Well yesterday (Thursday) was one for the milestone/memory book. Getty got to trial the Head Pod. I will do my best to describe it. Basically it is several bands that attach around Getty’s head so she can have complete control of her neck and head. Before I go any further, I need to explain that Getty has never felt this sensation. Since she is a type 1, the ability to hold her head up was never an option. When she was a tiny baby she could, but it was for tiny stints. So this is a big deal. Can you imagine never having the ability to hold your head up? Can you imagine what it would feel like to be given that ability? Well yesterday she got it. This is where I would add the word awesome. This was an awesome day. To her this was an awesome experience.
So as you can see the support to hold her head is around her forehead and what you can’t see is the support under her head. It took her a long time to realize that she was in the driver’s seat. To know she has been given this gift of independence of her neck and head was probably mind blowing but also a kind of apprehension. Slight movements here and there and then something extraordinary happened. Getty started to move her head from left to right and up and down. It was beautiful.
Our hope is with more practice, Getty will be able to gain more movement in her neck and head.
So I got a bit of footage to watch. She was being sassy and would stop her movement every time my phone came out, but I was able to get some footage.
So here is Getty in her debut performance. Click here!
A million cheers for Getty!!!!!!
Getty, once again hit another incredible milestone……….she lost two teeth. Two of them on the same day, I think.
We woke up as our usual routine would dictate. Getting ready for school demands a diaper change, new clothes, and an hour long breathing treatment. As I was brushing her teeth I noticed one of her lower middle teeth was gone. Like completely gone, vanished, no where. My first instincts was, “where is the tooth?” Since Getty cannot swallow, it is easy for a tooth to be aspirated. I lightly dug my finger into her little mouth in an effort to find the missing treasure. Nothing.
I had already started her breathing treatment so my thought was if it was in there it could have already come out and didn’t notice it. But nopety, nope. This tooth was gone. I started to get kind of frantic. She hadn’t simulated any choking at all that day or night, so where the heck was it?
I decided since the tooth next to the missing one as also loose, it needed to come out. Two missing teeth would send me reeling. So I began to move it around. Gross! The feeling of pulling a tooth out is so gross. But sure enough with a little twist, it was out. A sweet little tooth. Getty’s little tooth. I coveted the little thing in my hand and I just stared at it. Another milestone, chills ran up an down my back. About that moment Angie found Getty’s first tooth. It was on the ground. It must have come flying out last night during her breathing treatment and no one noticed.
So now we have two beautiful little teeth. The gap in Getty’s mouth is so cute too. It just feels like she went from being a little lady to a bigger little lady, instantly. Where does the time go. I remember like it was just yesterday when those little pearly whites were coming in.
So here is our proud little lady showing off her little teeth.
The tooth fairy was busy that night as you can tell. She was all over the place finding the perfect gift for Getty’s efforts. She found two shirts and a Lego set Getty has been wanting.
Congratulations little owl!
I want to thank our friend Freya for offering to hold a great fundraiser for Getty Owl Foundation.
Here are all the details:
WHEN: Starting NOW and until the end September
WHERE: Online http://www.chloeandisabel.com/boutique/freya/700412
HOW DOES THIS HELP GOF: 25% from every purchase of her Chloe + Isabel jewelry line will be donated to Getty Owl Foundation.
WHAT ELSE: They will also be giving away raffle tickets to those who place orders of $100 or more. Winners will be drawn on October 1.
TELL ME MORE ABOUT CHLOE + ISABEL: Chloe+Isabel is a jewelry line that carries both trendy and timeless pieces. All the jewelry is designed in NYC, hypoallergenic, lead-safe, nickel-free and backed by an amazing lifetime guarantee.
We would like to thank Freya and all who order. Thanks a bunch. The jewelry is so pretty. Mama owl already bought some stuff.
Here are the raffle prizes. Hoot! Hoot! Check out the details above to see how you can be in the raffle.
I remember when Getty was first diagnosed and our family was trying to make sense of all of it, I got some advice from a fellow SMA mom. She was and is a veteran mom. One who has been in the trenches for some time and was able to offer some advice as well as some insight in to what this disorder will bring not necessarily to Getty, but to me as her mother.
“Grief is a bitch. You will find yourself in and out of different types of grief. Some you will stay in for some time, while others will come and go and you may not even have time to name it. But it is there in all of its glory just hanging out when you are least expecting it. You may use it to your advantage some times. You may grow as a person, knowing it is there. It has the capacity to build friendships and ruin others. It has the capacity to ruin you or strengthen you.” Mind you this was about two weeks after Getty was diagnosed. The topic was a bit heavy at the time. I know she was trying to help but now that we look back on “the talk”, we laugh because for a newly diagnosed mom, I was no where near grief. I was in a fog and I could not function, even in a state of grief.
As Getty grew older her advice became apparent. I can’t speak for the SMA community, but what I can say is that I feel as though I am in what people call a state of anticipatory grief. We live in a purgatory, if you will, of grief that is really weird to explain. Getty is here and she is doing so well and we are loving our life with her and all of her awesome milestones AND Spinal Muscular Atrophy is still working its deadly magic in a form of degeneration. We don’t live in the negative, you simply can’t you will drown. But certain days seem to be more heavy than others. Certain kinds of grief step in as a place holder and whether I like it or not, it is present.
