From Kate & Mark,
Today is a really big day for so many reasons sweet Getty. We love you so very much. You are our hero, our warrior, our everything. You have grown leaps and bounds we are just so proud of you and we are so thankful that you chose us to be your parents.
We hope you enjoy all the surprises today. We also hope you don’t mind being a bit spoiled today. 🙂
Here is to many, many more!
You Just Never Know and Here We Are
“Getty has what is called Spinal Muscular Atrophy, from what I can tell. Now we will need to do some blood work to make sure she has it. You both will need to also have a blood test just to make sure you are carriers, but unfortunately I am afraid this is the diagnosis,” said our neurologist on that fateful Friday, July 31st, 2010.
Mark and I really didn’t have much to say. Shock had encompassed the doctor’s office. I glanced at Getty as she lied on the examining table. All I could muster up was, “How long do we have?”
“At least a year but most likely not past two,” he said. More shock and disbelief.
No tears were shed in the office and not even on the way home. I asked Mark as we drove home to call my mother so they would be at the house when we arrived. How on earth were we supposed to explain this to them when we could not explain it ourselves?
Sure Getty was kind of “floppy”, but she could still sit up for a bit, in the right position, and she could hold her head up. What I know now was that it was, in certain regards, wishful thinking on our part that maybe the neurologist had this whole thing wrong.
He was right. The blood test came back positive for SMA and we were carriers.
How on earth could such a destructive disease, the #1 genetic killer of young children go virtually undetected to planning parents, new parents, women, OBGYNs … EVERYONE?!
How on earth is this not a standard blood test?
How on earth is there no insane amount of research already going into this disease so their IS already a cure?
How on earth can it even be labeled as an “orphan” disease?
I wanted justice!
My journey with grief began with utter disgust and anger. I am Getty’s mother and I am supposed to protect her from any kind of harm, and look at what I have done. Unknowingly, I had passed along a recessive gene that will, in the neurologist’s opinion, take her away from us in two years, if we are lucky.
FAST FORWARD …
“I want to thank everyone for taking the time to have our meeting her at our home, instead of at your school site,” I said.
Seven educational professionals formed a circle yesterday, Friday March 22nd, 2013, in our little kitchen to discuss Getty’s educational journey. We were here to have what would be Getty’s first Individualized Educational Program (IEP) meeting.
Here is a brief description of an IEP:
“An IEP defines the individualized objectives of a child who has been found with a disability, as defined by federal regulations. The IEP is intended to help children reach educational goals more easily than they otherwise would. In all cases the IEP must be tailored to the individual student’s needs as identified by the IEP evaluation process, and must especially help teachers and related service providers understand the student’s disability and how the disability affects the learning process.”
I started the meeting explaining SMA and how it affects Getty. I went into length about how incredible Getty is. I went into length about her personality, her strengths, her character, her exuberance for life, her everything.
Most of these people had never met Getty and I wanted to create a picture of our daughter so they left visualizing her as a human being and not as a number. I wanted them to leave wanting to stay until after she woke up from her nap, just so they could meet her and start their session early :).
I wanted them to care.
After I was finished talking for a good 45 minutes on all things Getty and her diagnosis, I cried uncontrollably. The entire room was crying. The catalyst for my emotional breakdown was not talking about SMA, it was not talking about my beautiful daughter — I was crying because it had finally hit me that we were “here.”
Getty will be in pre-school. Getty will be 3 on Monday, March 25th. Getty has gotten to a point in her life that she will be able to continue to grow intellectually and be challenged to shoot for the moon. Getty has already beaten the odds and there is no stopping her. Getty is a warrior. Getty is, well … Getty … and she is present and in our lives.
I usually have my “shit” together, but I could not stop crying with this realization. They could not stop crying for that same reason and afterwards learned that they were so overcome by my passion for her that they couldn’t help but feel that immense love.
There are so many things we could have done when the diagnosis was handed to us on that fateful July afternoon. We chose to fight and not allow Getty to be defined by SMA.
I knew in my heart two years simply was not going to be enough time for us to love, nurture, and explore with her. She deserves more time to love, to discover, to learn, to enjoy what life has to offer her and us as a family.
So you just never know … and here we are … and here’s to more. Lots, lots, lots more.
Getty’s Birth Story, Military Style!
Technically a little over three years ago I was pretty much as big as a cow. Getty was “supposed” to grace us with her presence on March 14th, 2010. I remember the doctor telling me, “you know due dates are not always accurate.” Looking back on March 14th, then 15th then, 16th, etc. I started to get the point. Her room was all ready to go, right down to the last detail.
