Bittersweet

bit·ter·sweet
   [adj. bit-er-sweet, bit-er-sweet; n. bit-er-sweet]
–adjective
1. both pleasant and painful or regretful: a bittersweet memory.

My life as a mom has become a constant stream of bittersweet moments. Initially these moments would catch me completely off guard. These moments would knock me off my feet, they would literally take my breath away. Now they have become an all to familiar occurrence, these moments rush by like familiar friends. I despise the bitterness but just as I start to pray to never have to experience it again I'm overcome by the sweetness.

Sanfilippo syndrome has woven itself into our lives. Peter is 2 1/2, Olivia was 2 1/2 when she was diagnosed. Over the course of the last 6 months I've watched Peter surpass Olivia in so many ways. We know several families who have multiple children with Sanfilippo syndrome. I cannot imagine how difficult it would be to watch both children slip away. We know other families who have multiple children but only one or two of their children are affected. I know that they feel that their non-affected children are able to give their child with Sanfilippo syndrome a voice. I hope that I get to that point but right now I'm stuck in this never-ending cycle of the pleasant and the painful. Sometimes I can see Olivia beginning to slip away into her own seperate world. I don't know what I would do if Peter had Sanfilippo syndrome as well but I wonder if it would be comforting to know that Olivia wasn't quite so alone. Peter is starting to struggle to find ways to interact with Olivia. He's not able to understand that she just can't quite keep up.

Olivia began speech therapy before her 2nd birthday. I was there every single time she learned a new word. every. single. time. It was a group effort. I helped my baby girl find her voice. Those words were hard won. They were precious. I also watched those words slip away, Olivia lost her voice. On a daily basis I hear Peter add new words to his ever growing vocabulary. Words I didn't teach him, words he just picks up on his own. Words I remember teaching Olivia, words I remember helping Olivia to learn over the course of several months, Peter adds to his conversation effortlessly. Overwhelmingly bitter and sweet at the same time.

We taught Olivia how to use a spoon, it took months. It was a messy business at first but we got there. It was a family effort. I remember the day Mike took a video of Olivia eating her cereal all by herself. We didn't teach Peter any of this, one day he just took the spoon out of my hand and fed himself. It was effortless. Now Peter insists on using a fork and a spoon. He feeds himself neatly (even if he does eat katsup by the spoonful), when he's finished he takes his plate to the sink. Olivia requires constant supervision when she's eating. If she's not flinging the food all over the place then she's cramming too much in her mouth. If Olivia happens to grab a spoon she waves it around and bangs the table. I bought a brand new package of infant spoons last week. Bitter and sweet.

Tonight Mike was putting Peter down while I was sitting with Olivia during her breathing treatment. Peter came out to for his goodnight kiss and hug. Instead of telling me goodnight he said "buenos noches" (goodnight in Spanish). All the ideas of having a multilingual child came rushing back. Olivia and I would watch a cartoon in Spanish once a week, she had Spanish flashcards and board books in Spanish. But when Olivia was having trouble mastering English I adjusted my expectations. I haven't tried to teach Peter any words in Spanish. Peter's growing Spanish vocabulary is growing naturally, through occasional words and phrases from Mike (and Dora and Diego). Bitter and sweet.

We spent one weekend potty training Peter. We spent months working on it with Olivia just to have our hard work slip away. I've probably changed 3 times more of Olivia's poopy diapers than I have of Peter's. Peter is really into the concept of "big" and "little" lately. He arranges his trains in order of size, he eats the big grapes first, he shares the small half of the cookie with Olivia. He was so proud to announce that Olivia is her "big sister". I remember when I was pregnant with Olivia and she was so excited to be a "big sister", now she's oblivious. Every single potty training book we picked out talked about babies wearing diapers and "big kids" wearing underwear. Peter is now a little confused about why I'm changing his Big Sister's diapers.

