Getty’s last day of trialing the particular power chair she has been using was on Wednesday. We do not know when the next one will become available for her to continue the great progress she has made so far.
I have been in discussion with all kinds of people within our insurance and other resources we can tap into. This fight is obviously not over, it has only begun. Mark is doing lots of research as well. I can google things, but he can really google things. 🙂 Isn’t that strange how one person’s search can so much more affective than another? So I leave that area of expertise up to him. 🙂
I titled this post “Unexpected” for a reason. I do try and find a title that encompasses the theme of a post, and I think this one is pretty accurate.
Getty and I drove to her last appointment for her chair on Wednesday. I was so excited that she would be having her fun “chair time” time as she always gets on Monday, Wednesday, and Friday. This week would be different though, the chair would be shipped off right after Getty’s appointment.
Inside I was so sad. As we drove, I thought about how this fight is just getting started and in the meantime we don’t know when another loaner chair would be offered to us. With RSV season on its way, I felt like our clock was running out and perhaps we might not see another one until after April or May of 2014. I was trying to keep in check, I was doing good, until I started to get Getty into all of her braces.
The OT and I were in discussion while I was putting on her braces. I got a chance to stress how frustrated I was with this process, the system, the “everything”. Knowing that Getty was having so much fun learning how to use the powerchair on her own is so exciting for her. She gets sassy with me if I do not get her braces on quick enough. As I strapped her into the chair and the necessary precautions were taken to get her on her way I was started to cry.
I was crying because honestly when it comes to Getty and her diagnosis, whatever brings her happiness, we fight for it. At that moment, knowing that Wednesday would be the last day until I don’t know when, felt like I had failed her and I just wept. I wept in front of my child and I tried so hard not to. I said to Getty, “You go have a good time with the OT, mommy will sit back here and watch you, you rockstar.” We locked eyes and I think she could see that I was visibly sad.
I sat back on a bench and I watched her get started with her training and then something unexpected happen. Usually once Getty gets the green light, she is off moving about the room. Tearing around corners, starting and stopping, listening to her OT’s commands. But this time she did not move in that manner. She didn’t move at all. She was facing me and she started to move towards me instead. I had my hands propping my head up, still with tears in my eyes and she kept getting closer and closer until she stopped right in front of me. Her OT was asking Getty to “get going”, but she wasn’t leaving my side. She just kept looking at me.
I often don’t know what Getty is feeling. I mean I can tell by her sounds, eye movement, and her overall demeanor, but usually I am guessing. She lacks the ability on her own to hug me or snuggle one her own with me, or say to me maybe “what’s wrong mommy”. But her actions at the beginning of her training said it all. She saw me sad and that was her way of comforting me. So incredibly unexpected and so life changing for this mom.
I got up from the bench and I kissed her face all over. I whispered in her ear that mommy was fine and that I wanted her to have the best day today. “Knock it out of the park kiddo, go for it Turbo.” I said. I gave her a huge genuine smile and I squeezed her cheek. My tears were now dry, my smile was from ear to ear and I was so ready to watch her take flight.
She immediately turned around and found her OT and started her training. I stayed in the background to watch her. She weaved in and out of objects. She started and stopped, she weaved right and left. I noticed Getty would glance over at me once in a while and my smile increased in size.
When the session was over, I picked her up to transfer her and she gave me a huge smile. I kissed her all over and then placed her on the stroller. A huge squeal of excitement bellowed from her mouth, to which I squealed back.
As we drove home, I thought about what had happened between us in the OT office. Getty has always been our teacher. I find that when I am not stopping to listen to her. I mean really stop to listen, I lose my center. With so much fighting and stress that comes with getting everything she needs and deserves, it is easy to get wrapped up in it. But the action and look on her face as she drove straight for me at the beginning of her appointment brought me back down. It was her way to show concern, but I also think it was Getty’s way of letting me know that this will all work out and not to worry.
Getty has always been our guide. I always say, “Getty will let us know.” And she did. It was me that needed to stop and listen.
It is now Friday and I am not stressed over logistics or finding just the right piece of literature to arm ourselves with to make our case. It will come and she will get her chair. I just need to take a breath and just enjoy life. Life with Getty.
Today seemed to be a regular day in the life of an SMA mother and I thought perhaps this would be a good chance to give the world an idea of how today has gone so far, and at this point it is only 3pm pacific time. Please keep in mind this is our life and this is what has become the new normal. Not all families endure situations like this, but I have a feeling that some may and perhaps this may help give some a chance to know that you are not alone. No one ever said this journey was easy.
