Getty Owl Foundation

Oh What A Time We Had!

From Kate:

Over the weekend we had the pleasure of spending some time with Hayden and her parents and her grandparents. It was an amazing time.

The entire week building up to our departure on Friday was one of terror, too be honest. What if Getty desats? What if we forget something? What if I am not able to get over my extreme anxiety and I can’t even relax? What if the car breaks down? What if the battery inverter that we depend on in the van stops working? What if we get into an accident? What if Getty gets sick? What if she gets a plug while traveling, perhaps a bump on the freeway knocks something loose in her lungs and we need to resuscitate her in route? What if, what if, what if?

Well I am here to tell you that NONE of those things happened. Getty slept the entire way to their house. Even Cooper enjoyed snoozing on my lap during the trip. Mark did a wonderful job of driving the ship and I even got a chance to read a book? I am still shaking my head in disbelief.

I can tell you that there is something very special about spending time with any SMA family. There is an immediate connection that really cannot be described, just felt.  We share some very deep emotions that we have all felt but don’t need to even talk about, if that makes sense. I have nothing to compare it to because I have never felt tragedy, love, understanding, determination, and compassion since SMA came into my life. So it is kind of an unspoken feeling and respect for one another that I think makes our families bond the way we do.

So when you can physically meet each other, it makes it that much more complete. Jennifer and Chris, I hope you don’t mind me saying this, but I am convinced that you are by far the best hosts in the universe. 🙂 Our coffee cups never went dry. That in itself wins you 5 stars. 🙂 But in all honesty you gave all four of us (Cooper included) a chance to just relax. We haven’t had that since, seriously, back when we went to Monterrey over a year ago. We felt like we were in loving hands all weekend and we cannot thank you enough for that. So thank you.

So Miss Getty and Princess Hayden got to spend some great time together. We had the girls laying next to each other as much as we could. They had a great time watching some shows together. Hayden has a favorite show called Wonder Pets. We have since watched that show at home and I think Getty is starting to take to it. Hayden is a princess through and through and we feel like Getty is a princess in training but certainly got some good tips from Hayden. Her bedroom is just magical.

Spending time together all weekend and getting to know each other more was really rewarding for us. I know since we have been home, Getty is a lot more verbal with us. She is starting to use her eye brows to let us know that she likes something and doesn’t. Isn’t that funny, I have been trying to work on that with her for over a month, yet she spends a weekend with Hayden and absorbs it immediately, kids!

There were several moments that I had to stop and really observe Getty watching Hayden. I could just tell she was in awe of her and how she communicated with her parents. There were several times that they talked to each other and Mark and I joked about what they must be talking about. Plotting about something. 🙂

It was an amazing three days, no doubt about it. Thank you Hayden’s grandparents. We enjoyed getting know all of you as well. Shelley you make a mean brunch. Thank you.

It is one thing to meet SMA parents online to gain and offer support, but it is a whole new experience to meet families in person. This past weekend kind of filled Mark and I up with even more hope and comfort that we are not alone in our fight for our kids.

So thank you Calafiore Family. Hope to see you soon. Chris, Cooper already misses you. He is starting to demand that same amount of snacks you spoiled him with. 🙂

Here are a few pictures of our lovely ladies.

Thank You Miggy!

From Kate:

Another SMA Mom mentioned a while back about a blog called This Little Miggy Stayed Home. Thank you Erin. 🙂

Miggy writes about her family, her two beautiful girls, art, and “anything that strikes her fancy.” Her Friday posts are dedicated to spotlighting children with special needs. I thought this would be a positive way to introduce her readers to Miss Getty, show some light on SMA, and give a mom perspective on loving a child with special needs. I emailed her and she was gracious enough to interview me and select Getty as one of her February “Spotlights”. My biggest regret is that I was not able to post this earlier. Miggy my apologies.

I hope after reading the interview you continue to follow her blog and to check out all of the incredible kids and their families that have graced her Friday Spotlight.

Here is the interview.

I want to thank Miggy for the interview. There were some questions that I personally had not asked myself yet on this journey and I appreciate her ability to pull some thoughts and feelings that I think I have been sweeping under the rug.

I would encourage anyone that has a special needs child to contact her to perhaps obtain an interview, so your child can get a Friday Spotlight. She was very personable and I enjoyed working with her.

Thank you again Miggy.

Our Little Artist and Operation Duck Pond

From Kate:

Before we moved, Mark and I put together some non-negotiables of what we needed in a house.Here was our list.

1. Space

2. 2 Bathrooms

3. Space

4. Space

Our old house was almost getting dangerous for Getty. The hallways and bedrooms were very narrow and getting Getty in and out of the bathroom started to become a hazard.

We came across this house in a neighboring city and just fell in love with it immediately. It covered all the items of our list perfectly. What we didn’t realize was that there were some added features to the house and to the neighborhood that made moving even more awesome.

The kitchen and dining room are kind of one and so there is tons of space for what we call Getty’s Art Corner. She has space to have a easel and a bookshelf for her books. paints and markers, etc. It is also big enough so we can have her PVC pipe gym to hold her arm slings so she can rock and roll on activities.

We try to get her up in the arm slings at lest once a day. Today she was using her markers to draw a beautiful picture.

I captured as much as a could. She is laying on her 8′ wedge in her arms slings with a marker. There is also a amplifier next to her with the mic near her mouth. We are trying to encourage her to talk more and the thinking is if she can hear herself that might encourage her to talk more.One more thing. I don’t know if this is a two year old thing, but when she sees that I am watching her do different projects she gets a little sassy, as if to say, “Mooooooooooom, stop watching!” I love it.

While we were moving into the new place, we started to realize all of the great perks in the neighborhood. 1st and foremost, there is a Target about a quarter of a mile away. Dangerous! But most importantly there is a school two blocks away. The school Getty will be going to when Pre-school comes to call. Our neighborhood also has a cool duck pond. We have hung out there many times to feed the ducks. One night Grammy and Papa came with us and we all had a great time. Some of the geese were a little more aggressive than others, but all in all I think everyone got fed. The first time we went, Getty was super quiet. We can only imagine how much she was taking everything in. And as we began to go more often, she started to chat more.

That’s Life

From Kate:

We are really starting to get back into a routine at the new place which is proving beneficial for all three of us. Getty gets two full treatments, one in the morning and then one after she wakes up from her nap around 5pm. Once Mark is home we are able to pass the baton and that gives him some special Getty and daddy time and that gives me a chance to lace up my running shoes and get in a few miles of what I would call respite.

So last night I got back from my run to be greeted by the sweet sounds of coos and Frank Sinatra. I had to go investigate and what I saw was just a beautiful moment. I had to video it. Enjoy.

And again, I apologize for the background singing. I know I can’t sing, but hey it is Sinatra, how can I resist. 🙂

Avery’s Bucket List — Avery Lynn Canahuati 11/11/11 – 04/30/12

We are deeply saddened by the sudden passing of Avery Canahauti due to complications related to Spinal Muscular Atrophy (SMA). Her parents cared for her and made strides in raising SMA awareness around the world. Our thoughts are with the Canahauti family. We hope Avery experienced love and joy through Avery’s Bucket List.