May 28, 2010

Too Much To Do & Finally A Hip Surgery Update

Sheesh! I guess I'm falling into a habit of posting on Fridays. I'll try to do better so I'm not posting these mega-posts. Life is so busy for us. Just caring for 3 kids is a job and then you throw in Ainsley's special needs and medical issues and you've got  a dilemma because not everything can get done. Things have fallen behind in many areas.
  • the yard is terrible our lawn is almost 100% weeds and the beds are infiltrated with grass and weeds
  • the house rarely gets fully cleaned, mopping and dusting rarely happen
  • the kids schoolwork (yes they have homework every night) doesn't always get reviewed just this week I found a letter from Evie's math teacher from November.
  • there is more junk accumulating than our storage areas can hold
  • the laundry piles up and sometimes my kids have to pull dirty clothes out of their hamper
  • I never order the medical supplies according to the schedule, which is what I should be doing right now since it's order week
  • our bills get paid when I find time and sometimes that means they are late
  • I have tons of paperwork that need to be organized (Ainsley's medical binder, the kids' school paperwork, receipts, bills etc) and now there is so much I don't want to do it
  • I haven't been to see a doctor in 10 years (other than obviously the OBGYN, okay okay and my endocrinologist while I was hyperthyroid)
  • we have more incomplete home improvement projects than you can imagine (our house turns 100 years old in 9 years) so I won't list them but on top of the current list is that our floors have deteriorated to the point that Ainsley twice has got a sliver entirely up her big toenail all the way to the nail bed (OUCCCHHH!)
  • Steve and I go out on a date about twice a year, usually to someones wedding and the school auction fundraiser
  • tons of things that are on the to-do list like draw up a will, setup a trust for Ainsley, start a college savings plan, create a budget, save for retirement, just little unimportant things like that
  • I love to take photos but don't have time to manage them
  • I am trying to start a business (something for myself and my future) but I really don't have time so I'm sure that will be a failure
  • I frequently have things I'd love to post on Ainsley's blog and I like to write and find it therapeutic but don't have the time......
....except on Fridays. This is the one day I have a stretch of time alone with Ainsley before the kids come home from school and need a snack and to do homework, start asking me for ABC and I have to chase them around cleaning up the stuff they pull out, before making dinner, squeezing in something fun if we're lucky and then starting the bedtime routine. During those Friday hours I try to work with Ainsley in the many areas she needs help, teaching her words, working with her AAC, trying to "eat", working on capping, learn colors, animals, gross motor (got a reprieve on that one for a few months) like walking and fine motor like holding a crayon, doing a puzzle etc. And MAYBE enjoy a few moments together.  But I also have to do all the things on the list above. And somewhere in there I'd like to enjoy my life.

I was thinking about things this past year. I had an epiphany: Things only happen when you have the intention and a plan. If you aimlessly work on one thing and then another with far more to do than is humanly possible then nothing gets done well. I've been working really hard to check some big things off the list and gain some peace of mind from tying up some of the many loose ends that I sometimes feel are swirling around my head like Medusa's hair. We've done pretty well. We had the house painted, had the chimney tuckpointed and a gas fireplace installed because our chimney was falling apart (a serious earthquake hazard since bricks were just laying on the cap) and the fireplace was unusable.  That's taken a chunk of money and doesn't leave much money for hiring people to do all the other things on the list (like replace the floors so the children aren't getting injured by using them to crawl or walk).

Maybe I really need a professional to examine our lives and to-do lists (there are many) and set a rigid schedule so the schoolwork, paperwork, chores, upkeep and therapies all happen. I can't seem to find the time to meet with my husband and figure it out ourselves. But I'm not a schedule person and I think it would kill me to live like that. So we do the best we can winging it and hope that somehow it will be good enough even though it's really not.

I want more for my kids. I want to be present. And happy enjoying the moments instead of feeling like my life is one giant to-do list full of things I don't want to do. I realized that my kids are growing up. And FAST. Things I dreamed of doing with them weren't happening. One of which was having a small vegetable and flower garden. Instead we have piles of unused stones, dirt and weeds where we had planned to grow vegetables. I think it was rather symbolic of our life.

I realized that we need serious help getting the yard back into shape from years of neglect from having other priorities that had to come first.  But who to hire? As luck would have it I bid on a garden clean-up service at the kid's school auction. The beauty of this is that I was supporting the school and getting something I REALLY needed. I called them the same week, they came out and took a look. The lady was very nice and I had hope that this would be one area of our life I could get back under control with their help.  I got an unexpected e-mail that they were coming on Tuesday instead of Wednesday as scheduled. I was meeting with someone about a new AAC device for Ainsley at that time so I couldn't be there. Things didn't go as planned and essentially they didn't do the weeding I'd expected and they pruned and pulled out plants I wanted left alone.  Without going into all the ugly details, which I already shared with friends on the trach forum, I ended up spending a lot of time I didn't have out in the yard fixing things and later energy dealing with the aftermath this week. The gardener has since offered to come back out and repeat the 10 hours of weeding so perhaps there will be a happy ending.

In the process I had Ainsley out playing on a blanket in the yard and while I was pulling grass out of one of the beds she pulled out her trach. YEP! This makes the 4th accidental decannulation. Yard work has always been scary for this reason. Having your hands covered in dirt (even with Nitrile or waterproof gardening gloves on) is REALLY not good if your child needs suctioning and is even worse if the trach comes out by mistake. Luckily she didn't drop the trach or it could have had a very different outcome. I was able to put the trach back in and go back to my weeding. Things have changed a lot since the days I first received trach training and was terrified by this artificial airway. Still I need to be more careful.

