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.