7am: I wake up early to grab a cup of coffee. I take the time I can to make as many phone calls and emails as I can before Getty wakes up. These emails are all Getty oriented. Emails about her health, fighting for something she needs, finding the right ear to listen to our story and to find that one person who will be willing to join the fighting crew and help advocate with me. Usually I do not have anyone join, but I have already prepared for that, so when someone does step up, it is a pleasant surprise.
Emails of Sponsor Kits and cover letters go out to possible companies interested in partnering with us in our upcoming 3rd Annual Getty Owl Run/Walk in February. I send them to everyone and anyone willing to be a part of our mission to continue to help families and raise funds for research. Sponsors don’t fall out of trees, you have to go find them and make every effort help them make a connection to why raising money for SMA is so vital. I get more no’s then yes’s, but boy when that yes happens, it feels like I am doing something good. I feel like I am making a difference for Getty and all children with SMA. But without resolve and perseverance events like our’s just can’t have the success it has had the last two years. So you hit the pavement everyday to find that yes.
8am: Getty is still snoozing so I can sneak in another cup of coffee. More phone calls and emails. Getty is and I would argue will always be in uncharted waters. In certain areas of the US, SMA type 1 kids in particular are thriving in numbers. We are one of the only type 1 family in the area. Our primary insurance does not see type 1 kids often and to have them have a three and a half year old on their case load is a very new phenomenon. Believe me we are well aware of this. You name it, Getty has been denied it. We appeal like all denials, but now it becomes the burden of us, as her parents to justify why we believe she deserves a machine to clear her airway. Why she deserves to have a shot to protect her from getting a bad cold that most likely will turn into pneumonia. Why she should have certain procedures done to instill her safety. Some denials are overturned and when that does happen we are over joyed, but we remain vigilant because we know that something else will be coming soon and we will need to polish our armor once again for another fight.
So the phone calls and emails today had to do with trying so hard to give Getty the ability of motion. The power chair is an incredible opportunity for Getty to have a sense of independent mobility in the home. SMA is cruel enough, but SMA type 1, I would argue is cruelest. She is completely dependent upon us. Obviously Mark and I have no problem with that, but when you know there is something on the market that your insurance can and will approve to cover, you can’t help but dream of all of the possibilities. Long story short, Getty’s evaluation is coming up and I can tell you right now that Getty will not pass for approval. I am not a pessimistic person, but rather a rational one. The accomplishments and celebrations with her power chair training has been nothing short of phenomenal. Since her strength is the only reason for holding her back, there are several things that distinguish her from say a type 2 SMA child. Getty cannot hold her head up unassisted, so we use a collar to keep in place. She lacks the ability to turn her head and must rely on her fiber-optic controls to move her from left to right, forward and stop, unlike most type 2 kids that can manage to use a joystick to be far more precise with their direction and movement. These tiny fiber-optic switches are small enough and sensitive enough to allow even the softest of touches to help move Getty is all kinds of directions. Getty also has the inability to sit completely upright. So her view is a bit skewed. But with training, she has already learned how to compensate for that. She will stop sooner or turn sooner to get out of the way of an oncoming object.
Getty has grown leaps and bounds with her training. I think what has come out of this experience for her so far is that she lights up with excitement and smiles every time she is in the chair, because this is her time to be on her own. She has control of her motion. She gets to go over bumps. She gets to move wherever she chooses in a safe environment. She has never complained being in her chair, well only if we are not fast enough with getting her in and letting her take flight. She tolerates being upright for about two hours. As her mother I am in awe of what she has done so far and will continue to do.
So what on earth is there to complain about? Well I wish I could tell you that this were a fairytale story and at the end, she rode off into the sunset with her own power chair and all the powers that be helped make this happen for her. But alas we are dealing with insurance companies, so for some reading this you may already know where I am going. The evaluation she will be doing will not be enhancing her successes but pointing out her failures and in turn denying her in home independence. One really big hurdle is that Getty needs to feel comfortable with the person she is with in order to perform. We have seen it time and time again. If she does not know a person, she will shut down. It is what she may have done if she did not have SMA and was a healthy little three and half year old. If she felt unsafe around a stranger she could run to me for comfort. She can’t do that, so her defense mechanism is to shut down or refrain from looking at a stranger. This evaluation would be done by a stranger and this stranger would be commanding her to meet certain criteria. Um…….nope, not going to happen. So even though Getty is fully cognitively unimpaired by SMA and can rock it in her power chair, she will fail this evaluation. There are other things I have heard about the evaluation that I am also cringing and that is what she will be asked to go find in the room. “Go find the bathroom”. Really? Yes, Getty go find a room that you will never use in your life. There is more, but as I write this, my blood begins to boil and I cannot go to the place I was at earlier today.
