September Already

Hello there...it goes without saying that I've been very tardy on the blog lately. We have been so crazy busy this summer. We went to Sunriver for 10 days in July, the NODCC conference in California at the end of July, and to Missouri for 12 days to see my family. In between, we've had water ballet, soccer camps, play dates, Whidbey Island week-ends and lots of therapy. I also went to NY and LA for a few days for work - phew:) We've also been working on hiring a new nanny. Our beloved Alison is leaving us - she told us in June, so we've had lots of time to find the perfect person. And I have searched. I interviewed over 15 people over the phone or in person and had around 5 people come to the house to meet the kids. It is such a big decision and one that weighs on me heavily. It's one of those unseen stresses - I didn't realize how hard it was for me until we found our new nanny. It's also stressful for the kids. They love Alison and don't want her to leave. The unknown is always scary. A huge weight was lifted and I am incredibly grateful. More on that later....

So, that is what we've been up to. Taylor had a big vacation because Susan went to Thailand for about 3 weeks. As much as we dread the chaos of scheduling, we really miss the opportunity for Taylor to learn new skills and she really loves her therapy sessions now. She so enjoys moving and Susan is obviously much better at helping her. So, it was a good, but busy, summer. We're ready for our normal, crazy routine and to get back to normal.

And it started today! I can't even believe it, but my big guy, Jacob (now known as "Jake") started kindergarten and Lauren started second grade. My heart was bursting with pride to see them in their uniforms. They both were so excited and a little nervous. Jake, in particular, could not wait. He was dressed and ready to go at about 6:10am this morning. He had a huge smile on his face waiting in line with his classmates and couldn't wait to tackle the world. I wish we could all take his confidance and spirit with us each day. He had a blast. Lauren was a bit anxious - she is struggling with reading some and I think she was anxious about being ready for second grade. She was excited to see her friends and she had a good day. David and I picked up Jake around noon - he gets out at noon for the next two weeks - and took him to lunch and a special outing. He ran out the door and gave me the biggest hug. He is so special and it was such a great day with him. I picked up Lauren at 3pm and took her for ice cream. We had a nice mom/daughter chat and it was great to get 1:1 time with them both today. She looks so big and is such a sweet, wonderful girl. We are proud parents tonight and feel so blessed.

In the back of my mind, I wondered if this is our last child to start their school career at ASB. It is such a special place, but time will tell if it is the right spot for Taylor. Her preschool doesn't start for 2 weeks, so she has a bit of relaxation and quiet in the house before her schedule picks back up. She is seeing Susan again and we're excited to get in a routine and help her make progress. We're also evaluating various feeding and speech therapy options, because we need to make progress in these areas as well. In our absence from the blog, Taylor turned 3 on August 22! We had a party with my family in Missouri and another party with our Seattle family. She enjoyed her new toys - sadly no cake (although David tried to make her an egg-free one) or special treats yet that she enjoys. She loved being the center of attention with the kiddos - it was super cute. We were glad she was able to enjoy her birthday in Missouri - she was super sick with the flu for about 6 days. It was a huge bummer for her, and for my family, who doesn't see her very often. She ended up at the ER for an IV and medication to stop the nausea. Then, she was very lethargic/sleepy for nearly 5 days. It was a doozy of a flu and she lost a few pounds from her peanut frame. She still weighs around 23 pounds, so a few pounds is a lot. Thankfully, she was all better for her birthday.

Our new nanny will start next week - we have a found a huge gift in Erin. She has a master's in special education and did her student teaching at the EEU (Taylor's school). She actually taught for Teacher Beth (Taylor's special friend that came over this summer to work with her) and she gave her a great recommendation. Erin was laid off from a school district and ultimately wants to return to teaching, but jobs are tight out here, so we are fortunate to get the perfect background for Taylor. She is great with all of the kids and as much as we will miss Alison, we have faith that Erin is being brought into our life for a reason right now. The next year is so pivotal for Taylor and we think Erin will be a very valuable member of our team.

So, that is a quick update for now.....I will try to write more frequently. I'm also planning to update the blog with more recent pictures - we've got some great ones that I would love to share.

NODCC Conference

"She's going to be OK", so said Connor, the young man with ACC we met at the NODCC (National Organization for Disorders of the Corpus Callosum) Conference this week-end. It was such an overwhelming, intense, inspiring and hard week-end. It was David's second annual conference (and first as a board member), and the rest of the families' first conference. My mom and David's parents came and it was such a special opportunity to share the week-end with them. There are so many things to share, but here are a few things running through my mind tonight.

• Gratitude - While Taylor is more "involved" (the word for how severe the condition is) than many, she is so much better off than many of the kids too. And we are so blessed to have our family. I met a little one year-old boy who has severe seizures and has code-blue'd twice - he stops breathing and his family is desperate for a solution. In the mom's group, I heard tale after tale of marriages in trouble and women at their wit's end. We saw so many kids with really, really tough medical situations - I am so grateful that Taylor "just" has ACC, versus the myriad of other conditions some of these kids have to deal with. We are also grateful for the ACC community - there were about 300 families represented - most from the US, but from countries like Japan, Norway, and Australia. This will be a safe-haven for Taylor - a world where she will always fit in. These kids live to see each other every year and the families deeply understand what we're going through.
• Pride - You should have SEEN Lauren and Jacob - these big kids, at the old ages of 7 and 5, saw more disabled people and disturbing images than many see in a lifetime. They need to understand Taylor's ACC and realize our family is not alone, and they handled a very deep week-end incredibly well. The conference had a fabulous kid's camp - where they did art projects, played games, and had fun while we attended sessions. The camp was for typically developing syblings and the kids with ACC. This meant Lauren and Jacob saw grown men playing with Tonka trucks, a very "involved" young man who held a baby toy and stared at the wall most of the day, a teen-age girl with major behavoiral problems who held a baby doll all day, and many other really tough situations. At the same time, they made friends with many kids (both siblings and those with ACC) and had a great time at camp. A few times, it got too much for Lauren and she asked to go home. We would take a break and talk and the grandparents were great about taking them for outings to the pool, Great America amusement park, and the movies. We were so, so proud of them.
• Hope - While there were tough situations to see and hear about, we also saw kids with ACC that are largely "normal" and met adults who have gone to college, are married and some have children. There is hope for Taylor and we are even more motivated to give her everything we can to help her reach her full potential. At the same time, we heard the resounding theme that we have to pace ourselves, take care of ourselves and our family, and have faith that "what will be, will be."