Sometimes I resent Peter just a bit, things just seem to come so easily for him. The very same things that I worked so hard to teach Olivia. I wonder if Olivia had not been my oldest child, if I would have known something was amiss sooner. She did meet all of her early developmental milestones but we got there together, it was a process, they were not just mastered overnight the way Peter seems to tackle them. I absolutely value Olivia's words more. Thomas Jefferson said that anything worth having was worth fighting for and we fought for the words, the skills. I'm bitter that they are gone and that Peter seems to master them so easily. Of course I am still able to appreciate the sweetness that is my darling boy but often Olivia's beautiful smile is still the sweetest treasure. Her smiling face doesn't quite erase all the bitterness but it does soften the blow a bit.

Stay-cation

We casually debated our summer vacation plans for months....beach, Orlando, a trip with friends, camping. We have traveled a lot lately and decided we weren't really up for a big trip. With our move coming we also didn't want to spend a lot of money on a vacation so we staycationed this year. Mike's schedule didn't permit him to take off work for an extended period of time but he was able to squeeze in an entire week off even if it did end up being a Tuesday to Tuesday week. (I just have to say, gotta love the Army, he earns something like 2.5 vacation days a month but rarely has the luxury of using those days, the result is that he ends up loosing a huge chuck of vacation days every couple of years, I think he has 70+ vacation days right now, and 40 or so of those days are "use or loose" meaning that if he doesn't use them in the next few months they will expire). We didn't over plan our staycation. For me it was just really nice to have someone else around to help with some of the regular chores. We went grocery shopping together, we cooked together, we put the kids down for bed and nap time together. Our staycation included: potty training Peter, taking a few long walks, trips to the splash park, trips to several other local parks (including one on base where you can watch the planes take off and land), hitting up the neighborhood pool, watching the kids enjoy the backyard, catching up on the DVR, a quick beach trip, indoor skydiving (the kids and I spectated), a much needed haircut for Peter, and a couple of date nights for Mike and I, story time at the library. A super relaxing week!


Enjoying some New Orleans themed backyard snacks :)

Peter diving into the plastic pool in the yard.

Mike doing some indoor skydiving (thanks again Mom and Dad for the awesome gift certificate). Mike is in the black helmet, the instructor is in the white helmet, they're practicing turns.
At one point during Mike's session Olivia looked right at Mike (floating mid-air about 5 feet away from us) and started giggling and clapping. So adorable.
Forgive the terrible glare!
Peter got a much needed haircut! He looks like such a big boy now, I'll have to try and get a better picture of his new do.
No that's not a dead animal, it's a pile of Peter's hair!


Beach Day!

We were next to a protected sea turtle nest.

Olivia thought it was hilarious to wave hi while holding a shovel.

Of course it was even more exciting to make sand fly all over the place.
Chillin' at the beach.

Splash Park. Can you find Peter's head?

Peter ringing the choo-choo bell (with Mike's help of course)

Splish Splash

Cheese

Someday Soon

I will update the blog. I have plenty to share, big stuff, little stuff, silly stuff and deep stuff. Someday soon I will settle in with a big mug of coffee and endless amounts of time....But lately life has been very hectic. This scene happened in the 17 seconds it took me to pour a cup of coffee this morning. I've also taken to completely screening all phone calls, seriously unless you're one of Olivia's doctors or therapists don't expect anyone to answer if you call. I found my cell phone today in the kids shopping cart, buried under boxes of pretend food. These are all the priorities I can handle right now. Summer is going by to fast!

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Potty Success....Maybe

I don't want to jinx it so I'll start by saying that Peter may be potty trained!

He's 32 months old, a little over 2 and a half. On a whim I got inspired, we checked out stacks of books and dvd's from the library, we made a beautiful chart and we stocked up on a supply of potty prizes from the dollar store.







We stocked up on salty snacks and I let Peter drink to his heart's content.



Peter decided that the orange M&M's were his favorite!



We didn't leave the house for a solid 2 days. We wanted to get the basics down. We were so focused that we completely forgot about Olivia's weekly OT/Speech Therapy appointment.