My original plan was to start maternity leave from teaching the week of and then come back after the 6 weeks were up. Mark and I had it “all planned out”. (If you don’t like my “quotations ” I do apologize, but since this is my way to emphasize to myself how incredibly stupid I was to “suppose” anything in life, I will continue to use them :)) Once we got to March 16th I had an appointment with my doctor to see how far along I was. 3 cm dilated. Well yahoo, it is only a matter of time now. I thought maybe I should just stop work now? I mean she is coming any day, minute now, right?
The days continued to pass and that 3 cm seemed to not really care that I was ready to have Getty. Nope it just resisted and was stubborn to hand over the responsibility to 4 cm. By March 19th I had declared that I would just continue to work until I needed to not. My “plan” was not working out and so when I get frustrated I just do what I know best. Push on and move forward. What I really continued to do is literally waddle for the next 4 or so days teaching my lessons. Getting my AP US History kids prepped for their big test in May. I hated leaving them so soon, so to feel better, I stuffed their heads with the remaining information to then let them digest it until test day. It is amazing what you can do when you have no time but have a passion for overwhelming a classroom of eager teenagers. We went through the Civil Rights movement in two days. Martin Luther King Jr., if I had to guess, would be pretty upset with me. I am sure he never intended for a teacher to Clif Note all of his accomplishments so quickly. Disability, LGBT, Women, Labor, and many other minority rights were all lectured on as a swift pace, but I felt they need the essence of each to really understand the civil rights movement. 1970’s, 1980’s, into Clinton’s first term in office. Lots of info and no time to teach it.
The kids had become accustomed to my pregnant moments. While in lecture I would get caught on a word. I would literally blank and could not remember the word. The kids were so sweet and they would say, “what does the word start with?” I would answer, “d”. Then a student would ask me to describe it. “It is like when you feel hopeless.” And almost in unison, they would say, “despair”. Then I would say “Ah yes, despair thank you kiddos.” Then move on with the lecture.
This happened all the time andwith the most general of words. That is what made it so funny to me and to the kids. 🙂
By Tuesday, March 23rd, our doctor gave us the option of coming in to be induced the next morning or remaining at home to let, “nature do its thing.” We opted to get Getty out!
I said a final goodbye to the kids and staff at school as I was ready to become a mommy. The next step in my life. I was coming back of course, but for now I was off to give birth to a little girl already named, Getty Emelia Storm. Or what the kids had grown accustomed to calling her, Super Storm. 🙂
Getty’s movement was in overdrive and I was retaining water like the Michelin Man, if he was full of water, not air. No sleeping position was comfortable, nothing sounded good to eat, I lost sight of my feet and thought I had lost them forever by week 25. I was ready for pregnancy to be over, honestly.
The induction process started on March 24th around 7am to no avail. Nope, Getty did not want to come out at all. All vitals were great for both her and I. I wasn’t dilating any larger than 4 cm. So either I got a bad batch of “inducing medicine” or she simply wasn’t ready.
My phone was making tons of noise all day. Everyone wanted to see Getty. My response was, “nothing yet”. I ate a lot of jello and juice. Nurses and midwife’s went on and off their shirts. Random floor doctors would come in and measure her and they thought for sure she would be around 6+ pounds.
By 12am March 25th my water broke on its own. In my mind I thought, “okay this is good, now it is only a matter of time.” I love how looking back on this experience makes me giggle, because I really had no idea what I was talking about. As I write this I am giggling and shaking my head at the same time. It is also making me think about our family history. Nothing has come easy for a person with our last name Mathany. Nothing has been easy, nothing has been handed to us, nothing seems to go as planned, but we survive. And here I am once again proving our last name to be true.
Contractions began around 3am. They hurt, but on the hurt scale I would say is was about a 4? The midwife asked if I wanted an epidural and I said no. I told myself that when it got to like a hurt #7 then we would just go for it. So I continued to lay down and I actually fell asleep.
Something happened between 3am and 7am. While I was asleep my contractions, pretty much went from a 4 to a 10! In the very least I could have had some warning. 🙂 So by 7am I was not asking the nurse, I was telling her to get the midwife, I was ready for the epidural.
What I did not know was that there was a protocol for getting an epidural. An order had to be written, the epidural guy needed to be found and put on my epidural schedule, he needed to come down with his “stuff”, and then, and only then would he be able to administer the goods.
While in the time I was professing I was a 10! and that I needed the epidural. It was a good hour until I actually got the shot. Again looking back, not to self, ask for it before you need it. 🙂 Noted.
By 9ish on March 25th things were feeling a lot better. I had already forgotten about the pain. What pain? My phone was still going off, wondering where Miss Getty was. I stopped answering the phone in certain situations. Not to add drama or worry anyone, but she simply was not here and I was tired of telling them the usual line of , “not yet :)”.
