My how things change.
At first, we said we wanted a boy. Nope.
Then, we said we will love our girl, but we hope she’s not too frilly. Nope.
We also said, just let her be healthy. Nope.
All the standard prenatal tests were clean. The pregnancy was without flaw. The birth was so wonderful. I cast my eyes upon my precious daughter for the first time and then held her lovingly with Kate as our hearts and eyes swelled with love.
SMA began to manifest at around three months when we noticed Getty wasn’t meeting her movement milestones. We attributed it to slow growth and a larger than average head size.
At age four months, on Friday, July 30, 2010, one year ago today, the floor dropped out from under us.
Every hope we had for Getty disappeared in an instant when the words fell out of the neurologist’s mouth,
“Spinal Muscular Atrophy . . .”
“Type 1 . . .”
“Degenerative . . .”
That’s it. She has a life expectancy of two years. Not only that, but we felt we have to spend the rest of her short life bearing the cruelty of just watching her strength waste away as this disease robs her of function, robs us of our lives as a family, robs us of dreams for Getty of playgrounds, sports, school, dances, dating, and maybe even holding her hand and walking with her as she starts another stage of her own life with someone she loves.
I recall the silence and shock after we listened to those words in the neurologist’s office. Kate had just told Getty moments before that she can’t leave us, only now to be told things would be otherwise. The look on Kate’s face at that moment was almost indescribable . . . panic, sorrow, grief, despair, horror. No words could or needed to be said.
We managed to get home. That weekend, we cried and cried. We hugged each other. We hugged and kissed Getty not knowing how many more hugs and kisses she would ever get. Thankfully, we managed to get out of the house and silently reflect in the park.
As some of the shock wore off, we wondered what we would do. Getty is completely unaware of SMA. She has no idea what she should be able to do. Unlike us, she has no sorrow or sense of loss. She is happy. Kate and I made a simple vow: keep her happy. She deserves nothing less.
Shortly after D-day, I wrote, “Our poor baby girl is going to grow weaker and leave us within 2 years, and there is nothing we can do.” I also wrote, “All we can really do is love each other as much as possible in the time we have left with our baby girl.” If all of that is true, then since she is age 16 months now, well . . . you can do the math.
This takes me back to my original thought in this post: My how things change.
We hear over and over in the SMA community how doctors often tell newly diagnosed SMA families to “take your child home and love him because there is nothing you can do.” Sadly, in the weakest cases of SMA, there may be little or nothing anyone can do for now. However, as we have learned, in Getty’s case and in cases like hers, there is so much we can do to provide Getty the greatest quality of life while keeping her as healthy as possible, living up to our solemn vow to keep her happy.
Getty loves and laughs. She clicks and coos. She smiles and sings. Best of all, she hoots. She is expressive and smart. She is wise and peaceful, scrappy and strong. She inspires without speaking and motivates without moving. She can hardly lift her finger, yet she moves the world.
Her deep and soulful gaze speaks to me. She tells me she is happy. She tells me she has needs. She asks me for help. She asks me to love and provide. She asks me to teach, to sing, and to fight. I know she understands me though my gaze, “Don’t worry, honey, Daddy is here.”
Kate and I have learned and changed so much together in the past year. That change is more profound than people may think, but I don’t expect anyone to truly understand all it entails. I don’t expect anyone to comprehend our newly found focus, priorities, and motivations. Much of it is a change in spirit, so it is difficult to convey in words, though when I talk to another SMA Dad, I feel a deep and peaceful bond, despite the mayhem thrust upon our lives.
We have learned to advocate for Getty’s care and fight for her needs. We have learned to be her voice. We have learned to plod ahead in the face of ruin. We have learned not to yield to a system of rejection and denial. We have learned to convert despair into hope. We have learned to embrace greater depths of love and humanity. We have learned to better serve a greater purpose.
There is so much more to Getty and to SMA than to “take her home and love her because there is nothing anyone can do.” We have learned and we know better.
