We did it! We successfully pulled off a full blown auction with a live band to raise money for Elin's medical and therapy expenses.
After it was over people were asking me if I planned to do it every year. I think I gave them my "are you freaking nuts" facial expression and proceeded to explain to them that is the equivalent of asking a woman who just gave birth if she plans to have another kid? I need a break- this was an INSANE amount of work but all worth while in the end.
Of course I had help, and lots of it. Not to mention the amazing generosity of our family's, friends, and clients with all the auction item donations and cash donations. The highlight of the night for me was when we brought up all Elin's "team" - her therapists, para, and teacher and they received a standing ovation from the crowd. I was so touched by both the crowds reaction and all of them giving up a Saturday night and attending our event.
We came out of this with our heads spinning given how much people were willing to bend over backward to help and also open their checkbooks to enable us to provide a brighter future for Elin.
We had over 60 silent auction items and 2 live auction items all donated or curated from people we know. We had an amazing video (seen below) created by a master videographer friend. My dad's band Larry 2.0 played after the auction closed and the night ended with a bang.
Our goal for the night was reached and completely obliterated. We were able to buy Elin the Litegait and treadmill so she could have this amazing equipment available to her whenever we want. It is now a permanent feature of our decor. The bright primary colors go really well with our modern theme (NOT!) Who are we kidding- we don't have a theme- we have kids
So obviously I've "fallen off the wagon" as far as blogging regularly is concerned. Kids, jobs, lives in general just take way too much time.
I am going to summarize our last year in series of short blog posts so they have their own titles and appropriate content.
Here goes....
Our sailing adventure was 100% a success. Did we sleep much.... no, but we had a great time. Elin absolutely loved being in the wind and on the water. Anya loved fishing and sailing and generally hanging out relaxing as we cruised from port to port. Myles and I hardly rested but we actually enjoyed all our time messing with the rigging, anchor, coolers, engines, and stinky head. It was invigorating and we hope to be able to do this same thing again next summer.
We spent a majority of our time in the Canadian Gulf Islands. We visited some of our favorite harbors and enjoyed some new spots as well. We spent time are Rosario where we were married 13 years ago... yes 13 years. HOLY COW! How did that happen?
We did have one night with high winds on anchor and no sleep but generally we felt very comfortable on our chartered 34 foot sailboat. It worked great and since we were used to a 27 foot vessel prior to this 34 feet felt like a luxury yacht.... well not really but it was spacious.
We had grand plans of Elin and Anya sleeping together in the V-berth up front and us in the rear cabin. Elin is just too dang loud! She likes to wake up at 4:30 am and she would like to play, eat and generally have everyone awake in the harbor to play with her. This was not fun but we were able to get her to fall back to sleep most mornings by bringing her into our berth and having her sleep on Myles's chest. (Secretly Myles loved every minute of this BTW!).
We all survived and even left wanting more so we shall attempt another crazy trip next year if circumstances allow.
After returning from our trip in early August the rest of the summer whizzed by. Many weekends up at the cabin or in Gig Harbor and then school started.
Anya started second grade at Hazelwood Elementary and Elin is her third and final year at her integrated preschool class at Meadow Crest. Both girls are happy to be back at school and I'm pleased to have a routine again.
I have to admit this summer was my very best so far with two kids. I enjoyed having less structure with both kids home and flexibility to do what we wanted when we wanted. I believe both girls had a pretty great time as well.
Other exciting news! Elin has started to ride the bus to school. It comes to our house and picks her up and drops her off. She rides on board strapped into her adaptive stroller and locked into tie downs in the buses rear. She has a para-educator- Mady- on board to watch for seizures and generally keep her safe as she rides to and from school. It is really an amazing thing to see her take off in the bus from our house. She is getting to be such a big girl.
Also- we are throwing an auction/dance and fundraiser in Elin's honor on October 21st. If you don't know about it and want more info please contact me.
Schools out for the summer! This was an exciting idea until the first week hit. The kids are home with me EVERYDAY! Everywhere I go they are with me... in the car, in the store, in the bathroom..... anyway it's taken some adjustment but I'm doing better now that we are into our 3rd week of the new program.
Elin is continuing her private therapies over the summer and increased their frequency since she doesn't have school. She basically has some form of therapy appt everyday M-F. She is currently involved in PT, OT, Speech/AR, and hippotherapy (horse PT). She is a busy girl. She has also started crawling much more. Just the other day she crawled all the way out our sliding door, off the patio, through the lawn to reach her swing. Since this I have purchased her some kneepads however- crawling in shorts is not ideal.
Anya turned 8 in June. This is incredible. She is such a big kid now, relatively speaking. She is majorly into Harry Potter and had a Harry Potter themed birthday party. It was an enormous success and thanks to help from both sets of grandparents we pulled it off.
Elin is turning 5 in two weeks. This is hard for me to believe. So much has happened in her first 5 years and our family has had to change and adapt to a new set of rules and expectations. I can say for certain we are all better human beings because Elin has taught us so many things about being human. Empathy, sympathy, despair, grief, pure joy, and unconditional love. Thank you Elin, for giving us so much!
Our summer plans include trips to the cabin and Gig Harbor to play at the beach, lots of time in our backyard playing with friends, and we rented a sailboat for a week up in the San Juans. Anya has swim lessons, a week at Oma's and Miracle Ranch, Camp Sambica and horsemanship camp at Kelsey Creek Farm. We will be busy having fun and enjoying the summer we so definitely deserve here in Seattle.