I'll write more later....we learned so much and have a lot to share. It was a tiring, exhausting and long week-end, but we are so proud of our family, and I have renewed faith that, as Connor says "she will be OK."

Summer time

Apologies blog readers for the delay.....summer has taken off like crazy and we're having a good time - already I don't know where the time has gone. The kids are full-speed ahead in summer mode - although the weather in Seattle has been gray and cool, so it hasn't felt much like summer. We've had a few sunny days in the last week and we soak it up like crazy. This week-end was beautiful - Saturday I took the big kids for an hour long bike ride on a trail, then we went to the pool and played outside. Taylor ventured into the kiddie pool for the first time and enjoyed it. She splashed and didn't mind the water, so we considered it a success.

The big kids have been busy - they've been swimming a lot - even when it has been cool. Jacob loves swimming in the meets, but not the practices. Lauren doesn't mind the practices, but isn't a fan of the meets. There are a lot of people and it's a bit intimidating for her. Lauren did a drama camp and loved it, and Jacob is doing a sports camp this week - soccer, basketball and baseball. It's so important to me that their days are full of play, friends, and summer fun. They've done art projects, played endless games of "store", tons of creative play with Playmobile toys, and generally been good little buddies to each other. We're continuing to work with Lauren on her reading and Jacob has been practicing his numbers and letters. They've been good sports - in their quest to earn a Nintendo DS video game. I'm not above bribing....so far, it is working.

Taylor has had a great time too - Susan was on vacation for 10 days, so she had a break from therapy. But, Taylor actually misses therapy now because she is working so much on walking and she loves it. She gets so excited - she starts kicking her feet when we get to the door, which means she wants to walk. She also is really enjoying being outside, which is awesome. We take lots of family walks at the end of the day - she loves to "drive" her little red car. She has a cute little sign when she gets excited - she pants like a little puppy and kicks her feet. If you say "Taylor, do you want to go outside?" She reacts like this and we love it. She cracks up at the big kids playing - whether they're shooting hoops, doing cannonballs into the pool, or just running circles. I think she is having a good summer.

She's also having lots of fun with Teacher Beth, her teacher from the EEU that is coming several times a week for a few hours each day. This gives Taylor focused "smart" play time and Beth really engages her. She has created a whole binder to track Taylor's progress and specific skills across play, expressive communication, receptive communication, sensory, motor, and feeding. One example - she took over 20 pictures of Taylor's favorite things and basic needs (bottle, high chair for eating, crib for sleeping, etc) and she works with Taylor to get to choose and communicate what she wants to do. We all think Taylor has said "yeah" in the last few days - and David and I think we heard her say "night" - for "night, night" when we were putting her to bed and David thinks she heard her say "ball". We're so hoping we're on the cusp of a communication breakthrough - it would be so wonderful.

We've been busy as usual - David and I celebrated our 11th wedding anniversary, we've spent a few week-ends on Whidbey Island, I had a busy work trip to LA for a few days, and we're getting ready to go to David's family reunion next week. So, it's busy, but we're trying to embrace each day - the kids are all so cute right now and we're in a good behavior phase, so we're having lots of fun.

I'll post pics soon - Taylor has many teeth now and is getting so big!

Taylor at school

I finally have our computer fixed and thought I would share some adorable pictures of Taylor at school. She's getting big, isn't she?

Taylor the Husky

We've had some great moments over the past few days....I don't know if parent's can possibly love their kids any more...Jacob had his last Tball game of the season and got his first trophy - he was so proud and excited.  Lauren had her first sleepover at a friend's house and did great, and she got a stellar report on her reading progress from her teacher today. And Taylor has big news - she was accepted into the EEU for next year, so she is officially a Husky for the next three years! We are SO excited - this is exactly what we wanted and the best place for Taylor to be. The teachers and staff love her and they are thrilled too. This relieves some (a lot of) stress and we're so thrilled to have another big moment behind us. School is a big decision for any kid, but even more important for those that are pretty fragile.

Tonight was a huge moment - David had the big kids at swim team practice and I was singing absentmindedly to Taylor while I was about to get her PJ's on. I was singing Itsy Bitsy Spider (which is her favorite song) and I stopped midway. She smiled hugely at me and then clearly signed "more". I said "Taylor, do you want more singing?" She grinned, nodded her head and signed "more" again. This is truly one of the first times that I really knew what she wanted - so I sang Itsy Bitsy Spider and a bunch of other songs. It's so great to know that she loves music and my singing (of all things). I love that I made her happy.

Sunny, but rainy, day

Today, despite lots of gray and rain in Seattle, seems much brighter. We're ready for a long Memorial Day week-end on Whidbey Island - all we have to do is bike, play, swing, laugh and relax. It's amazing how much a break from the routine refreshes us all. It's so nice to not have any therapy, appointments, schools, or other heavy stuff to think about - bring on the four day week-end!! David and I are starting to realize how important this time for our family is - in the past, we might have wanted to squeeze in an extra therapy session or not let Taylor go four days without therapy. Now, we recognize that we all need a break every once in awhile. I will pick Lauren up from school in a few hours and then we're off to meet Jacob, Taylor and David, who went to Whidbey last night. Taylor hates the ferry line (which can be long on holiday week-ends), so they tried to miss it last night after Jacob's last Tball game of the season.