In the past year, I have gone from “Dad” to “SMA Dad.”
My how things change.
I have had an entire year to think about this day, the anniversary of Getty’s diagnosis.
I remember what we were doing that day before her 4 month check-up at noon. I remember what I was wearing, I remember packing the small diaper bag, I remember the weather outside, I remember everything.
I remember the pediatrician appointment being rather routine. I remember the nice discussion we were having with our doctor about Getty. I can’t stress how routine it was. And in a moment right before we left, the doctor made one more quick check on how Getty was bearing weight on her legs and the entire game changed. She did another test with her reflexes and then another to look into her mouth to see the movement of her tongue, all the while Mark and I just sat back as parents not thinking anything was wrong. Then for some reason I started to look at our doctors facial expression. She started to have this really intense look on her face and then it seemed to turn to concern. In a way I was trying to ignore her because in my mind nothing could be wrong with Getty. We hadn’t noticed anything wrong so how could she find something we were not already privy to.
She finished her exam and sat back down in her chair. She paused and then told us that she was concerned. “I don’t want to tell you what I think it is, because you both will go home and google it. I hope I am totally wrong and you get mad at me later for adding such stress to the situation, but I am going to make an appointment with a neurologist to have Getty seen today.”
As I write this, those emotions just come back in a wave of terrifying proportions. We left the room, Getty snug in her car seat and we made the trip home only to wait for the next appointment. I laid Getty down in our bed and we just snuggled together. I could not restrain myself, I cried and cried and cried. I didn’t know what I was crying about really, just the notion that something wasn’t right was terrifying me. Getty looked like a normal 4 month old child. What on earth could it be? I stopped thinking and concentrated on her sweet little face and I just started talking to her. I started to bargain with her, like she in some way had the power to change the outcome of this situation. I told her that she couldn’t leave me. I begged her not to leave me. Her sweet blue eyes just looked back at me with such comfort. I held her for hours until it was time to go to the next appointment. 4 o’ clock came and we were sitting in another doctor room. The neurologist came in and did similar tests as our pediatrician had done. He sat back in his chair as our pediatrician had done and then he told us what he thought. Before he spoke though I can only imagine what was going on in his head. How do you phrase a sentence like this so a family understands but in the same breath is manageable to digest? He did pause for some time and I remember thinking to myself that he doesn’t think we could handle that maybe Getty won’t be able to walk? “Does he think we are shallow enough to not handle news like that, bring it doc!” I was already getting defensive and I had no idea what he was going to say.
“Getty has Spinal Muscular Atrophy. It is a genetic progressive disease that targets the muscles. I believe she has type I which means it is the most aggressive.” The room was silent. No crying, no screaming, no nothing, we were in complete shock. The only thing that I was able to muster up was, “how long do we have?” His quiet voice responded with, “1-2 years on average.” More staring and more silence continued, all the while Getty was laying on the bed gurgling sweet coos to us.
He offered the same consolation, “I hope I am wrong, and I hope you call me later and yell at me for being so wrong.”
I was never able to make that call because he was right, Getty had SMA and Mark and I had given it to her because we were carriers. We unknowingly gave Getty a terminal disease. We gave Getty a disease that will continue to weaken her body. We gave her a disease that will compromise her swallowing. We gave Getty a disease that will compromise her breathing. We gave Getty a disease that currently has no viable treatment or cure. We did this!
So now what on earth does a family do? How on earth does one digest this kind of news? How on earth do you move on with life?
Well I guess the answer is, you just do and that is what we did. You get through one day, the next might not be so great, but the next day might.
Our lives will never be the same since July 30th, 2010.
I wrote soon after her diagnosis a phrase that I like to reflect on from time to time. “What can I say, life as we know it has changed forever. For better or for worse, we will stand together. I am honored to be mommy to the best little girl in the world. Miss Getty we love you!”
