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!