In a nutshell, this evaluation was not set up with an SMA type 1 child in mind. Even speaking to several people in my 8am hour, it was obvious that no type 1 child had ever been evaluated for a power chair. My guess is that like so many situations we have found ourselves in, Getty is in uncharted waters and seems to always be on the low end of the tide, just trying to make it up the current. So the dialogue was both of frustration and emotion. I see the smile on her face. I see her world opening up to her and she is doing this all by herself. But because a generic evaluation was created for all kids trailing power chairs, she doesn’t fit and in turn does not get the opportunity she deserves.
I pleaded with the powers that be to in the very least entertain a special circumstance clause to help Getty have at least a chance. I look forward to some kind of update very soon.
9am: I am getting training on Getty’s distance learning tool, the VGo. It is amazing. This will allow Getty to participate in her physical classroom without physically be in attendance. I will be brave and bring her in for the kids to meet her and we will make some appearances here and there, but once RSV season starts she will remain at home. So today I got to get trained and I am so jazzed to get going. Getty was still sleeping, but once she sees her classmates on the other end, wow this is going to enhance her life so much.
10am: Getty has her breathing treatment. It takes a good hour to complete her entire treatment. All seems good. Her food is already made so she is starts the beginning of her daily food intake.
There has already been a lot of emotion of my end. I have already broken down and cried twice trying to get the powers that be to understand that with uncharted waters needs to come some compassion and flexibility. I can only be as stoic as possible and so I break down away from Getty’s sight. She does not need to see her mother sad. I only want her to see my smiling face. Because when I smile, she smiles.
11am: Getty is playing with her Grammy. They are painting a wooden castle. I am in the room and Getty starts to have a hard time breathing. Alarms are going off and I instantly start to suction whatever I can out of her mouth. Cough assist is turned on in the meantime and after a few rounds of suctioning, I go straight to coughing her. Trying to get whatever may be blocking her airway. Her O2 and HR numbers are not drastically dropping, but if I do not continue to be aggressive I could have a big problem on my hands. Suctioning, cough assist. Suctioning, cough assist. Then I wait to listen for her breathing. I can still hear some kind of clanking going on in the back of her throat, so more suctioning and cough assist. I stop to listen again and all is clear. I put her bi-pap mask on and turn it on so she can blow out whatever I have missed or not been able to get in the first place and to ensure her safety.
So what happens next? Well her and Grammy were painting, so you go back to what she was enjoying. By god we paint! She did a beautiful job and her and Grammy had a great time painting it all kinds of colors. Now Rapunzel has her very own castle. 🙂
12pm: Time for bed. We snuggle her up in her blankets and turn on her night light lady bug and she is off to slumber. Her O2 and HR numbers look terrific, almost as though that “issue” never happened. In the meantime I have ordered a delivery pizza and he was finally at the door.
I paid for it, left a tip and my mom and I ate. I always order a vegetarian pizza with the addition of artichoke hearts. They are an additional fee and it was paid for, but for some silly reason they did not make it on the pizza. I called to ask that the cost be removed from the order and when the lady said are you sure there are no artichokes? There was a moment perhaps only a person under incredible, sometimes unmanageable, sometimes crazy stress would be under. I calmly said, no there are no artichokes, but if you would like to dispute this, please keep your two dollars, I have a bit more going on in my life then to be disputing artichokes.
If only I had a life that I actually had the energy to dispute artichokes. Gosh, what a very different world I would be living in.
So today is pretty much a regular day in the Storm household. There is always something we are trying to fight for Getty. Something that she loves and/or thrives with. There is always a sense of urgency to make whatever event we do the best we can to raise money to help families and give what we can to research to help find a cure. There is always a underline exhaustion to why anyone needs to get in the way of any SMA child’s need for independence and happiness. I look in the mirror and I do not see a 36 year old woman anymore. I am aging as we speak, I know, but I feel like I am aging every time I am fighting for my girl.
To end this post on an amazing note I wanted to share a video that Mark put together to show our little rockstar powerchair princess. Enjoy! We sure do. And we hope in the very near future she can have her own. We want to put pink flames on the back of the chair. Because we know that once she gets her own ride, she will be shooting for the moon!