I had a good cry yesterday. I hadn't had one in months and usually don't indulge myself, but one had been brewing so I let it rip yesterday. We are in the process of touring preschool programs for Taylor and it is a hard process. We are very hopeful she can stay at the EEU, but once she turns three in August we have to go through Seattle Public Schools assignment programs. She's had to "qualify" for services - a laughable 2 hour meeting, which requires piles of follow-up paperwork - and yesterday we toured our closest public school to see their special needs program. It was another really hard moment for me - we toured the stereotypical "short bus" and the classroom of 13 special needs kids. It's not unlike the EEU, but fewer teacher/student ratio and less immersion of typical developing kids. For these reasons, we really want her to stay at the EEU. In any case, for politics, it is important to show that we've done our homework and researched all options. For me, it was another moment of "I can't believe it" - sometimes it still hits me out of the blue that we're in this world. I want Taylor to go to any school she wants and it's just not an option. I don't want to worry about her getting knocked over and her arms not protecting her head if she falls, or kids with behavioral problems (of which there are more in these programs) hitting her. The list is long and as David and I sat with the adminstrator yesterday, I fought back tears. I knew crying in front of her was probably not the best "political" move since everyone is always proud of their school.

So, after we left I gave in to a good, solid cry and after some hugs from David, all is well again. It's amazing how a good cry can ease your soul and the heaviness of worry gets washed away. I also said a good loud prayer and I think God heard me because I feel much better today. We're ready for a fun and relaxing week-end.

I'm sorry I'm behind on posting pictures - our other computer that holds our digital photos is on the fritz, but I'll get caught up. Despite the sadness of the last few posts, we've had a fun and busy spring - I was so proud of Jacob at his last Tball game - he got his first trophy and just beamed with pride. The big kids have also started swim team and they are enjoying the pool time - even in the rain. Thankfully it is heated. We haven't had a lot of nights at home amidst our activities, but we're grateful for the fun and friendship we all have at these events.

a belated anniversary

Another milestone I didn't commemorate on the blog, but it was very top-of-mind for me - was the second anniversary of Taylor's diagnosis. May 5th, Cinco de Mayo, is the big day and I did much better this year. No tears. I still can hardly believe that two years has gone by - she has worked so hard and overcome so much. And at the same time, it has been a long two years. This road is not easy, but we are so grateful for Taylor and all of her gifts and the amazing little people that Lauren and Jacob are becoming.

Isaiah 41:10

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

The power of speech

So much has been happening, but I've been having a hard time writing - or wanting to write. Amidst lots of great and fun moments, I've been working on not becoming overwhelmed with worry. I've had a hard time putting my finger on the exact problem, but today it became clear to me. I'm realizing more and more everyday that Taylor, and our entire family, has such a long haul ahead of us. I've been so fixated on getting Taylor to walk for the past two years that I've tried to compartmentalize the "other stuff" that we need to work on. As she approaches her third birthday later this summer, we realize desperately that she needs to learn to eat and communicate. The mouth, as it turns out, is a complex set of muscles and the brain power required to swallow, to chew, to eat, to push air out to speak is significant. And, it is really, really hard for Taylor.

Taylor so badly wants to be able to communicate. She still can't say any words consistently besides "dada" and while we understand many gestures and movements that she makes - she can't speak. A day with Taylor alone is a quiet day. You realize what a gift it is to hear your children babble, to hear what is on their minds, to hear the funny silly things they say, and most importantly, to hear what they need. It is such a gift that she can smile and giggle - emotion is a wonderful thing. But language is powerful - and nearly three years is a long time to wait for a voice.

She is now attending speech therapy once a week - and it is very obvious that she is going to need much more help. She really enjoyed the first several weeks, but the past few sessions - she is very sad. And she isn't stressed or pushed in any way - she is simply mad that she can't speak. All toddlers deal with this to a degree - but I am so sad that Taylor can't make words. Everyone that works with her for any period of time will say "she's in there" or "there's a lot going on in her head" - and we are so hopeful when we hear it. At the same time, I can't imagine how frustrating it is for Taylor to not be able to share what she is thinking. I will look at her when she is zoned out at Jacob's Tball game and think "is she incredibly bored?" "could she possibly be having fun?" Some day I really hope she can tell me. Because the reality is there are kids with her condition that never learn to speak. I am trying to stick to my sometimes helpful mantras and not let myself consider this possibility, but it is top of mind right now.

The good news is that her walking is coming along nicely. She is working really hard and we've cut her therapy down to 90 minutes, instead of 2 hours, because she is doing so much physical work. She loves to walk - she still needs a bunch of assistance, but she has learned to pick her feet up and move them. I try to remind myself of all of these small wins - not long ago she couldn't pick up her own feet. She would get so mad looking at her feet and willing them to lift - now she can do it and she is on her way. I believe she will walk and I can't wait. She is so ready to move, walk and run. We are still months and months away, but I can envision the finish line.  

I'm hopeful every other hurdle will have a similar successful outcome.

Happy May!

Well, well, how time has flown....the past several weeks have been busy, busy. David and I went to Boston for 6 days while my mom watched the kiddos and then we enjoyed a few more days with my mom. Then David went on a well-deserved golf week-end and a few days later, I went on a four day work trip to New York. Phew...no wonder we've been a bit out of sync. We have had a lot of fun - David and I really enjoyed our long week-end away and he did a wonderful job at the Boston Marathon. I was so proud of his hard work and the marathon fit the bill of the "Super Bowl of Running." It was so festive with so much energy for the runners. Not only did David run incredibly tough, he also raised nearly $10,000 for the NODCC - the organization for Taylor's ACC. This is a small organization, so the money will go far. We were so touched that so many people care about Taylor and contributed to help sweet kids like her.

Of course, the crazy routine makes it a little tough on the kids - this was by far the craziest few weeks we've ever had regarding travel. Jacob, in particular, craves routine and missed us while we were gone. I taught him my phone number and he called often - but it was cute to hear from him and empowering. They didn't have much time to miss us though - my mom was a trooper keeping up with the nutty schedule. We've recently added Tball and soccer games for Jacob and soccer games and practice for Lauren to the mix, on top of our typical craziness.