End of Day #1


End of Day #4


I think we're almost there! Peter gets the concept. He's still wearing a diaper during nap time (but more often than not he is staying dry during nap time). He is still wearing a diaper at night. We're not using pull-ups, he gets to wear big boy underwear. We have left the house. Peter does pretty well as long as we make sure to potty before we leave the house and as soon as we get to our destination.



Peter is quite proud of his potty certificate. We hung it in his room.

Workin' 9 to 5, What a way to make a livin'

We're anticipating many changes as we move to New Orleans in the fall. One of the most welcome will be Mike's schedule. For the first time in our marriage Mike will have a regular schedule. I'm beyond excited about this change! For the last several years Mike's schedule has become increasingly demanding. Currently he is literally at the beck and call of his blasted blackberry. He gets calls all hours of the day and night and often has to leave at a moment's notice. His schedule is such that he can commit to do something but then a work issue comes up and his entire day is instantly rearranged. He leaves for work before the kids are awake and often doesn't get home until well after they are both asleep. I'm cautiously optimistic about what his schedule will be like in New Orleans, but really, it wouldn't be difficult to improve on the current situation.

I'm rambling though. One of the added benefits to Mike's schedule is that we're able to discuss the possibility of me returning to work. Olivia is much healthier now than she was prior to her transplant and Peter is getting older. I'm really excited about the possibility of returning to work. It's not as if I've been lazing around for the last 2 years but I am out of practice! The first thing I did when we decided I'd go back to work was head out to buy some resume paper. Really! Then I quickly discovered that it was completely useless, everything is online now. Whoops! I have applied for a few jobs (my Master's is in Education Administration) so please keep your fingers crossed and send good thoughts my way. However I did notice a huge typo in 2 of the cover letters that I just sent, I spelled Alma Mater incorrectly, huge whoops! This may be difficult! Of course I decide to look for a job when unemployment is higher than it's been in decades!

It's Official....we will be New Orleanians

Weeks ago I shared that we were at a bit of a crossroads. We recently received the 'official' word (in the form of new orders for Mike) that we are moving to New Orleans. Mike has accepted a position as an ROTC instructor at Tulane University. We are beyond excited about moving to New Orleans! Mike grew up just outside of the city, we met and started dating while we were in college there, we will be close to friends and family. We are hopeful that this new job will give Mike more flexibility and allow us to spend more time together as a family. We still have tons of details to work out, including the exact time frame for our move. We do know that we will be moving in early Fall. If you have info to share (especially related to education and housing please do).

"I'm not going to lay down in words the lure of this place. Every great writer in the land, from Faulkner to Twain to Rice to Ford, has tried to do it and fallen short. It is impossible to capture the essence, tolerance, and spirit of south Louisiana in words and to try is to roll down a road of clichés, bouncing over beignets and beads and brass bands and it just is what it is.

It is home."
— Chris Rose (1 Dead in Attic)

Birthday Girl

Highlights

*Olivia lit up when she saw her Birthday Banner*Peter was so excited to sing Happy Birthday to Olivia and he tried to help blow out the candles from across the table*Olivia actually tried to help blow out her candles*Olivia actually used a spoon to eat her cake and ice cream*Olivia loving her birthday gift of the Princess and the Frog movie*

Do You Hear What I Hear?

Great news....Olivia can hear!