This helps me get through some very difficult days. But that is what we are doing, standing together through good and bad. No day is similar to another, there is no security that tomorrow will be here, so we just live everyday like it is seriously our last. It is although, no longer doom and gloom. In fact I would argue that I have never lived life with such fulfillment as I do now as a mother and as a human being. I would have obviously wanted a different outcome, but now I wonder if that would have been possible without one? I am still searching internally with that answer, perhaps I will never know.
What I know for sure is that the love I have for Getty is a love I never thought I was capable of. She makes my soul whole. She has the ability to comfort with the most gentle coos and touches. She is so thoughtful and such a strong-willed little girl. I am so in awe of her power and zest for life. How can such a little being be so wise and teach her parents such life lessons at such a young age? I thank her every day for choosing me as her mommy. I am so lucky.
I hope for those reading this post take in to account a couple of things. SMA does not care who you are. It doesn’t care if you decorated your nursery with cute bedding and beautiful furniture. It doesn’t care if you had dreams of your child one day following in your footsteps and kicking around the soccer ball. It doesn’t care if you were subconsciously dreaming about future milestones; high school, college, wedding. All it does is take. 1 in 40 are carriers. That is over 10 million people alone in the United Sates. SMA can certainly be anyone’s reality. A simple carrier blood test can give you the knowledge you need to make the best decision possible for your family. It is seriously as simple as a blood test. Most doctors don’t even know what SMA is so you can’t assume they will offer this test to you, you need to ask, even if there is no family history. There usually never is.
Having said that I believe it is a choice to allow SMA to defeat you. I am in constant battle with our SMA monster that lives in our home. He is here and lives among us, but he does NOT define Getty in any way shape or form. Getty is, Getty. She is a robust little lady who loves life. Perhaps it is not the path I would have wanted for Getty, but it is what is, and we fight everyday for her. We believe that there is hope for her life and for other children with SMA. You have to hope. We believe we will see a treatment and/or cure in her lifetime. We believe that SMA will become more mainstream and lose its “orphan disease” title. There is nothing “orphan” about the #1 genetic killer of young children. Whomever designated SMA with that title certainly got their facts wrong and has done a huge disservice to this disease. Orphan, to me, implies insignificant and there is nothing insignificant about SMA.
On the eve of National SMA Awareness Month, I want to thank everyone that has helped spread the word about SMA. Whether you have received a Tell 5! package or you have learned from SMA by reading our blog or other great SMA non-profits and families around the US, I think it would be safe to say that we all thank you.
No family should EVER be given the diagnosis of SMA. No family should be given the dire statistics of 1-2 years of life expectancy. No child should have to have their respiratory compromised due to a degeneration of muscles. We need to keep fighting for awareness and we need to keep fighting for a cure. Getty and her friends deserve nothing less. That is why we fight so hard. I want to see Getty attend high school, I want her to graduate from college, I want her to get married, I want her to have a full life and an extended one full of experiences. Getty deserves that.
Getty said “dada” the other day and Mark and I were over the moon. Will more words follow? We have no idea, but we are so thankful for “dada.”
I wanted to thank everyone who has emailed us for a Tell 5 package. As of today, Wednesday there are over 60 people so far who will be receiving a package. Remember there is still time to get one. Just email us at firstname.lastname@example.org and I will get it in the mail asap.
So let me do a little math: 60 people x 5 people they tell = 300 new people who will know about SMA. Then if we want to take that a step further, those new 300 people just tell 1 individual and now we have 600 total people who know about SMA and then they tell 1 person, do you see how cool this is? I am so encouraged and so thankful to everyone already who has inquired to help. Fantastic!
First and foremost I would like to thank The Sacramento Bee’s, Niesha Lofing for covering our upcoming events. It is so nice to get some press in our local media, so thank you for being so kind and giving us some print.
We have two events happening on the same night, in the same place, and for the same reason to help END SMA. 🙂
Since August is National SMA Awareness Month, we wanted to find ways to educate the community about SMA. What we decided on is going to be so much fun for all who participate.
