“Road Trip”! Getty and I got a chance to get out of town this weekend. Getty got to see and spend time with her beloved Auntie Krista & Auntie Chris and Miss Pixie P. The weather in Oakland was terrific. I was looking forward to bringing Getty for some time. The bay has a great feel to it. The weather, people, and places are so inviting.
Last night we slept in a big comfy bed and Getty’s eyes got huge as she looked at the big fluffy bed. We sat up and I told her a couple of stories about a little frog and his friends in the pond. She giggled and as I told the story she had her hand on my forearm. As the story went on I noticed her moving her hand back and forth caressing my arm. It was so precious.
We enjoyed a long walk around Lake Merritt. There were all kinds of birds and people walking around. She enjoyed watching each and every thing pass her by.
Krista and Chris thank you for your hospitality. Thank you for your love and support. Getty loves all three of you so much.
Our trip home was short and quick. We wanted to get back to Daddy as soon as we could. I could tell that at times she was looking for Mark, especially last night. The reunion was tender and sweet. Kisses and hugs were plentiful.
I continue to be amazed by the outpouring of love and support from family, friends, and total strangers. SMA families and others who know nothing of us beyond some knowledge of our current situation have generously offered and given so much to ease the hardships in many different ways. It is difficult to find the proper words to express our gratitude, but thank you.
Something else that really helps take the edge off is our evening walk in the park. Cooper gets in a good run. Getty loves looking up into the trees (probably looking for owls). Kate and I get a chance to unwind and enjoy some family time together. Good times.
Beginning a new school year has always been a labor of love. Starting fresh with new ideas, meeting new students, seeing staff after the summer break is always so much fun. After taking the 1st day off I was back in the fray on Tuesday. It was comforting to be back “home”, but it was truly different. It seems as though I am in a parallel universe of some kind. My emotions, though in check, were just incredibly somber. I was missing Getty so much. I was missing her coos, her smiles, her …….everything.
I didn’t want to check on her, because I knew she was in the most loving hands possible, but I still just wanted to hear a giggle of some kind. Was she wondering where in the heck her mommy was? Or did she know and she would just wait patiently at home for me? All of these thoughts were going on simultaneously in my head while I was talking about classroom rules, my expectations, and an overall scope of each class I would be teaching. My focus was literally on two things at the same time. As I spoke I looked at each of my students at some point thinking to myself, I wonder what Getty would look like if she were a teenager right now? Would she be sitting in complete attention listening to me? Would she be murmuring to her friends? Would she be interested in history like her mom and dad? Again these thoughts were going on exactly while I was meeting and greeting with my new batch of Freshmen.
Teaching is very therapeutic. I teach at a school where we seriously care about our kids. That in itself helps me stay focused; because I know we are all doing the best we can to help them in any way possible. I wasn’t sure what to tell the kids if anything about Getty’s diagnosis. Part of me thought, why put that kind of burden on the kids. Do they really need to know? I grappled with that decision for a while and today I just decided whatever came out of my mouth at the time would be it. So all that came out was that it would be possible that I might miss a few days here and there because the love of my life, my daughter Getty was diagnosed with a genetic disease and she might get sick once in a while. And if she does I want to be right there for her. The kids didn’t ask any questions, it definitely killed the “mood”, but they genuinely seemed either shocked or maybe still stuck on the vocabulary and think my daughter has super powers since it has something to do with genetics. 🙂
Tomorrow will be day three of being back to work. I think I have held up okay. When 2:40pm comes around, I am out like a bolt of lightning. If it didn’t look so strange, I would probably sprint to my car. Today, I found myself run-walking to the parking lot in the hope that I might skim off maybe a couple of minutes off of my drive home. This little girl has me wrapped around her finger.
On Tuesday we received an update on the results of the pulse oximeter test. Our pulmonologist said that her oxygen only dipped one time and briefly, in the two nights they monitored her. She felt that Getty would not need oxygen at this time. Listen, I am a realist, I understand that her condition will change in time, but at that moment I felt relief and I felt like I had the right to breathe a bit. My little girl is a fighter.