Sensorineural deafness (or nerve deafness) is one of the many negative side effects of Sanfilippo syndrome. Olivia has had her hearing tested on an annual basis since she was two (even before she was diagnosed with Sanfilippo syndrome). In the last few years we've had to transition to having sedated hearing tests because Olivia just isn't able to actively participate in the traditional audiology exam. Olivia had her first sedated hearing test in September 2010 when she was having her port removed. Unfortunately the test showed that Olivia had mild to moderate hearing loss in her left ear and severe hearing loss in her right ear. The audiologist recommended hearing aides and took impression molds so that Olivia could be fitted for the hearing aides. We were advised to follow up with a local audiologist so that we wouldn't have to travel far if a hearing aide was damaged or needed a new battery, etc. We took a copy of the report and the molds and were on our way. I spent weeks trying to find an audiologist in the area who would work with the information we were given at Duke. Each audiologist I spoke with said they weren't comfortable working with that info and suggested we contact someone else. Add that to the hurdle of finding someone who worked with our insurance company and it was becoming an incredible frustrating situation. I went back to Olivia's primary pediatrician and explained the situation. He suggested that we try UNC and put in the appropriate paperwork for us to be seen there. I faxed over the report from the audiologist only to be told that the audiologists at UNC were not comfortable working from the Duke data. They suggested we start all over by seeing a UNC ENT and then moving forward (because of course you can't do anything with audiology without first going through an ENT). UNC is an in-network provider with our insurance company while Duke is out-of-network. With our particular insurance we aren't given the option of just paying the difference between the in-network and out-of-network providers, it's a all or nothing situation, they either pay all of it or none of it so we are always advised to try the in-network option first. So off to UNC we went, of course the pediatric ENT at UNC had a waiting list almost 2 months long. I went back Olivia's pediatrician and explained our situation, he then suggested that we go back to Duke and put in the appropriate paperwork requesting that Olivia be seen at Duke. I called Duke audiology hoping to FINALLY schedule the appointment to get Olivia fitted for her hearing aides. By this time I'd spent almost 6 months trying to get this resolved. The Duke audiologist said that Olivia had outgrown the old molds and the report was out of date so they recommended another visit to ENT and another sedated hearing test.

So frustrating! Sanfilippo syndrome is accompanied by so many health risks that complicate anesthesia and sedation. I hate to have Olivia sedated and we try and combine procedures as much as possible.

Olivia was being sedated for her MRI last week at Duke so we tried to coordinate with audiology so that they could do the repeat sedated hearing test at the same time. Unfortunately there was a back up with MRI and scheduling glitches so they were not able to do the test.

We headed back to Duke today for a sedated hearing test. I fully expected that they would take another set of impression molds and I'd even gone so far as to schedule an appointment with audiology in 2 weeks so that Olivia could be fitted for her hearing aides. I canceled that appointment today!

The audiologist walked out to find me in the surgery waiting area and we headed into the consult room. I was expecting the worst...increased nerve damage, not repairable with hearing aides, etc....

The audiologist told me that Olivia's hearing tested NORMAL in both ears, her right ear is significantly improved. Both ears are well within the normal limits! We went on to discuss that sometimes patients with Sanfilippo syndrome experience improvement in their hearing post transplant. As soon as she said it I remembered going over that when we were deciding about whether or not to move forward with transplant. But to be honest with all the life/death stuff we've been dealing with hearing was way down on the list.

On the heals of the news we received last week about Olivia's MRI and improved brain activity today's news is icing on the cake! Such an unanticipated blessing!

Happy Birthday

Today Olivia turned 5. I really can't believe that she's FIVE. If it were not for Olivia's love of the "Happy Birthday song" I think we would have skipped it all together. I'm just not ready. When your child has a terminal disease it just sucks all the fun out of birthdays. But then when your child has been through as much as Olivia has then every day is a celebration. Birthdays are a big deal, we cannot just take them for granted. I'm just an emotional mess tonight. We did have a small celebration today. I think we'll do a birthday party in a couple of weeks (after I've had time to process).

In case you missed it last year, here are the details of Olivia's birthday last year: http://mikelaurieandolivialeiva.blogspot.com/2010/07/4-years-ago-today.html. And here are just a few of my favorite pictures of Olivia during that first year.

Fabulous Fourth

Mike decided on Friday evening that we should head to the mountains for the 4th of July. It was a very last minute trip but we had a fabulous time. We headed up to Asheville, NC for the weekend. It's a beautiful part of the country and it was such an unexpected treat to escape the heat for a few days. We drove up to the mountains and spent a few hours in the Pisgah National Forest. We stayed in an adorable little cabin (thanks to a last minute cancellation) outside of Asheville. We toured the beautiful Biltmore Estate.