We're in a good groove right now. Here are a few notable Taylor updates:
1. Her endocrinology test results came back and they were normal. This is good news - no shots or supplements required, but definitely confirms that we need to make progress on her diet.
2. Taylor is the recipient of an eye patch - her left eye is weak and wanders a bit - if you remember, it was her eye doctor that first clued into her condition. So, now she needs to wear an eye patch on her right eye to help strengthen the left eye. We're starting slow - about an our a day - so we'll see if it helps. It would definitely be helpful for her to have good vision. We also hope she doesn't mind the patch too bad. Lauren was so sweet about it - both big kids were very interested in the patch - thankfully Lauren has had a few classmates with one, so it doesn't seem too odd to her. In fact, she and Jacob both wanted one too. Lauren was concerned that we didn't have a cute enough patch, so we have work to do. I said Taylor would be a cute little pirate and Lauren got very excited and said Taylor could join she and Jacob while they play Playmobile pirates. You gotta love the silver lining.
3. One of the areas I'm most excited about is Taylor's speech. She still isn't saying words, but she is babbling more and really paying attention to our mouths when we speak. I went to her speech therapist on Wednesday and was so encouraged. She is such a sweet lady and Taylor is mesmerized by her. She watches her so closely. Judy is working with her to make sounds - and now Taylor is comfortable enough with her to let Judy move her mouth and cheeks. Essentially her mouth is weak and needs to be strengthened. This will ultimately help with her eating too.

We're so happy for her progress and for our family. I'm working on some PR efforts for the EEU and have been interviewing various families. It is both sad and heartwarming to hear different stories. It is helpful to see the common bond we share and refreshing to hear the honesty of the other mom's. It is hard to find time for extra efforts, but I feel so strongly that it is important to share what a wonderful place the EEU is and to help educate people about kids with special needs - how wonderful they are and how deserving they are of resources.

Will post more soon and pictures.....sorry for being behind....we're in a nice, normal stretch for a while, so hopefully I'll do a better job on the blog.

The Talk

We had a big moment with the big kids over Easter week-end. Believe it or not, we'd never really talked to them about Taylor's condition. Of course, they've asked questions from time to time - although not nearly as frequently as you might think. Taylor's therapy schedule and "walking coach" Susan have been such a part of our life for nearly two years that the big kids usually don't seem too phased by it. We'd answered any questions so far - "why does Taylor have a walking coach?" very simply - just like Lauren has a reading coach and Jacob has a soccer coach, Taylor has a walking coach to help her walk. They've noticed that younger kids are more capable and bigger, but we've talked about how everyone learns and grows at their own pace. The innocence of children is remarkable.

We neglected to tell them because at first, we were so overwhelmed and didn't know how to answer questions. Then, our new routine became somewhat normal and they didn't ask questions. We've wanted to protect their innocence and let them be kids without the "heaviness" of the situation. But, enough time has passed and Taylor has enough noticeable delays that we've known for months that we needed to have "the talk". We kept making excuses - let's get past the holidays, then past Hawaii, and then a million other excuses, but we decided Easter week-end that we really couldn't wait any longer for a number of reasons.

So, we found an opening Saturday morning - Jacob asked an innocent question about Taylor's hands ("why do they go like this?" - making a pincer grasp), and I dove in. I explained to them that Taylor's brain is different and that this makes things harder for her. We had a great book from the NODCC called "ACC and Me" - a kids book that describes the condition really simply. I read them the book and answered their questions. We didn't want to make it a big "moment", so the spontaniety of it worked for us. Interestingly, Lauren's big question was "why didn't you tell me earlier?" We explained that we didn't know when Taylor was born and we were still trying to understand ACC. They were very curious if they knew anyone else with ACC and Jacob even said he wanted to have "the ACC". We answered a few more questions, then Jacob said "let's play legos" and we were done.

We had thought so much about this conversation and so badly wanted to do it well - explaining it factually, without freaking them out, making it unnecessarily heavy, or a huge life moment they would always remember. We want them to maintain as much innocence as possible, and for life to be as carefree as possible.

They told their cousins at an Easter gathering that night, so I gave the same speech to Rory, Griffin and Graham. Rory, in particular, is old enough to understand what is going on at the ripe old age of 9. They are all so sweet with Taylor. The double conversation was emotionally draining for me - you really don't want to have to tell your dear, sweet kids that their sister has a different brain. These are the moments you can't predict or plan for in life. But I hope that we approached it with sensitivity, grace and a spirit of positivity - these are the gifts I want to give them forever. And to understand that they all are special - in their own unique and wonderful way.

Belated Easter Update

Taylor said "mama" tonight. She was in her highchair and I was cleaning up her dinner and I walked back to her chair - she looked right at me and said "mama". This was music to my ears. You may remember that mama was her first word and shortly after her seizure, she lost almost all of her words. She has a very consistent "dada", but this was the first time I heard a clear "mama" in almost a year. It's hard to describe how much my heart melted. I know she loves me by the way she looks at me, smiles, cuddles, and lights up for me. But it is so nice to hear my sweet little gal say "mama". I will treasure that forever. I hope to hear it much more.

It's a fitting ending for our last several days. Lauren was on spring break last week so we went to Whidbey Island on Thursday and just relaxed. It is nice because we have to slow down there - no therapy, no running around, no household chores - just playing, being outside and relaxing together. The kids had a great time and David and I really needed the break. We've had a tough few weeks and needed a moment to recharge.

We went through a lull where it's hard to say exactly why the past few weeks were tough. We had a round of doctor appoitments - as we do every few months - this time hitting her pediatrician, neurologist, and endocrinologist. This involves appointments at Children's and while not as stressful as it used to be, it still hits you on the head that you are visiting specialists no parent ever wants to see. Her pediatrician appointment was uneventful and quick - he was quite late and rushed - and annoying - but quickly confirmed what I was worried about - she has fallen off the growth chart and he was concerned about her growth. She is still proportional - height/weight - just very small. He agreed we should go back to endocrinology to test for growth hormone or other hormonal deficiencies that might impact her growth. David was a trooper and took her to that appointment - which I hate because it involves giving lots of blood and in the past, this has been really hard for Taylor. As expected, we learned nothing except Taylor gave lots of blood - we're still awaiting the test results. We swore we'd always make sure to do the blood work before we saw the specilist so we could actually have a productive conversation, but they got us in on a cancelled appointment - otherwise we would have to wait until July! The specialist doctor shortage is the real deal. So, we're waiting to learn more, but they actually think her growth issues may be associated with her diet - or lack thereof. Particularly worrisome is a protein shortage. She truly hates turkey/chicken baby food, but we're going to have to get creative. While also tackling feeding therapy more aggressively. Ahhhh......on the plus side, the neurology appointment was positive - amazing from our old curmudgeon of a doctor. He was really pleased with Taylor's progress and said he thought she would be able to walk!!! - given her progress. This was so wonderful - no doctor ever tells us anything hopeful so to hear definitive guidance was such a gift. We needed a bright light so badly, and combined with my "mama", life is sweet.