Aside from the gardening drama this week, the accidental decannulation, and looking at AAC devices for Ainsley I also got to tag along to Adrian's field trip to Alki Beach which was fun. I took lots of pictures of the sealife and after lots of searching we even found the animal he's studying: the chiton. We are lucky to live in this beautiful area. It's been a busy week. I apologize for not updating about how Ainsley's been doing since the cast removal.

The first days were tough as I'd said. But things did indeed improve by the end of that first week. She starting being able to sit independently. Since the goal was to get her out of the brace during the days within 2-3 weeks she surpassed that goal getting there in about a week and we even started sending her to school without the brace by Tuesday. Resilient. That's our girl!

We also had some high points such as Sunday when.....

Steve walked into the living room to find Ainsley had covered her doll with a "blanket" and was holding her up on her shoulder like a real baby.

See? Sitting and playing on the floor. Wow, it's been a long time.

Despite having to work again for part of the weekend Steve was able to fix both the front gates which were broken. Yea! Thanks honey, you're the best!
Oh yeah, another thing I've been spending my time doing.....brushing hair. I will be so glad when she's out of this wheelchair! Can you believe this?! She rubs her head against the pillow. Can't you almost see her as a punk rocker in high school?

In case you're wondering: what's a chiton? This is a Mossy Chiton.

The kids said this was a mommy starfish and its babies.

They were everywhere!

And the colors were amazing. Purple, pink, salmon, orange.

It was low tide. There was so much to see. Jellyfish, moon snails, sea anemones, sea stars, crabs, limpets, chitons, hermit crabs, sea slugs, giant barnacles and more. Perhaps I'll have to create a slideshow. 

Ainsley's been doing this little move for a week or so. We figured out it means DVD (that is actually the sign). Which is very cool. She learned it from watching Signing Time. The girl is steadily building up quite a list of signs. Her communication has increased greatly since the hip surgery. I'm really looking forward to getting her mobile again. One thing I know for sure: time passes quickly and she'll be on the move before you know it!

Have a great weekend everyone!


  1. How about calling your local boy scout troop and see if anyone is working toward their Eagle and looking for a service project. Someone might come out and do your whole garden for free!

  2. Your list looks somewhat like mine! I'm actually good about ordering supplies and making appointments, etc...the day-to-day stuff is in control----it's all the other stuff that I can't get to. I am years behind on scrapbooking, organizing pictures, etc....have a TON of paperwork to file, including such important things as IEPs, etc. It's hard to find time, especially when dealing with day-to-day stuff. We, too, have had 4 accidental decannulations. Fun stuff. ;-)

  3. Oh Susan,

    Abso-freaking-lutely when they walk and talk, we will get together. They can hold hands and walk off into the sunset while we laze in our lazy lawn chairs sipping margaritas out of straws that are actually their spare trachs. They will be singing and walking and dancing and we will be cheersing and clinging our margarita glasses. How FUN would that be.

    Then we will talk about our dust bunnies that built up under our beds, couches, and other furniture and how we decided to let housework slide and how everything still turned out good because we got to spend more time with our children. They won't remember how shiny the floors were but they'll remember us coloring pictures and going on their field trips right?!

    Weeds, schmeeds that's what I have to say about that. Are they as tall as you yet? No? Then you still have time right?

    Doctors?! I never see them either. Bad, we should!

    Little Ainsley Mama you have melted my Mama heart even more loving your baby. I am teary eyed over the cuteness!

    Watching husbands using man tools...LOVE!!
    Mr. Pedersen took two trees out of our front yard and I melted the whole time. I even have hundreds of images to look at after.

    I want to live by water,and look at cool beautiful starfish. Interesting images which tells a more interesting story of a Mama spending time with her child on a field trip. You rock Mama!!
    Screw the dust bunnies and suck the very marrow out of life because you are right it is going much to FAST!

    I command you and Mr.Steve to go out on more dates, no talking about children, discuss yourselves. DO IT! Find time. Remember those cool chinese containers from the hospital on your birthday?! Get take out sit on the hood of the car pump the music, dance, sing, laugh but only after you have eaten out of those cool chinese food containers. FUN!

    Nibblin on sponge cake
    Watchin the sun bake
    All of those tourists covered with oil
    Strummin my six-string
    On my front porch swing
    Smell those shrimp they're beginnin to boil

    Wastin away again in margaritaville
    Searching for my lost shaker of salt
    Some people claim that there's a woman to blame
    But I know it's nobodys fault

    Hear's the song in the background whilst we laze on our lazy lawnchairs watching them walk and talk and run and giggle.

    Cheers my friend!
    All the love in the universe from me to you.

  4. Hello from one of your silent lurkers! Don't feel too bad about all the things you have to do and want to do right. Your plate is really full and overflowing! I have only one child, granting he's fully dependent on us for everything because of his SMA, and our house is rarely in order. You're a wonderful mother and I LOVE your Ainsley!!!

  5. oops! am I a silent lurker too?? I guess if my kids know who Ainsley is, I am. ;o) Your list. =( If you were my neighbor I'd send my boys over right away to get those weeds, and I mean that!!
    The signing hands pictures are precious!!!!
    Hope you get lots accomplished this week...

  6. PM'd you on the trach forum.
    I lost your email.