We do try and travel and experience new things together often as a family. People often comment that they are so impressed that we're able to travel so often. I'm not quite sure how to interpret these comments. Mike and I have experienced many separations during our relationship so we do value the time that we get to spend together and try not to take it for granted. We also are never sure how much longer we'll be able to do this sort of thing given Olivia's health and mobility so we try to make the most of the time that we have. However I don't want you to think this is easy. Our kids are relatively easy travelers but every trip has it's highs and lows. It's not always a walk in the park. So I'll share just a few of the lows from this trip before I get to the good stuff:

--We had the perfect spot to view the fireworks from a cafe patio but when the fireworks were late starting Mike and I worried that we were missing them and started walking to find a better spot and ended up watching them from the sidewalk under a tree

--Olivia had a diaper leak/poop issue that I wasn't aware of until AFTER I'd picked her up from the stroller to cuddle with her during the fireworks...yuck

--Olivia bit Peter on the nose, really hard, enough to make him bleed. Peter responded by biting her on the arm, hard enough to leave a huge bruise

--We brought a special bottle of wine (bottled by my parents from grapes grown on their ranch) but were not able to enjoy it because I broke it trying to unload the car

--Five minutes into our Biltmore tour I wanted to quit, everyone had their earphones in for their audio tour and were moving 100 times slower than those of us who had not shelled out the extra $10 for the audio tour, it was hot, and crowded, and Peter was heavy and I had a mini-meltdown of my own

--On Monday night Olivia refused to sleep, she was exhausted and fell right asleep around 8:30 but then woke up at 9:30 and refused to go back to sleep until well after 1 am. We were in a one room cabin so that meant that no one was able to get any sleep and Olivia was up again at 7 am

So enough complaining, onto the good stuff. We stopped as the Pisgah National Forest for a quick hike. We wanted to see Sliding Rock. My mom visited Sliding Rock as a kid and told us how neat it was. It's a naturally occurring 60-foot waterslide. I think I surprised Mike with my willingness to try it. He put one foot in water and declared that it was too cold and the kids wouldn't like it. I announced that Peter and I were going to give it a try. It was a little crowded and there was a bit of a line. By the time that Peter and I got near the end of the line Mike had changed his mind so the first time we all went down together. Peter loved it! Olivia enjoyed the slide down but didn't like the plunge at the end very much.

Here's a picture from up above looking down on the sliding rock. It doesn't look steep at all but once you're sliding it does seem to go pretty fast.

Mike and Peter


More of Mike and Peter. They went down at least 4 or 5 times together.


Here's a video of Mike and Peter sliding down. The first part is a little shaky but it gets better at the end. You can also clearly hear me saying "oh my God" as Peter goes under at the end. There were lifeguards and Peter had a life jacket on but it was still a bit too much for me to watch.



We backpacked on our short hike to and from the Sliding rock. The kids enjoyed the ride!


We stayed in an adorable cottage. It was a very last minute trip so we're lucky that there was a cancellation.





We headed into Asheville for ice cream and fireworks. Olivia and Mike shared a milkshake.





We spent the 4th touring the Biltmore Estate. It was amazing. I still can't even fathom that it was someone's home! The Biltmore is not very accessible so we backpacked. Mike is a super stud and could have carried Olivia for miles. I am very glad that I had the lighter child!


I couldn't resist tasting a grape, Peter tried one too! They were pretty sour.

There are 101 bedrooms and 43 bathrooms.





Biltmore House is enormous!

Olivia making a wish!



After our tour Peter was exhausted (I'm not sure why since I carried him the entire time). Peter slept through lunch in my lap. It was one of those moments I'll treasure! When Peter was sleeping I could still see the baby boy, all his sweet infant features. My baby boy is growing up so fast.



We rounded out the weekend with sparklers and bubbles at our cabin.





We hope that you had a fabulous 4th! I know we did!