We needed this reminder because Easter was kind of hard for us. Again, it's hard to say why. It followed this series of doctor appointments, and Jacob and Lauren had staggered spring breaks which created two weeks of schedule juggling. Also, Susan was coming to our house early for therapy sessions, so it was lots of therapy for all of us. The combination of this had me heading into Easter in a bit of a funk - but mostly, it really hit home that I want Taylor to be able to hunt Easter eggs like the other kids. She is 2.5 now and it is so hard to know what she is missing out on and what we so desperately want for her. Of course, with the big kids, we want to embrace all of the fun and festivities - but I have to mentally prepare myself to not be sad for Taylor - or at least try to. My old mantra "it's not helpful" to be sad or worried came in somewhat handy, but it was a bit of a long week. At church, we prayed for peace and I prayed extra hard - I felt like I needed an extra dose this year.

So, after a few tough weeks, this week-end was even more blissful and made Taylor's special "mama" gift even more special. Our life is truly good and we are blessed.

Taylor standing

Here are some very recent pictures of Taylor standing! She is working so hard on this right now. You can see her in the top picture standing straight - this is such a huge accomplishment for our sweet gal. She does this for about 15 minutes at a time now - trying to build balance and stamina. In the other pictures, she is again working on balance and stamina - she loves the purse game - she will hold and drop the pictures while practicing her standing. And, she "dances" with her favorite stuffed dog (who sings "Who let the dogs out?") to practice twisting/balance shifting while standing. You can see how tired she is with the dog - this is incredibly hard work for her - but it's paying off!

David's run for the NODCC

Tonight I am so proud - David is running the Boston Marathon on April 19th and running as a fundraiser for the NODCC. His letter is so touching - see a father's love below. This is a coming out-party for our family in a way -we've decided that it is in Taylor's best interest and our family, to help people learn about her condition. As time goes by, her delays become more apparent and education is valuable. We also see this as building Taylor's team - the more people cheering for her from the sidelines the better.

March 18, 2010

Dear Family and Friends,

On April 19th, I will be running in the 114th Boston Marathon. After qualifying for this prestigious event in June I have decided to make each mile make a difference for a cause that is so important to the Gurry family. I am running in order to raise money for the National Organization for Disorders of the Corpus Callosum (NODCC).

I am asking friends and family to consider sponsoring me for this event. I have two ambitious goals – first to complete the most famed marathon in the world without sustaining any bodily harm and second to meet my personal goal of raising money for the NODCC. I would greatly appreciate your kind consideration by making a donation toward this goal. All donations are, of course, tax deductible.

As many of you know, this is a personal cause for me. Many of you may be more aware than others as to the degree our lives changed eighteen months ago when our youngest daughter, Taylor, was diagnosed with a Disorder of the Corpus Callosum (DCC), a prevalent but still relatively unknown brain disorder. Simply put, Taylor has no Corpus Callosum (complete agenesis of the Corpus Callosum), the part of our brain that connects the right side to the left side of the brain. People without a Corpus Callosum experience moderate to severe learning delays, social, behavioral and other medical challenges. Taylor has significant developmental delays and has some medical challenges but is making great progress. At 2 ½ Taylor can sit un-assisted, maneuver into sitting from lying down, play with toys, starting to learn some sign language, etc. While she is not crawling, walking, or talking we are hopeful. Taylor is the hardest working 2 ½ year old in town. All of the great advances that Taylor has made are a result of 4 days of therapy a week along with three weekly sessions at the Experimental Education Unit at the University of Washington (our youngest little Husky). Taylor has several doctors at Seattle Children’s Hospital and Swedish Hospital and we are so lucky to live so close to some of the most amazing medical staff in the country. We have been so fortunate to run into the NODCC, a national non-profit that supports and advocates for children with this condition. The organization provides education, current medical research, support, and a community for those that are affected by this rare disorder. The NODCC is a great group of people that are doing amazing things for those affected by a Disorder of the Corpus Callosum.

Although it will be a challenge for me to complete this race, the challenge is nominal compared to what children with DCC must overcome to achieve simple developmental milestones that most take for granted. When I am in the final miles of this race I will be thinking about all of the hard work that children with DCC do to learn simple tasks such as sitting, eating, crawling, walking, etc.

You may write a check directly to the NODCC or make a donation at http://www.nodcc.org and include that it is on behalf of “Boston for NODCC”. The NODCC’s address is PMB 363, 18032 C Lemon Drive, Yorba Linda, CA 92886. Thank you in advance for your support. If I have missed anyone feel free to forward along.

Sincerely,

David, Lisa, Lauren, Jake and Taylor Gurry

Beautiful day

Tonight I am so happy. We had a wonderful day - Jacob had his first T-ball practice this morning and he was so excited. He had his baseball outfit set out for the past five days (Baseball pants, batting gloves, hat, helmet, mit, ball). He couldn't wait. He loves to do anything that feels "big". The girls and I hung out at home while David took him to practice - guy time. Lauren is so sweet with Taylor. She loves to play "school" with Taylor - she lines up bunches of stuffed animals and sets up different toy "centers" - and then asks me to move Taylor around the room with her "class". Lauren reads them stories, lectures to them and Taylor just follows along. They can do this for an hour or more. It is beyond cute. This was our morning activity.