On that same day we got a late appointment to see the speech therapist at Kaiser. The doctor was checking Getty’s strength when sucking and swallowing. Her opinion was that the combination of thickness of formula paired with the medium nipple was suiting Getty fine and to just keep things the way they are for now. She wants Getty to take a barium swallow test asap. If I heard her correctly it will x-ray Getty in such a way that will give doctors and accurate idea of how she swallows. I had no idea how complicated the throat was. The epiglottis works as a valve to allow you to eat or breathe. For SMA children, the epiglottis might not be strong enough. When food gets into the lungs it can cause pneumonia. So this test is going to help indicate whether it is working efficiently.
September 7th is quickly arriving. We get to meet the entire squad of Team Getty that day. So far our experience with the doctors at Kaiser has been terrific. They have been open and honest with us. Perhaps they can tell that we both need to know everything. I will say this, since the diagnosis all the SMA families we have met have been so helpful with information. Along with research we have done on our own, it seems as though before we go into each appointment we feel prepared, which is very empowering. We look forward to the “team” appointment. It will be nice to place each voice with a face now.
Today our little Getty Emelia is 5 months old. She is a fighter, she is spunky, and she is the sweetest thing in the world. We are just so fortunate to have her in our lives.
Her middle name came from her great-grandmother Emelia. Although I never met her, I heard stories of her inner strength and determination to do the right thing for her grandkids. Getty comes from a long line of strong women. My grandmother Mel was creative, had a strong sense of self, and exuded confidence during an era when women were not supposed to be. Getty’s Grammy, Nola, has set the bar high for grace and perseverance. I believe Getty has obtained all of these attributes from some incredible women. That is why she fights, that is why she smiles and sings, and that is why she beams from ear to ear when we sees a familiar face. I am honored to be her mommy.
The picture I am attaching was taken today in celebration of her 5 month birthday. I told her to smile and she stuck her tongue out at me instead. The apple doesn’t fall to far from the tree. 🙂
Just got back from a long family walk. As I write our little owl is talking up a storm laying right beside me. Gurgles, bubbles, and squeals are all permeating from her little body, oh wait and two sneezes.
Roughly a month ago our lives seemed so carefree and moving forward. Now our lives in the four weeks we have been given Getty’s diagnosis seems to be different. That is really the only word I can thing of….just different.
Our perspective on life and living it has changed dramatically. What seemed to be once confusing is now quite clear. What once was cumbersome has become fascinating.
I go back to work tomorrow and I can’t help think that this experience will change me as a teacher forever. I believe my absolute love for my kids and the subjects that I teach will just become richer and more passionate than ever. If I am to be away from my little Getty, rest assured that whatever I am teaching, whatever the activity will be addressed in-depth and with purpose. Getty would not expect less.
In the past, I did a terrible job of turning work off when I got home. Both Mark and I would blur the lines between our work and our marriage and it became acceptable to put our lives off while work beckoned.
Now we both know exactly where are priorities are. I know on the way home I will lose no sleep over a lesson or an activity at school. It will be left in my classroom. Getty deserves her mommy to be with her presently and I will be more than happy to oblige.
Tomorrow will be difficult, but I know what is waiting for me when I get home. I get to hang out with the coolest little girl in the world. I get to be home with my loving husband and our little Cooper. When I get home we get to be a family. It is all so clear now.
“What is she doing back there?” I thought to myself as I drove around town with Getty in the backseat while listening to music. Everytime I turned down the music the chatter seemed to subside. And then it hit me, my girl is singing.
So I turned up the volume to hear her squeal in delight. If I had to guess what her style of music is, it would have to be upbeat tunes of all kinds. I do remember one song in particular she enjoyed and I also think if we had to pick, Mark and I would say “Got to get you into my Life”, by the Beatles would have to be Getty’s song. A love song pretty fitting for how we feel about our little owl. She has changed us forever and we are just so in awe of her. Everyday and everyway.