Anger is easy. Anger can hurt. Anger can hurt others. Anger for me at least is a result of not being able to take the SMA away from Getty. I can do x, y, and z, but at this point and time, SMA is still here. The monster lives. So who gets the anger? EVERYBODY, including me. I pass it around like it was candy. No one is immune to my anger when it is present. What does it look like? A short fuse, a sense of adrenaline running through my veins that can’t seem to be elevated with a good run. It is a pulsating feeling of failure that comes and goes. Sometimes I don’t even know it is coming until I have said something I should not have to another person. I try and take a step back and gain some perspective, then move forward. Anger lingers, anger isolates, anger is destructive.
Isolation is easy. Spending time within four walls of the house pretty much all day is safe and easy to be isolated. There are all kinds of ways to stay present and identified by others, but I know there are certain days that isolation is my “happy place” at times that I don’t care to share other types of grief. Isolation allows for great memory making times with Getty. I don’t have to stay connected with other people, I don’t have to feel the need or tug to get out and see other people, I don’t have to do anything. However once I am out and about I do realize that it actually is nice to see the sun (we have a huge drought happening in California so the sun is the only thing anyone sees). Isolationism is a safe place and is probably one of the “stages” that I often find comfort in and is hard to push myself out of. But once I do I always say, “I need to get out more.”
Acceptance and depression are two that I will choose not to talk about. They are both ever evolving and even though this is a blog and even though it is public, there are certain aspects of my life that I would rather keep to myself. What I will as is this……… depression is a bitch. In regards to acceptance, the only acceptance I have is that Getty was diagnosed with SMA at the age of 4 months. Other than that, that is all I will accept. Anything is possible and Getty will and is thriving, living life to the fullest and is given all there is to be in the world if she wants it, on my watch.
Which leads to a stage of grief I think I would like to name myself, The Best Bargainer in the West! I am the Queen of bargaining, the champ of bargaining. If you looked up bargaining in the dictionary, you would see my face, not the definition, because I am the definition. I am aware of this, I feel it coming on, I take full responsibility for my actions.
Let me explain. I bargain with SMA all the time. I bargain with the monster that lives in my home. This is our usual conversation.
“She is starting pre-school you can’t take her.”
“Getty got new clothes for school, you can’t take her.”
“We just got a computer for her to virtually be in her classroom so she can grow leaps and bounds both socially and academically, you can’t take her.”
“I just cleaned her clothes and everything is put away, you can’t take her.”
” Her room is nicely decorated and she loves it, you can’t take her.”
“Getty is tolerating and doing so awesome in her power chair, you can’t take her.”
” We aggressively have a successful respiratory routine, one that helps expand her lungs and helps to keep her healthy, you can’t take her.”
“Her birthday is coming soon, you can’t take her.”
You can fill in anything and end it with “you can’t take her”, I have done it and said it. Call it what you will but so far I am the champ in this rodeo in my need to bargain. While daunting and perhaps unhealthy, this is where I am right now. I bargain and I plead. I even verbally say on many occasions, “Take that SMA.”
Why do I do this? Not exactly sure. I need more time to psychoanalyze this, but I think some of it is my competitive nature. Most of it is to continue my consistent fight for Getty. Most of it is purely out of love. I am her mom, I am her protector, and I will go to the ends of the earth to make sure things get done. She has everything she needs to be offered all that life has to offer.
I know I don’t often write about topics as heavy as this, but this morning I needed to get it out and this is what I came up with. Maybe this will help another SMA mom or really anyone in grief. Maybe there are some similarities that one might be able to relate to. But as always, this is one mom’s perspective. My perspective.
“What is SMA stand for and what is it?” This is the #1 question I am always asked whether Getty is with me or not. Often times I stand petrified not knowing exactly what I should say. Will I overwhelm them with too much information? Will I not give them enough? It has been a difficult challenge to find a good middle ground. But there is one aspect of SMA that I have found to be the best ice breaker in regards to having a relatable conversation with anyone on the street. “Have you heard of ALS? Well it is like the child version of ALS.” Once the letters ALS come streaming out of my mouth I find that most people create a relatable platform for us both to stand on.
We then go into some statistics and I offer all things Getty related and then it ends up being a pleasurable conversation. One in which I hope that person took away some new information for them to then pass along to another person.
I want to thank Leo’s Pride for putting together a great chart to help anyone interested to see how very similar SMA is to ALS.
Take a minute and you will see the commonalities of each diagnosis. So when I tell people SMA is the child version of ALS, I am really not that off. They both cause weakness in wasting away of voluntary muscles, including limbs, trunk, and muscles for swallowing, speech and breathing.
Both are devastating diagnosis. Both need a breakthrough therapy and/or cure. The clock is ticking.
Even though each unto themselves are different diagnosis, they each have the potential to help each other in regards to research. What helps ALS, has the potential to help SMA and vice versa.
The Ice Bucket Challenges have gone viral. I can’t check Facebook without someone taking a challenge to throw ice cold water over their head in honor of ALS. My hope is that with this challenge, with this new spotlight of ALS will also come a conversation about neuromuscular disorders. There are people behind these diagnosis and there are families fighting for their lives every day.
Educate yourselves on both ALS and SMA. Donate. Find a call to action to help in any way possible. A breakthrough is near, I do believe that and with this hope will come an answer for all of our loved ones.
Let’s keep talking. I know it is trendy to throw ice cold water onto your body, but let’s keep this conversation and sense of purpose going even after this viral participation has subsided. Let’s keep ALS and SMA on your tongue, then when you do talk about how you took the challenge, you can also infuse so many other neuromuscular disorders a healthy dose of recognition. I am partial to SMA myself.
Now go fill up some ice cold buckets and get to it.