what you cannot handle". I know it was supposed to help calm my fears and make me feel better, but it didn't. There were some "Why Me?" feelings going on. Which then made me feel guilty. How dare I think like that?

I don't remember exactly when it happened, but one day I just accepted it. It is what it is. I had begun telling people that if he needed a wheelchair then it was going to be one bad-ass, pimped out wheelchair. And instead of just saying it, I actually meant it. Because, the truth is it didn't matter whether or not he would be able to walk or whether or not he would have learning disabilities or issues with bladder/bowels or whatever....he was still going to be our little boy and we were so blessed to have him.

The fear of the unknown is still there. It probably always will be. But I was determined to not let that ruin the rest of my pregnancy. Because to be honest, Jax may be an only child. The fear comes back into play here. What if we have another child and it happens again? What if Jax requires more attention and the second child doesn't get as much as he should? What if....? I know.....you can't live based on "what ifs". But it's not as easy as you think.

Fast-forward to the present and I can't believe that termination was ever presented as an option. He was meant to live and we were meant to be his parents. To know Jax is not to know him as a kiddo with SB, but as a very cute, happy, healthy social butterfly who loves to snuggle, throw balls and splash in the water. Sure, he has more doctor's appointments than some kids and gets therapy 5 times a week, but he's still Jax. He may not be walking or sitting completely on his own yet, but he's still Jax. He is the best baby that we could've asked for. Reason #2 that he may be an only child: Jason is convinced that because Jackson is such a good baby (easy-going, sleeps through the night, happy 95% of the time) that a second child would be a terror. Whatevs Jason. Some day I'll change your mind. :)

It's a Family Tradition!

September 30th is an important date to us Smiths.

On that date 69 years ago, Jason's grandparents (Jack and Gladys Smith) got married.....
On that date 40 years ago, Jason's parents (Ken and Pam Smith) got married.....
And, on that date 5 years ago, Jason and I got married.

That's right, three generations of Smiths have gotten married on September 30th. How awesome is that? No pressure Jackson, but you could keep the tradition alive and make it four generations. LOL.

When we first started talking about getting married Jason suggested that we carry on the tradition and get married on his parent's/grandparent's anniversary. This prompted a pop quiz and although he'll tell it differently, he said they were married on Oct. 1st. So, in the late night/early morning after our friend Monica's wedding Jason called his Mom to confirm their actual anniversary (I was right, btw). Date set and the rest is history :)

I can't believe that it's been 5 years already. This is a 5 year anniversary for a lot of things. Our wedding, buying our house, me starting at Global Crossing/Level 3, Jason starting at the NYSDOT, Jason buying the truck he has now.....man, we were busy that year!

I struggled with what to get Jason this year for an anniversary gift. Anything that he needs, he buys and anything he wants is way out of my budget. As much as I'd love to buy him a set of ape-hangers for his bike or pay for a new paint job for his truck, it just wasn't feasible. I decided to peruse Pinterest (of course) to look for ideas. I came across an awesome website for date ideas and decided on a sort of "Date of the Month" type of thing. Basically, I have two dates a month planned for the next year. Twelve of those dates are all related and part of one big "Passport Date" theme. The rest are just cool ideas that I saw and wanted to do. We have date nights now, they just usually consist of us hanging out at home, without Jackson, watching movies. Don't get me wrong, I love that. But I thought I'd bring a little adventure back and have some fun. And for the most part, inexpensive fun.

I'd love to give you more details, but these are surprise dates. Jason knows we will have two "special" dates each month, but nothing more. No details, no nothing. I know from time to time that he actually does read my blog, especially if he's bored. So, if I give you the details, he'll have them too. And I can't let that happen ;) I'll fill you in on our dates after they happen.

To celebrate our anniversary, we went on a little impromptu getaway...on overnight in Syracuse. For the record, Staybridge Suites is a pretty awesome hotel chain. The rooms were very nice and the complimentary breakfast was sweet! We're not talking toast and cereal here people, actual breakfast. We were going to go out to dinner somewhere but decided that we ought to continue our hotel-staying tradition. That's right, another tradition. This one dates back to our honeymoon. We ask the hotel peeps where the best pizza place is and then grab some pizza and wings and veg out in the hotel room. I know, kinda lame that we spent our night away hanging out in a hotel room eating pizza and wings, drinking beer and watching tv but for us, it was great! No kiddo, no dog, no housework, no yard work, no laundry, no nothing. Can we say "heaven"! We took the long way home and just had a good time hanging out with each other.

Forgot the camera so this is the only pic I took (with my cell)

So here's to 5 years, 40 years, and what would've been 69 years, of wedded bliss!

Another Smith Family Blog

I started this blog as a way to keep family and friends, near and far, up-to-speed on what was going on with Jackson. Jackson was born with Spina Bifida and Hydrocephalus. When he was born, he had to have surgery to close the lesion on his back and then had a follow-up a month later for his shunt placement. My goal was to make sure everyone got an updateon how things were going and what better way to mass-update then the good ole interweb ;) And since everyone isn't on FB (WHAT!?!), I figured that a blog would be the next best thing.

Since then, the blog has morphed into a plethora of stuff ranging from date nights, favorite recipes (okay, haven't posted any recipes yet, but they are in the works), our dog, our house, my awesome hubby, projects from Pinterest that I actually complete, SB awareness and what's going on in Jackson's world. I'll be honest, it's 73% about Jackson and raising a child with SB, at least according to my last calculation. Oh, and pictures. Lots of pictures.

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Some Days You'll Never Forget: October 4, 2012

Some Days You'll Never Forget: January 7, 2011

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