We were thrilled to have Canadian visitors today. SM”Eh” Dad extraordinaire, Brad Fisher, and his lovely 5-year old daughter, Shira, swung by Sacramento on their way from Victoria, BC, to Disneyland.
We love meeting SMA families. Despite having never met before, other SMA families instantly feel part of our family. It just seems so natural and relaxed.
For example, after a quick tour of our new place, we ended up shooting the breeze over lunch … not at the dining table or even in the living room but … in Getty’s bedroom. We sat on Getty’s bed and in camping chairs.
We seem to have so much in common … right down to our underwear. Don’t ask.
Getty and Shira really enjoyed meeting each other. Shira was quite chatty and fell in love with the pets. An all-too-brief, yet good, time was had by all.
Thank you for stopping by and making our day! Safe travels!
From Mark & Kate:
We are the parents of a beautiful little girl, Getty, with Spinal Muscular Atrophy (SMA) Type 1. She is perfect in every way imaginable, as we would like to think any parent would say about their child. Even though our normal might be different from others, we are, at the root of it, no different from any other family.
When Getty was first diagnosed, we experienced complete and utter shock. We had so many things to decide so quickly and we suffered through the anxiety of not knowing if we really were making the best choices for Getty.
We researched, asked questions, connected with the SMA community, and became aware almost overnight that so much research had already been done and was still going forward.
Despite the lack of information from doctors, we learned of a variety of different SMA care options. One thing we both felt throughout our first months as SMA parents was many families were pushing research toward a cure. Through these families, we found HOPE and belief that anything was possible.
The care options we chose for Getty may or may not be the same care options other families choose. We made our decisions with a lot of love, time, and what we believed was in Getty’s best interest. We do not judge anyone else in this situation, because it is their own ethical decision to make.
For our family, this has been such a rewarding journey so far, and we attribute that to Getty entirely. She is why we fight every day. She is why we get up in the morning to see the beauty in life. She pushes us to be the best parents possible for her. She helps us slow down to admire the quiet bird songs in the morning. Our lives are entirely at her command. Perhaps we are the one’s that are creating the diva and not the other way around. It is all worth it. We know SMA is considered terminal, but there is so much hope and there is so much promise for a cure that we know in our hearts anything is possible.
We can’t speak for the rest of the SMA community, but our positivity didn’t just organically come about. It was gleaned from the many SMA families who live wonderful lives with their kids. Meeting older Type 1s and their families is an out of body experience. We learned doctors are often wrong and our kids do not have expiration dates.
So here is where our story is going to take a turn. We want to preface this first by saying in no way are we judging a family for choosing the path of palliative care. We honor and respect that when any family makes that informed choice.
We learned of a newly diagnosed family about a week ago. Like all families we learn about, our first reaction is heartbreak because we will never forget the feeling of being newly diagnosed. Then we start trying to figure out a family’s immediate needs based upon what information we may have found about them. Where do they live? Who are their doctors? Is their child in the hospital? Which one? Are they getting the care they need? Do any SMA families live near them to offer support, etc.
This family created a blog called Avery’s Bucket List. They also have a Facebook page with the same name. They suddenly have over 60,000 followers and we can only imagine this is growing by leaps and bounds. The site is set up in the voice of sweet little months-old Avery with SMA Type 1, just like Getty. Avery is beautiful, vibrant, and such a cute kiddo.
From what we gathered, Avery’s family would like to complete a list of activities before Avery passes: Avery’s “Bucket List.” Some items on the list include a first kiss, going viral, getting on the Ellen Show, staring directly at the sun while trying to keep her eyes open, going tubing down a river, skydiving, etc.
Our reaction to the blog has been a mixed bag of excitement and concern. We were excited at the media attention raising SMA awareness. The SMA community has needed a family to break the media barrier to make SMA a household word. We are certainly trying all we can, but boy, it is hard to get the word out to a huge population that (1) SMA exists; (2) SMA is bad but there is hope; (3) our reality could be anyone’s reality; and (4) with enough money current research could lead to a cure relatively soon.
Our concern grew when “Avery” suggested that a life with SMA amounts to nothing more than doctor appointments and crying. The family has deleted certain words from the blog, but one part formerly spoke about “schlepping” SMA children around to doctor appointments. This change apparently only happened after a fellow SMA mom suggested the edit.
Listen, SMA is a very hard road, no doubt about it, but after reading their blog more, we came to feel so deflated. We think if we didn’t know anything about SMA and this was our only exposure, we wouldn’t think there was any hope whatsoever; all SMA encompasses is pain, misery, and a torturous countdown. Having said that, it is their blog and that is that.