The weather was gorgeous today - sunny and 70. All three kids went for bike rides and I knew it was a successful day when I looked out our front door - two pairs of muddy soccer cleats (Lauren and Jacob's from earlier this week), a baseball mit, soccer ball, and two bikes - all signs that kids are having fun. Later this afternoon I took the big kids and a friend to Chuck E Cheese - which is disgusting and overwhelming - but they love it. Tonight Lauren has a friend spending the night and they are giggling and laughing and I love when our house is filled with joy. We had dear friends over tonight and Taylor loved playing with their little girl, who is only 10 months, but about the same size and skill level. It's funny - I won't even think of a friend this young as a playdate option, but she is actually perfect. Her dad was throwing her up in the air and Taylor was cracking up watching. I love it when she finds things funny - her little belly laugh is so cute.

My last post I spoke about the hectic craziness of our schedule. A few days later I read an interview about one of my old college teammates, Deena Drossin (now Kastor), who is a 2x Olympian and still running. She said (paraphrasing) "God made time, and He made enough of it" - I thought this was so great - God did choose to make each day 24 hours and it's up to me how I embrace each hour. So all is well in the Gurry house - amazing how wonderfully happy we are on a sunny day.

Gurry's in Hawaii - belated photos

It has been far too long since I've posted some photos - I will get us caught up this week-end! First, a few fun vacation shots from Hawaii...

Taylor's normal

The weeks keep flying by and we are well into spring now. I can't believe Easter is right around the corner. Life continues to be very busy, mostly fun, and sometimes hard. Although, it's funny - I remember writing awhile back how we were so looking forward to our "new normal" - where our life with Taylor and the unexpectedness of her condition would be normal for our family. Sometimes I think we've made it, and other days, I know we haven't. We will have weeks, where we are so into our routine - which has to work like a well-oiled machine - that I don't stop and think about the enormity of it all. Other times, I am gripped by this desperate longing for it to all be OK. The definition of "OK" has evolved - where I want Taylor to be happy and healthy, hopefully walking and talking, and able to find joy everyday - regardless of whether she's a college professor, working at the Gap, or helping at Children's Hospital. I want Lauren and Jacob to reach their potential - with the stress free lives that all children should lead. And know that they are loved so very much by parents who will do anything for them.

In any case, we continue to take comfort that we're doing the best we can. Taylor's schedule continues to get busier and busier, and we're doing our best to adjust without impacting the other kids - mostly Jacob, because he doesn't have school on Tuesdays or Thursdays. We're so thankful for Aunt Shannon, who is so gracious with playdates with cousin Graham and lots of other friends who create fun times for Jacob so he doesn't have to go to therapy or appointments. Alison continues to be a rock - doing everything she can for Taylor and our family. We really, truly could not do it without her - as with Julie before her, this family is so much more than a typical nanny job - and we are infinitely grateful for her patience, dedication and true love for Taylor.

I haven't updated the blog on Taylor's typical week in awhile - so here is a sense of how busy our little gal is.

Monday - school from 9-10:30am; therapy (mainly arm stretching so her arm doesn't get tight) from 10:45-11:45am - Alison is a trooper and does the Monday appts.
Tuesday - therapy from 9-11am; special 1:1 school session at the EEU from 12:30-1:30pm - Alison again does the therapy appt and David does the school session. The school session will soon move to Friday, which will be great because then I can take Taylor.
Wednesday - school from 9-10:30am; speech therapy from 11am-12pm - David usually took her to school, although now I am trying to take her to school and to speech
Thursday - therapy from 9-11am - Alison again
Friday - therapy from 9-11am - this is my session

This is the standing schedule - not including a myriad of dr. appts and the other stuff we work with her on at home. The scheduling can be exhausting, particularly because I don't want to over-burden the big kids or Alison, and David and I need to stay employed. We are blessed with flexible schedules and lots of wonderful friends that pitch in. Thankfully, it's much easier now because Taylor is mostly happy at school and therapy.

So, when you add in the big kid's schools, soccer, Tball, reading tutoring, playdates, birthday parties, etc. - at times I am overwhelmed. But I can honestly say that most weeks - we are a well-oiled machine and are approaching a normalcy that I hadn't predicted a year ago. Of course we are hopeful Taylor's schedule will slow down soon - for her mostly, but also for the rest of us. But in the meantime, we take comfort that we're pushing her as much as we can, while still leaving time for her to be a kid - because isn't that the most important "normal" of all?

Blissful week-end

We had a blissful week-end. Saturday was one of our best family days ever. Lauren summed it up right before bed "it was a really good day, wasn't it, mom?" We went to Whidbey Island and had a totally focused family day - no chores, no distractions, nothing but fun. The big kids had a ball - we are all about bike riding right now. They both have learned how to ride without training wheels - Jacob actually learned first (and very quickly) and Lauren did not want to get passed up, so she has learned too. She is more cautious and her bike is larger, so she hasn't taken to it as quickly as Jacob - who literally is jumping curbs and doing small wheelie's. But, yesterday she learned how to turn corners and get started (without a push) all by herself. It is so great to see their pride when they learn something new. There is lots of open space at Whidbey, so they were able to ride, ride, ride.

Friday afternoon, Jacob wanted to go for bike ride. I was desperate to go for a run, so I took him to a nearby bike trail and he biked, while I ran. While he is a very solid biker, I realized he does not bike in a striaght line. It was such a sunny day that there were lots of bikers on the trail. He nearly got run over two times because he swerved at the last minute and bikers were flying by. It was very stressful for me, so we also worked on riding in a straight line at Whidbey.

We also went for beach walks, David hung up a swing on a big tree, Jacob did his gardening to his heart's content (basically pulling weeds and digging), Lauren and I cuddled up and read books (somewhat begrudgingly, but she's much more willing than she used to be), and Taylor laughed at all of us. We had a great BBQ dinner and then had family dance party. The kids love to dance - all of them - and it was just a blissful day.

Taylor has a little bike that Susan had retrofitted for her with pedals that strap to her feet. Today we went for a little ride and if she has the right shoes on (they need to be big because her feet are so litte), the straps will hold her shoes on the pedals and she "pedals" the bike. This is a great trick because it mimics the pattern of walking. She is learning how to lift her feet up and down to walk, so we are going to do a lot of biking until her brain creates the right pattern. One of the many tricks we're trying...

So, we are all happy campers tonight - a great week-end is wonderful for all of us.

