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Best Bargainer in the West

From Kate:

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.

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Viral Ice Bucket Challenge Helps ALS And Break the Ice for SMA!

From Kate:

“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.

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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.

 

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Art!

From Kate:

Getty has always been very accommodating and excited about pretty much everything we offer her by way of movies, books, and all things entertaining. It really is quite difficult to find something she doesn’t like. Insert Pixar. So thankful for their subtle adult humor. I think it is safe to say that I could watch them all over and over again and find little new nuggets of funny. Getty is the same way. She will giggle at things that I giggle at and then she will also giggle at spots in movies that I don’t even realize she understands. Insert brain explosion.

So the latest love is Monsters University. Love it. She loves the characters. Let’s face it, I love it as well. Maybe too much. :)
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If push came to shove, Getty likes Art best. I mean how could you not? So we had to get him. :)

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photo 1-8

 

Getty needed to snuggle him.

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And rub his fur. :)

Click here! 

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Light A Candle Tonight

Tonight is a very special night for the SMA community. Tonight we light a candle to honor all SMA angels and warriors. We honor their beauty, their strength, their existence, their mark on this earth.

Join us tonight and light a candle at 8pm from wherever you are. Give some love, a prayer, an offer of peace.

Thank you in advance. If you are on twitter or Facebook, take a picture and tag it with #SMAawareness.

Thank you all for your support and love.

 

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Well Done Indeed!

From Kate:

This is what happened with a little help from our friends (anyone and everyone we know and don’t know. You are all considered SMA warriors now.). *Squeal*

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Since this picture requests have exceeded to over 50. Let me do a little math………yep that is 300+ people who will be educated about SMA. That is awesome. You are all awesome. Please continue to pass the word on. I have tons to give and many envelopes to be ready to stuff and mail. Keep spreading the word, keep making a difference, keep being awesome!

For those that would like a packet, just email us at hoot@gettyowl.org and give us your address. We will send you this:

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6 fact cards and 6 bracelets. Let’s keep making an impact all over the United States and (so awesome) one in the UK!

SMA knows no boundaries. SMA does not discriminate based on race, ethnicity, or gender. It simply does not care who you are. 1 in 40 are carriers of SMA. That alone is over 10 million people in the United States.

Thank you to everyone who has inquired about the packets.

We have more, “hit us up.” :)

 

 

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