Getty Owl Foundation will host the 1st Annual “Hoot The Grid” SMA Awareness Walk along J Street during the 2nd Saturday ArtWalk on August 13th. For those that would like to participate in being a walker, you have a job to do. You didn’t think you were getting away that easily did you? 🙂 We ask that you wear our SMA Awareness t-shirt. It is a beautiful light blue shirt, that will hopefully grab the attention of others to the point where they ask you, “hey why are so many people wearing those t-shirts ?”, and then you can respond as a true SMA warrior does, and educate that person and every other one that comes to you. Please don’t think you have to be an expert on SMA either. You will be provided with “What is SMA?” Fact cards that you can pass out as you move along J Street.
So what is this “Hoot the Grid” stuff. Okay here is the fun part. If you are a walker, your job is to educate and also have tons of fun. We have over 20 stores that have agreed to “House and Owl”. You will be given a map before your departure to find all 20 owls as you walk along J Street. Kind of like an Owl Scavenger Hunt. Once you find owl, you need to take a picture of you and the owl and then move on to the next store.
Once you get to your final destination at AJF Salon You will show all of your pictures to us and if you have all 20 owls, you will be in the running for a gift certificate basket full of gift cards from all the stores that sponsored the” Hoot the Grid” event. I can tell you now that we have a $50 gift certificate to Tapa’s, a few from Starbuck’s, one from Old Spaghetti Factory, and Lady Bug Lady Bug. And as the gift cards come in I will add to this list. This gift will be a doozie!
So having said all of that. Anyone can be a walker, it is open to the public, kids are welcome, you just need to email us (email@example.com) so we can get your t-shirt size. T-shirts are $5 a piece.
So the next part of the night gets even better. AJF Salon has opened their doors to host our SMA Art Auction. The Salon will be open to the public from 7-9pm the same night, August 13th. The theme of the night is “A Celebration of Life”. All the artwork shown that night are from SMA families around the United States. Mark and I have been blessed with meeting some incredible families that fight as hard as we do to care for our children, raise awareness, and help find a cure for SMA and I wanted to capture that. Our children, whether they are angels or warriors of SMA all are amazing and they shine in so many different ways. They are funny, they are captivating, they are the absolute joys of our lives. And perhaps in a small way, coming to the SMA Art Auction will give you glimpse of the love we have for them and how incredible they are.
Almost all of the art will be for sale. We will have a suggested price for each piece. You may purchase the pieces that night and take them home after the gallery is closed at 9pm.
Along with artwork from SMA families, there will also be awareness pieces at the gallery. I am not an artist by any stretch of the imagination, but I did try to illustrate extremely important statistics about SMA that I think all people need to know.
The art auction will be open from 7-9pm. There will be wine and appetizers as well as a silent auction. At 8pm that night, Getty Owl Foundation will accept a proclamation from the City Of Sacramento, declaring August as SMA Awareness Month. We couldn’t be more excited and humbled as a foundation to be given this opportunity. We would like to thank Councilmember Kevin McCarty for making this proclamation possible.
So if you are in the area and would like to participate as a walker, please email us. If you would like to come to the SMA Art Auction, we would love to see you from 7-9pm. If you would like to buy a piece of art, fantastic! All the proceeds will be going to our commitment to raising money for the Gene Therapy Program to help find a cure. Remember we are a 501(c)(3), so your purchases are tax-deductible.
I woke up this morning like most mornings with a desire to end SMA. For most of my day I am functioning as regular Kate, Getty’s mommy, and I think I also have a alter-ego that is constantly plotting how to end SMA. I am still working on the alter-ego name, but for now the plotting continues.
The Getty Owl Foundation has a few amazing events coming up that I will talk about next week. They are more local and I know will have a big impact on our Sacramento region. But today’s plotting took on a worldwide level. I found myself doing the cartoon villain wringing of the hands. 🙂
I am calling it “Tell 5!” Which means I challenge and encourage anyone to tell 5 people about SMA. With August being National SMA Awareness Month, I thought it was only fitting to ask everyone now and see who is up for the challenge.