The power of words

Tonight I had my first warrior moment for the special needs community. I am on an email list for the parent's at Taylor's school and one of the parent's sent an email about a babysitter that called her son some horrible names - cursing and everything - after the parent gave her some feedback about her babysitting skills. I have never seen something so mean and hurtful - and from a UW student. She is a member of a sorority and clearly doesn't appreciate how blessed she is, or understand how hurtful words can be. Even more scary, she's in the education department.

At first, I quickly wrote an email to the girl, so she could see how far-reaching her comments could go and how hurtful words can be. She clearly needed a teaching moment. Then, after David's urging to calm down, I made the wise move to send the mother the email addresses of her sorority's president and their head of public relations - they need to know how this girl is representing their chapter. The mom was thrilled and was going to send them the email from the girl. This may all sound childish, but I am amazed sometimes how little awareness there is for political correctness for this community. I want to be a thoughtful warrior for these kids - many of whom can't communicate to defend themselves - and help raise awareness of the need for not even sensitivity, but basic human decency. This babysitter is my first student - I think she will have a hard lesson, but I hope it will serve her well in the future.

Off soapbox for tonight....

Little Noah's inspiration

Today was an incredibly sad, but thoughtful day. I went to the funeral of a friend's son and it was such a sad event. Noah was a 4 year-old cutie pie with a huge smile and the descriptions of him reminded me so much of Jacob. They shared a lot of pictures of him and there were so many similarities of our families.

It was such a reminder to embrace every day and cherish every moment. Little Noah was taken away in an instant - a freak accident - and he is gone. His poor family now needs to figure out how to move on.

I am so, so grateful for my family - at times I get overwhelmed and tired and today was such a reminder that no matter how hectic our lives get - we are so blessed to have each other. I gave all of the kiddos extra tight hugs tonight - at the funeral, Noah's father told me to hug my kids extra tight, so I did. The only good that can come out of this situation is for people to remember how every day is a gift - tomorrow is never guaranteed and loving and living well is how we should approach each day. I hope to take this inspiration forward - of course we know it - but it really hit home today.

I'll post a normal update soon - just wanted to tell everyone that follows Taylor's blog that all is well and today more than ever, I am so thankful.

Aloha

Aloha....we returned from Hawaii on Tuesday night and as much as we love vacation, we are always happy to return home. The kids are so cute - they are always so happy to return home - it makes us feel great that they love the home we've created for them.

We had the absolutely best vacation. We had 12 days in the sun - beautiful weather and lazy days where we did anything we wanted. All of the kids had a blast - this was the first sunny vacation that Taylor really enjoyed and we had so much fun watching her. She was literally belly laughing and giggling the whole time. So many people said "she is so cute", "so happy", and "she's never sad...what a happy girl". Before she hasn't enjoyed the sun or being out of our element and it was such a gift to see her blissfully happy. She enjoyed being on the beach and watching the waves and kids play. And, she really enjoyed the pool - splashing around and spinning in the water. We also treasure the time that we can give her as a "normal" kid - no therapy, no exercises, no strenuous activity - just time for her to be a regular kid and for us to be a regular family. We could feel the stress melt away - it was so great for all of us.

Lauren and Jacob also had a ball. They swam everyday - Lauren is a fish and could live in the water. And Jacob is now a full-fledged swimmer. He can freestyle across the entire pool, dive down into the bottom of the deep end and get dive sticks, and he had fun playing with Lauren. They both made random friends with the various kids at the pool and had a great time. Lauren, in particular, is our social butterfly and will make friends with any kid quickly. They also had fun playing on the beach, hunting for coral, and beginning body surfing. They just had so much fun - we had picnics at the pool, walks on the beach, and played from sun-up to bedtime. We also always appreciate their gifts - Lauren has an eye for beauty and detail - she is the first to notice a pretty flower, the sunrise, a rainbow, or very minor, yet beautiful details. She drew many pictures and wrote a journal for her teacher, which was super cute. Jacob has a zest for life and it is such a joy to hear his belly laugh when he gets wet in the ocean, gets surprised, or finds something funny. He has a quest for learning and loves to accomplish new things - he was so proud of his swimming and loved to practice snorkeling in the pool before we went on our snorkeling cruise in the ocean.

We were very spoiled to have Alison join us for several days - she would help us for several hours a day - a few days we took the big kids on special outings (a whale watching trip and snorkeling cruise), which wouldn't have worked for Taylor. And, it was nice to let the big kids experience new things. They were so curious about the whales and they both really enjoyed snorkeling. We also had a few date nights, which was really nice for David and I.

We are thrilled for our vacation and are slowly catching up to life in Seattle. It is good to be home and we are so thankful for a wonderful vacation. I promise to post pictures soon.

Happy February!

Wow, I got off to a really slow start in 2010 - didn't I? Apologies loyal blog readers, I will try to do better. I have no excuse really - slow start after the holiday, followed by a week-end work trip, which threw me off schedule (all the life stuff had to happen during the week). And, the month just flew by...enough excuses.

We have been a bit bogged down lately - lots of stuff to think about for Taylor, we're really working hard with Lauren on her reading, and Jacob on a few behavior quirks. For the first time, we're seeing him act out because he wants more attention - and he is jealous of the attention (or care) Taylor receives. We've been working on trying to give each of them their own time - we so badly want each of them to feel so loved and special. I think this is a challenge any parent faces, particularly with three children, but we put extra pressure on ourselves because of our situation. We rest assured each night that we are trying our hardest and no three children could be more loved.

For Taylor, we're ready to dive into a new regime. We leave for our annual Hawaiian vacation on Friday (hurray!!) and when we return, we're ready to tackle some new areas for little T. We desperately need to make great progress with her on her eating - she still is stuck on oatmeal and baby food - and alternates between being fussy while eating to non-interested. We're so grateful for an easy meal. But, she would so enjoy eating other food and it would be good for her digestive system. So, we need to start a system where we're really encouraging this development. She doesn't like new, or unfamiliar things; and her mouth is very sensory sensitive so it won't be fun to push her. But, like all things, we know it is the best thing for her. We're also starting to work with her a lot on communication. She wants to communicate and is getting very interested in being able to communicate with people. She waves vigorously now to say "good night" before going up to bed and we've seen a simiar sign to "all done" when she is eating. We're working on giving her lots of choices to nod, or shake her head to - she needs to be empowered to know that we will listen to her and she can share what she wants. We think she can begin to learn different signs, so we're starting to work on certain specific sign language we think she can learn. So, another area we're starting to focus on a lot.

