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.
Friday, May 28, 2010
Wednesday, May 26, 2010
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.
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.
Thursday, May 6, 2010
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.
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.
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