Myles and I have joined forces and are teaming up to help clients eat, feel and move better. I recently got my nutrition certification and am trying to desperately to get some time away from kids so I can work a little. It's nice to have some adult time every once in a while and also to feel like you can contribute to the family in other ways then just feeding and dressing everyone.
Check out our new website! Arete Athletics
Obviously blogging has taken a back seat to life. Oh well, at least I have my priorities straight.
Quick recap of the last few months:
We went to Cabo with Susie and Karl for 10 days in early December. It was bliss. Elin was seizure-free and Anya swam with the dolphins- 'nuff said. Christmas was a crazy blur but a wonderful time shared with family and friends.
We just went to Packwood/White Pass for a long weekend of skiing. Susie stayed with Elin while Myles and I skied with Anya. It was epic! (as Anya would say).
Where are we..... well both girls are doing really well. Anya is enjoying first grade. She is busy with gymnastics, soccer, skiing, playdates and now she will be in the school play. Also she has no teeth. To be fair she has some teeth just no front teeth. In the last two months she has lost over 5 teeth. The tooth fairy has been very busy and is going broke.
And Elin- well Elin is good generally. We have better control of her seizures. The CBD seems to have had a remarkable impact on the severity and frequency of her seizures. It has allowed us to reduce her anti-epileptic medication to almost nothing. So that's an incredible achievement. BUT- she still has them.
With the reduction in medication she has come alive. Her personality is blossoming and she is just really an amazing person to be around. She is so happy and loving and kind. It's refreshing in our current political climate- she is a breath of fresh air. She giggles and is super ticklish. She LOVES her sister and will give those she trusts and knows GIGANTIC hugs and love pats. Someone who had just met her and spent a few hours with her described her as "delicious". I couldn't agree more.
She is trying to communicate. She has word approximations and I know what she is saying or signing most the time. We are looking into getting her tested for an AAC (augmentative and alternative communication) device. Think highly specialized iPad you can program for her specific communication needs. Her gross motor skills are hindering her capacity to use such devices so far so we are trying to figure out a good fit for her. It seems as if she really would prefer to talk or sign though which we would prefer as well.
She has continued Hippo-therapy at Little Bit Therapeutic Riding Center. "Her" horse Star and she have an amazing connection. I almost cry every time I watch her ride. It's one of the most incredible things I have ever seen. If anyone ever wants to come out and see what this is all about and/or just have a touching experience let me know. The human-animal connection is strong in both these girls.
She is enjoying her second year of preschool at Meadow Crest. She has the same teacher and para-educator so they know Elin pretty well at this point now too. The school district has decided to allow us to keep Elin in preschool for one more year. We didn't even have to push for this (although I was prepared too if need be). The Renton school district has been amazing in partnering with us to address all of Elin's educational needs.
Sleeping... ah sleeping... not happening yet. I figured once we got Elin off all or most of her meds her sleep pattern would mellow out and she would start sleeping through the night. I mean she is on cannabis for god's sake... no such luck. So she had a sleep study. Myles took her in and spent the night with her. She actually did quite well despite looking like a mummy. We are still waiting for the results and hope they can shed some light onto why she wakes in the middle of the night 90% of the time and won't go back to sleep. WE ARE TIRED!!! We are used to it now, so if you see us and we look tired, it's probably because we haven't slept through the night in 4 1/2 years... just sayin....
Sorry- I kind of fell off the face of the earth with the start of school. This summer we were fortunate to have a fantastic caregiver start with our family but she had to return to school in September. All of sudden I didn't have any free time at all to write a blog post- go figure.
Both girls started school quite happily. Anya is in first grade and ended up in a class with many of her friends so she was psyched. Her teacher is pretty amazing too so we were pleased with the placement. Elin is back at Meadow Crest in the same classroom and with the same teacher and para-educator (one on one) like last year. Her first day back she was over-joyed and very boisterous about being back in her class again. It was awesome to see her so excited!
Elin was able to start up with hippotherapy again at Little Bit Adaptive Riding Center. She absolutely loves to ride horses. It is such an amazing thing to see the way she connects with the animal and how the horse responds to her energy. I look forward to taking her every Friday.
For Elin most therapy is REALLY HARD WORK! But horse therapy is totally enjoyable for her. She gets an amazing workout sitting up on the horse for 30 minutes and she doesn't even know she is working. Now if I could just invent some sort of exercise regime that made adults feel the same way I would be a billionaire!
Elin averages about 4 different types of therapy sessions a week outside of school. She has private OT, PT, hippo and AR (aural rehab- akin to speech therapy for kids with CI's). So we are busy pretty much everyday. Fitting her regular medical appointments around all this is somewhat of a challenge. I feel like I am a personal assistant trying to manage both these girls schedules.
Anya is playing soccer again this fall and I'm her coach. It is a great opportunity for me to feel like a "regular" mom and for Anya and I to have an activity that is completely our own. Her team is comprised of many of her friends and they are all 6 and 7 years old. Trying to coach these little spit fires is a bit like herding cats but I love it. They are fun and seem to be completely loving soccer despite our rather (uh huh) terrible record. So I guess my goal of having the girls play for fun and not worrying about winning or losing has been met.
As far as very exciting news for the fall, we welcomed in two new baby girl cousins/nieces. Christel and Jorge welcomed their daughter Stella on Sept 29th and Natalie and Scott welcomed Cora one week later on Oct 5th. Anya was eager to hold both baby girls as soon as possible. It's hard to imagine my little girl was that itty bitty once too! I LOVE babies.
My dad sent this link to me. I love it. It is so similar to our journey over the past 4 years with Elin. And we are on the other side seeing through the clouds now as well.