For many people, tattoos are very personal. Immense time and effort goes into just the right message, image, and/or symbolism to add to one’s body. Perhaps in tribute, to honor, a message of hope, a way to celebrate, a way to grieve, a way to remember, a way to show love.
I have always been fascinated with tattoos. The question for me has always been why and what is the story behind a particular tattoo? More times than not, it is a story of triumph, an act of love, a memory to cherish, a way to show respect, a way to express non-verbally and permanently.
When Getty was dx I decided early on that I wanted to show my love for her and selfishly a way to keep her right next to me with a tattoo. The first owl tattoo is strategically on the inside of my arm, so it sits softly again my heart. As she hits a new milestone of birthday’s, I add another owl to my arm. It is my way of documenting her growth as a human being and documenting all of our memories together as a family.
In honor of SMA Awareness month, I wanted to do something different this year. I wanted to show the outside world a virtual wall of tattoos that show symbols of love.
I asked the SMA community to send me a picture of their tattoo(s) in honor of their children. Every single tattoo has a story. Every single tattoo is beautiful in their own way. Mothers, fathers, grandmothers, aunts, uncles, friends, brothers, sisters, etc. have all participated.
You see SMA does not just affect the immediate family. SMA affects everyone involved in all different kinds of ways. Sometimes in order to honor someone, this is the strongest way they know how to show that love.
I want to thank each and everyone who offered their picture(s). It was difficult putting this collage together. Looking at tattoos that are in commemoration of a loved one that has passed due to SMA was very hard to look at. They are all beautiful, and it is a reminder to me to make sure I take every single moment with Getty with such purpose, because no one can determine what life has in store.
Getty is three and a half now and I am currently working on what my fourth owl will be. I told her when I got my first owl that I will continue to receive tattoos of owls even when she is well into her 70’s. That is a lot of owls folks. I will gladly take on the title of “Owl Lady” with pride.
This summer has been a blast and there is still a little bit of August left. Without a doubt, we have been able to get out much more then we ever have. I think it has a lot to do with being more comfortable traveling with Getty, but mostly I think it is because Getty is getting older. She is almost three and a half years old (OMG!) and we know that she is even more curious and excited about the world around her.
We were really hoping to travel farther and longer this summer, but it just didn’t work out. So to still be active, we have tried to do local activities as much as we can.
We really want to thank everyone that help support two events this August that helped raise funds for Getty Owl Foundation.
SACRAMENTO RIVER CATS
It was a beautiful night on August 3rd. Thank you to the over 60 people that bought tickets to support Getty Owl Foundation. The temperature was terrific and let’s be honest, the beer and hotdogs weren’t bad either.
Thank you to the River Cats and their continued support for Getty Owl. They have always been terrific and we look forward to seeing Dinger at our 3rd Annual Getty Owl Run/Walk next February 24th.
SMA CANDLE LIGHTING
The second Saturday of August is SMA awareness month’s candle lighting night. We light candles for all of our SMA Warriors and all of our SMA Angels. It is night that for our community we come together and honor all affected by SMA.
8th ANNUAL GUAC OFF
This past Saturday night the best guacamole chefs came out to compete against each other to win the coveted gold metal avocado. We would like to thank Kelsey for choosing Getty Owl Foundation as the event charity.
We were able to spread SMA awareness and the event also raised funds to support GOF. Mark even got to be on Good Day Sacramento the morning of to plug Getty Owl Foundation. Not too shabby. We had a great time that night.
Let’s see what else? I want to do separate blog posts on several incredible topics that I have been biting at the bit, but waiting for the right time.
-Symbols of love
-Power Chair Training
-You make me smile
You see, lots of fun stuff and milestones that continue to astound us. Stay tuned!
The Doctor’s Inn provides cutting edge interviews with doctors, chiropractors, naturopaths, healers, and others who share their perspectives on health and well being. I appeared on the show where we engaged in a thoughful and in-depth program about the ins and outs of Spinal Muscular Atrophy.
- Where does SMA come from?
- How does it affect people?
- What can be done?
August is SMA Awareness Month, and we are getting the word out with plenty of help from very caring and exciting people.
Suzanne & Kat, thank you for dedicating such a generous part of your show to SMA Awareness and Getty Owl Foundation. Together, we can help improve the lives of those affected by SMA and find a cure.
Special thanks to Rebecca McNeff Matney for making it all happen! Rebecca is grammy to Ember, who has SMA Type 1. See Ember’s Fight Against SMA on Facebook.
Please CLICK HERE to listen to this podcast. Tune in for more!
For more Suzanne & Kat …