By 4pm, my midwife thought that I should just push for the sake of pushing. “let’s see what happens” she exclaimed. Pushing was in full force. I gave it the old college try with no success. “well you did a good job, Getty just isn’t ready that is all.” she said as she removed her gloves, “let’s try again in about two hours, you get some sleep.” And so I did until about 5:30pm.
A new midwife came in and introduced herself. She was a retired Marine nurse and she was such a blessing. I felt an instant connection to her in many respects. It was almost like I knew, “this is the lady is going to help me get Getty out, even if she has to yell or command her to come out. ” 🙂
I did not want to have a c-section. No real reason honestly. I think at this point it was more of a pride issue. I had been here for so long, I was in it for the long haul and dang-it, Getty was coming out the way I “planned” it. Of course if there was any harm of any kind to be had at any point in my pregnancy I would have done what was best for Getty. But at this point, all of her vitals were great and so we continued with the natural version.
Pushing started promptly at 1800, is what Midwife Jane called it. Man at this point, I don’t care what time she called it, I was in her military hands and I knew she was ready to help and complete this mission. So I pushed, and pushed, and pushed, etc. Getty was moving in the right direction, thankfully. The pushing continued until about 8pm, sorry, I mean 2000. At that point she said, “if she does not come out in the next 20 minutes we have to take you down and get her out the other way.” Our eyes gazed into each others. She had this look on her face as if to say, ‘dammit, not on my watch, this baby is coming out, Kate are you with me?”
I pushed like I had never pushed before. I was so in tune with the contractions that the nurses nor the midwife had to tell me when to push. I mean at that point, they could have just stood back and waited for Getty to come out.
At 8:16pm on March 25th our sweet Miss Getty Emelia Storm was born. She was gorgeous, she was 8.9 lbs, and she was finally here. So worth the wait.
I thanked the midwife for her encouragement and coaching abilities. Honestly I thought if I didn’t get her out, she was going to take me out back and beat me once I was up to it. 🙂
Giving birth come in all shapes and sizes. This was our story. This is Getty’s story of how she joined our family. This was probably the most peaceful I have ever felt in my life. I was a mommy.
Getty’s 3rd Birthday is coming very soon. With every single day, month, and year she graces us with her beautiful eyes, her wonderful sense of humor, and her ever present grace, we are blessed.
So many milestones have been witnessed and with tons of hope and love, many more milestones still to come.
I love you sweet owl. You are my heart and the air I breathe.
Winter fades away, trees fill, flowers bloom, and the air warms. It is time to emerge from hibernation. In our case, hibernation doesn’t mean a long peaceful dormancy; it means LOCKDOWN! All the work needs to be done and care provided, but Getty & Kate are stuck indoors all winter to avoid getting a sick little girl. If Getty catches a cold, we’re looking at a minimum of 10 days of intensive respiratory treatments around the clock, every 2 to 4 hours without fail. It’s better for us to go stir crazy for a few months than to put Getty at risk.
Then the sun comes out, RSV season tapers off, and we spring forward doing the things we couldn’t do before. This was a perfect weekend for it!
Saturday, we invited Battalion Chief Becky of the West Sacramento Fire Department into our home to visit Getty, look at Getty’s setup and array of medical equipment, discuss Spinal Muscular Atrophy protocols, and devise a basic emergency plan for Getty’s care. It was a great visit! They flagged our address for special emergency dispatch, assured us that first responders would FOLLOW OUR LEAD when administering care, and discussed future meetings along the same lines with ALL the city Battalion Chiefs and the ambulance company supervisor. We will also discuss transferring advance knowledge of SMA to the first responders themselves.
Kate couldn’t attend this meeting because she was taking an opportunity to get out of the house for once. To be more precise, she accidentally gouged the side of her wrist with a big knife and had to get stitches. So, it wasn’t exactly respite time for her.
Sunday, we all got out together! The weather was perfect, and we took a nice drive in the countryside to Winters, California, an old agricultural town with a well preserved Main Street and railroad bridge over Putah Creek, once a rail line from Vacaville. We had just enough time for a great lunch at Preserve Public House and a stroll over the old bridge. Getty was delighted at blowing bubbles on the old bridge, soaking in the sun, and looking at the creek below.
Exploring California has long been one of my favorite things to do. Kate has been nice enough to humor me over the years in this area, especially in one trip where we took a bumpy dirt logging road all the way over the Trinity Alps just because I thought it would be fun. Hopefully, Getty will enjoy the fresh air and seeing new places and things … but we’ll stick to paved highways these days.