Okay so how can you help? Easy-peezy!
I will send this package out to ANYONE that is interested. It is FREE!
Enclosed: (5) What is SMA postcards and (5)Getty Owl Foundation Bracelets
If you are interested in receiving one of our Tell 5! packages, just email us at firstname.lastname@example.org. It is that simple!I don’t care where you live, if you are up for the challenge I will send it. 🙂
Now I want to take Tell 5! a step further. I want to do a GIVEAWAY!!!!!!!!
For all who receive a Tell 5! package, take a picture of yourself and the person you are giving the SMA Awareness stuff to, with a little write up of the experience and you can be entered into a drawing for:
-$50 Visa Gift Card
-CD of Sweet Water Child, Lullabies for Getty
So you really have 5 changes to be entered! Email all pictures and write-ups to email@example.com. We thank you in advance for your commitment and support to end SMA.
Deadline for Tell 5! Package inquires is August 17th.
Deadline for picture and write up submission is August 31st.
Sacramento’s weather has sure been funny this year. Days that should be toasty just aren’t and then we had so much rain that you would think we were in Oregon, which by the way is not a dig at Oregon. Mark and I love Oregon for many reason, one of which is we were married there. 🙂
But the weather has been a bit unstable. Now I am trying to figure why I was talking about weather in the first place? Ah yes, walks.
Getty is slowly getting back to her baseline numbers since being sick. Her usual oxygen is around 97-99. She will hit 100, but it won’t stay long. Her usual HR wake is around 120-130’s. Lately Getty’s HR has been a bit higher and so we are carefully watching that. Nothing alarming, just a bit higher since her illness. She is doing great while we are sprinting her off bi-pap. Two to three hours off bi-pap is working for her. Our hope and goal is to get Getty back to being off bi-pap during the day and only using bi-pap for sleeping. But we are going by her rules and she will let us know when she is ready.We are so proud of her recovery.
So lately the weather has been nicer. We have been waiting until later in the evening to take our walks. It is such a joy to be able to resume walks as a family. Since Getty is still a bit unstable, we put her on bi-pap for our walks.
Her medical stroller is simply awesome. It holds all of her necessary items for our journey. In no particular order: Cough Assist, Pulse Oximeter, Bi-pap, Suction machine, and Portable battery. All of which plus the stroller is very heavy to lift up and down a few steps from our front door, so we will be getting a ramp to make that process a little less wearing on our backs. 🙂
It has been a lot of fun watching Getty while we walk. She is very serious and she seems to observe here surroundings very carefully. If we stop the stroller she will do one of two things: Getty will fuss, letting us know to keep moving, or she will give you a non-verbal look of “why the heck did you just stop?” So we have to be very careful when we decide to stop. We have learned in the past that if we stop for a long period of time, she will cry, she will pool secretions, and then she will desat, so needless to say it is a bit more complicated and we choose not to go down that route. 🙂
She seemed to observe all the trees, the cars driving by, animals that walked near her path and then there were times in which she just seemed to be in the moment. So very content being outside and content with life it seemed. How can an almost 16 month old be so soulful, but she is and we are always so in awe of her power.
Our usual loop is around the neighborhood and through the park. It gives Cooper a change to run around with Mark and the park is usually full of people, which is also fun for Getty. Our walks usually last a good hour.
We try to go on walks every night depending on the weather. We have been very lucky that this entire week has been nice enough to go out and not too hot. Last night we walked by some neighbors that we haven’t seen since Getty’s diagnosis. It was nice to see them and to chat. We talked briefly about how Getty was doing and they came down to meet her. Again she was very serious but did give a slight smirk when they showered her sweet compliments. As we were leaving she starting in with all kinds of coos. She was so shy up until that point. It was cute to hear her chatty as we walked away. I am not sure if she wanted to still talk to them or if she was telling us all the things she would have said if not for the shyness or what. But the timing was very cute.
Here are some pictures of one of our walks.