Today when I opened up blogger to write this week's post I saw that the counter is now up over 100,000 page views. That's quite a milestone so I'd like to thank all my readers out there. Ultimately I blog for myself and would continue if no one read it but it's still nice to have readers. Many of our friends and family are too shy to comment but last week my dear friend Kelly (we've been friends for 27 years, crazy huh?!) surprised me by e-mailing me after seeing the video of Ainsley picking up cherries. She's busy and sometimes I don't hear from her for months so I was surprised to find that she reads it regularly. Steve and I had dinner at her house Saturday and we chatted about Ainsley and the blog for a bit. She (and some others) have told me that they are enjoying the Happiness Photo Posts, which was nice to hear since I was having my doubts. I started this blog in 2008 to update friends and family during Ainsley's medical trip to Cincinnati. I really didn't have a long term plan. Sometimes I feel a little weird about having all this personal information out there for the world to see but at this point there is no turning back and I have been contacted from time to time from parents of medically complex and special needs parents who tell me that it's helped them in one way or another and that is so rewarding.
I can't say this enough. I really couldn't have made it this far without the support the Tracheostomy.com forum. When I need understanding they are there. When I need information they are there. But as my mental state has become more stable I also spend time there to "pay it forward". Last week there was a post from a new family about how overwhelmed they are, they were asking for reassurance that it will get better. In the beginning there is so much pressure it can feel like your life will never be good again. That is the great thing about this group. We KNOW how hard it is in a way others just can't. We all testified that YES it does get easier even though it is not easy! Members told me that then and they were right! Someday this family will look back and be amazed at how far they've come and how well they've adjusted.
As May approaches and we prepare to fly to Cincinnati again 4 years later it is natural to reflect a bit. Foolishly, since Ainsley had no serious airway diagnosis, just stridor which is a symptom, we thought it would just "go away". The local doctors told us she would likely "outgrow" it, so we watched her for signs of "outgrowing". And here we are 6 years later still watching. Now I know that that lack of a serious problem is actually worse than if she had a serious airway problem. If that were the case she'd have had airway surgery years ago. So having a better airway is actually worse than if she had a clearly bad airway. It is very difficult for the doctors to treat a patient when it's not clear what the exact problem is. Surgery might help, but it might not, so it's a big risk with an unclear benefit. Since the doctor we are going to see, sees more complex airways than any other pediatric otolaryngologist in the world, we hope that he will have a firm opinion one way or another. He was candid in the past and had the courage to tell us what other doctors wouldn't "You know that she's not going to get her trach out any time soon, don't you? They told you that didn't they?" He was right then and I hope he'll be right again whatever he has to tell us. We are excited to finally lay this issue of surgery to rest.
The great thing is that with time I have learned that we will be okay no matter what. Especially if we stop to appreciate the good in life. It can be difficult when you are "on the countdown" as we've been so many times for surgeries, procedures and important appointments. The Happiness Project is helping me stay more conscious even as we check the days off on the calendar. I hope you are also enjoying the photos and a little glimpse into our days. I'm just amazed I've been able to keep it up this long and I'm looking forward to seeing the year as a whole.
Daily Happiness Photos - Week 17
04/23 Leg Hugs
Next to holding the hand of my child(ren), leg hugs have to be my favorite thing. When your children are small and they grab onto your legs and won't let go you can't help but feel the love. I've been the lucky recipient of a lot of love lately.
04/24 Daring Feats of Bravery
A week later I am still so impressed that Ainsley cruised the kitchen picking up cherries. She has low tone pronation and hyper-mobile joints. What the heck does that mean? That her ankles are unstable. That makes it hard to stand because her feet roll in. And that makes the feat of transferring from one surface of support to another a huge act of bravery. And it makes it hard to walk but she tries anyway. I'm so proud.
4/25 Cherry Blossom Snow
I can't help it posting about the hammock again. The kids are still SO HAPPY in the hammock and it rubs off on me. It's been hanging since January and it's still the most popular seat in the house(get yours here). I admit it gets a little tiring refereeing who gets to sit in it but just look at the benfits. Who would think Ainsley could get into this position by herself?! Yes it scares me, but it's so GOOD for her!!! I love the wicked pleasure she gets from being able to do something dangerous that "mommy doesn't approve of". The smile...the giggles....even the fact that I have to worry about her getting hurt....it's fantastic!
I grew up a reluctant gardener. Forced child labor actually. For years I hated gardening but I guess it must have rubbed off on me some. I love beautiful surroundings for the way they make you feel, both inside and outside the home. And so I garden because I like the result. My gardening philosophy is if it doesn't kill it it will make it stronger. Most of the time that works for me, but not with hostas. I would buy them and no matter how careful I placed them in what I thought would be an ideal location they'd just be gone by the next year. So I am thrilled that this yard comes with some of the biggest most beautiful hostas I've ever seen. And so far, I haven't killed them. I love how they look as they emerge in spring, so full of promise.
04/28 My Personal Shopper
My sister Sheryl is an extreme couponer. She is addicted to the hunt of finding items for free and I am a lucky recipient. She did training so she can provide respite for us and came over tonight to watch the kids, laden with free or nearly free items: photo paper, batteries, razors, Clorox wipes, body wash, almonds, salad dressing and shampoo. She scouts out the best prices on other staples like tuna, chilli, and refried beans and brings them with her. It's as close as I'll ever get to having a personal shopper. I feel a little guilty at the time she spends but I think it's fun for her and I do appreciate it.
04/29 Borracchini's Cake
My brother James is a simple guy. He has a progressive form of muscular dystrophy and over the years it has become physically difficult for him to do many things that the rest of us take for granted like sitting down and standing up, getting in and out of a car, walking etc. We invited him and the rest of the family over to celebrate his birthday. It is a big deal for him to come over. His only request for his birthday was a cake from Remo Borracchini's, an Italian bakery that has been in Seattle for 90 years. We've got many delicious cakes there over the years. The only problem is we now live 20 miles away in Redmond. The drive into Seattle Saturday night on I90 was stop and go nearly the whole way because the 520 bridge was closed and a car was broken down which made a long drive even longer. The bakery supervisor agreed, against policy, to charge my credit card over the phone and met us at the back door after closing. She's got some good karma coming her way. My brother got his cake and all were happy.