Physically, we're really pleased with her progress. She has really accomplished moving from laying to sitting all on her own! She can do it fairly quickly now and has done it a few times with no encouragement. Alison went to get a glass of water in this kitchen and when she returned to our family room (the rooms are connected), Taylor had gone from laying down to sitting up! I haven't had that happen yet, but we're trying to give her more opportunities to have to work into sitting and not help her so much. Again, it's all for the best for her - she can do it and will feel so empowered when she knows she can do it anytime.

Today is a great day because it is my mom's birthday! I am so thankful for her and love her bunches. Eeach year that goes by I am so thankful for my family and our health. David and I are so fortunate to have healthy, wonderful parents.

Happy New Year!

Happy New Year! We're already well into 2010 and I can't believe I haven't written yet. We have been adjusting (slowly) to the post-holiday world. We had a wonderful Christmas in Seattle and a fantastic trip to Missouri. We returned on January 5th and we've all been getting back into the swing of things. Trying to catch up is daunting, so I will just say we had a wonderful time and nice break from our typical craziness. It was great to celebrate in Seattle and so amazing to see my family in Missouri. The kids had a great time and Taylor was healthy!! She had a bad cold on Christmas Eve, but felt good the entire time we were in Missouri. Last year she was so sick, it was great to see her enjoy the trip this year and for my family to see her little personality shine. She did have some trouble with constipation, as she tends to, and it gets even worse when we travel. Once we got that issue taken care of (which is really painful for her and interrupts her sleep), we had a very relaxing 10 day trip.

Since we've been home, little things have come to mind that I wanted to document. I'll start with Taylor. Almost overnight, we see her trying to communicate and more spark coming through. She is laughing, enjoying playing with her toys, and crying louder/whining when she is unhappy. She is also saying "da da" a lot and making raspberry noises. We can't wait for her to be able to communicate more, so we're enjoying this new development. She has started waving, consistently, to say "night night" and you can see the pride in her eyes as she waves vigorously. The big kids just praise her and are so sweet.

Her big new trick is sitting up - while she has been able to sit for a long time - she now can go from laying down to sitting up all by herself. This is a huge transition skill and has taken so much work. She's been working on this for about a year and I'm amazed when I think back to Susan first showing us the exercise, where you literally helped her little arms "walk" up about 7 times to work herself into sitting. She absolutely hated it and the exercise was awkward. Her little hands had to open up and take her weight and you can still see her little arms quiver with the effort. I videotaped her on Friday and will try to post it to the blog. It takes her about 2 minutes to go from laying down to sitting up - still a tremendous effort but she is capable of doing it on her own. She does it best for Susan - when all she does is tickle Taylor's back. We need her to realize she can do it anytime she wants. I can't wait to walk into her room and see her sitting up in her bed all by herself.

Today, Taylor and I went shoe shopping, as all girls should. She'd never been fitted for a pair of shoes before. We've either gotten her little shoes at Target (Nordstrom didn't even carry shoes small enough for her), or used Lauren's hand-me-downs for her orthotics, which are bulky. Now, we're ready to work on standing a lot more, so Taylor needs to wear her orthotics regularly - we're starting with 45 minutes a day (outside of therapy, where she wears them a lot). She wore them for 45 minutes on Friday in therapy and did great. Her feet are very delicate and non-calloused, so we have to work into them so she doesn't get blisters from her orthotics (which cover the bottom and sides of her feet and go up around her ankle). So today, we went to get "real" shoes that fit her orthotics. I went to three stores before finding good options. The salesman was very kind and took some time trying on various kinds of shoes. Surprisingly, this was one of my first public outings with a noticeable "special need". I could see others in the store, particularly kids, looking at Taylor and wondering why she needed the special orthotics (or some would call them braces). This would have been really hard for me awhile back, but now, I focused on being so proud of Taylor for being able to practice her standing and getting her first pair of big girl shoes. She still wears a size 3 without orthotics (in comparison, Lauren wore a size 6 at this age) - because Taylor is little and her feet haven't had the same stimulus, or weight-bearing, as most kids her age, her feet haven't grown to a normal size. The standing, and hopefully walking, should help her, but in the meantime, we have pretty new shoes! I will take a picture and post it.

Meanwhile, Taylor and I have had lazy Saturdays because the big kids are taking skiing lessons at a mountain about 45 minutes from Seattle. They are gone with David from 8am-3pm on Saturdays for 8 weeks - I miss them, but the kids love it. They are having a great time and I'm glad they are learning a fun sport. Lauren is getting quite good - she is quite athletic. Jacob is good too, but has been a bit fearful of the chair lift - perhaps next week.

Jacob has been busy building all of the Lego's he got for Christmas - he loves them! He is really good at them - he can follow the intricate instructions in the booklets to build airplanes, pirate ships, and all kinds of cool stuff. He likes me to sit with him, but he is really good at building amazing stuff. He flew through a kit today that was designed for 7-12 year-olds. He is our little engineer.

Lauren is having a great time playing with her new toys too, and was so excited to get back to school and see her friends. She was "superstar" of her class this week, so she got to take something special to share everyday and our family joined her for lunch on Thursday. It was the cutest - she decided her something special to share would be Jacob, the magician. Jacob got magic tricks for Christmas and loves performing. He did four magic tricks in front of Lauren's entire class with Lauren as his assistant. We couldn't believe he did it. He was very composed and loved it. Lauren was also excited to show off Taylor - it was heartwarming to see. She also has been very concerned for the people in Haiti - she asked if some of the kids could come over and live with us - she would share her room. Our sweet girl has a heart of gold.

That's all for now - I hope everyone is off to a great start this year - I will resolve to write more regularly now that I'm off and running!