However we believe there is something more that this family can do: spread a hopeful message about SMA in general. We just want to say to Avery’s parents, you have such an incredible opportunity right now with the media coverage you are receiving. You have the ability RIGHT NOW to do so much for all those affected by SMA. Just the slightest mention that there is HOPE would go such a long way. Mentioning that research is moving forward and needs funding would go a long way.
You have this moment to make a huge impact to benefit so many families who have struggled and sold lemonade, baked cookies, organized walks and runs, done concerts, sold Tupperware, asked family members for donations, held rummage sales, washed cars, organized spaghetti feeds, shaved their heads, and thrown beautiful galas for the sake of our kids. We do this with HOPE to make a difference in curing SMA.
This is your time now as an SMA family to help continue this momentum to a cure. It may only take a couple of sentences to make a big difference.
A message of hope will enhance, not inhibit, The List. Wouldn’t it be awesome to cross off “Cure SMA” from The List before Avery’s last day? It is possible, with the right message, Avery will experience a cure.
I have a feeling for any little one, getting their hair cut is a feat in itself. Moving around as you try to cut it just right probably makes for some incredible haircut creations.
For us, it is easier to have Getty’s hair shorter. It is easier to maintain and it is easier for her to wear her bi-pap when she sleeps. So I tried once to cut it and it turned out horrible. The sides were good but uneven and then the back was longer than any other part of her hair. Just horrible. So I knew something had to be done. I needed to bring in the big guns. 🙂
Mindi has been cutting and coloring my hair for what over 3 years I think. Wow how times flies. She is very kind, generous, and talented person that has kind of been with me with the dx of SMA and the first months of shock, etc. She has always been a comforting ear. If you are in the Sacramento area and looking for an awesome stylist, you should really give her a call. She works at Salon Paisley.
So the last time I was in I asked her if she could come to our house and rescue Getty from my untalented styling. 🙂 She was very gracious and said yes.
So she came over today and it was such a fun experience. She brought Getty some stickers, which was super nice and cute. We set Getty up on her wedge an then we just carefully repositioned her however we needed to so Mindi could cut as even as possible. Getty was awfully quiet but i know she was enjoying the attention. She was also watching The Jungle Book, which also was another reason for her silence. She certainly likes to concentrate during all of her movie. 🙂
A great day indeed. Getty has a new do and it was nice to have Mindi come over and spend some time with our little lady.
Thank you so much Mindi for taking the time. I know you are a very busy lady.
This disease certainly has a way of knocking a parent down. Let me just say that now. I don’t want to bring on the usual dread of what is happening to Getty on a molecular level, simply not worth the time but with set backs come incredible celebrations.
Take last night in particular. We were setting down for the night. We were all watching Sprout and Getty was getting some great tummy time on the couch. It is a perfect time to massage her little body and get her ready for a well deserved slumber. While she was on her belly I was massaging her legs and back and just doing all I could to solicit her coos of excitement when it comes to massage. She gets so chatty on her belly. So while she watched Thomas the train, I propped her feet up on a pillow to relax.
We watched Thomas together as a family and then in the corner of my eye I could see some feet moving around like no body’s businesses. Such a beautiful sight.
A little back ground on her feet strength has been for the most part very minimal. So you can imagine our excitement to see her tootsies moving around with such vigor.
“Great Job Getty!!!!!” A big smile emerged with such a proud smile.
So here are Getty’s dancing feet.
This is possible because of her diet. The AA Diet allowing to use her energy in different places in such a way that she can use her feet, or move her head, or not be dependent on her bi-pap, etc.
If you would like to learn more about the diet, so go to AA Diet for SMA. I know the movement in Getty’s feet is only the tip of the iceberg. More is to come and this is proving to us that with some hard work and diligence, our kids can thrive with SMA. Thank you to all of the mothers who have tested the boundaries of dietary needs for our kids and pushed when still there are critics that say this will not benefit our kids. To them I say rubbish.
This entire weekend could not have been more beautiful in the Sacramento region. Just gorgeous! I hope that means that summer is coming soon, but hopefully with the same spring like temperatures. Sacramento can get HOT!
We ventured out on a walk on Saturday together. Since Mark works outside of the home now, it is hard to find time to get out after work and take a stroll as a family.
We got Getty all ready to go, Cooper was leashed and we took a similar route as Angie and I had done earlier in the week with Getty and Cooper. The dang duck pond is still under construction, so we went over to the park again to see if the swings were available, and the were. 🙂
Mark videoed while Getty and I swung for a little bit. She did really great the whole time. Very happy and she was able to control her secretions. Yippee!
So here is the video. You will hear a ladies voice in the background. She is failing to control her son from throwing bark at Cooper. That is another story all together. 🙂