If you think about it, our society embraces the upright. You don’t really think about it, you get up in the morning and from that moment most people spend their day, well, upright: walking, sitting, crawling, jumping, etc.
Before having Getty, I hardly gave thought to the fact that some do not have the ability to “be” upright. I never considered that being held at an angle could severely inhibit one’s ability to breathe and/or swallow.
When Getty was first diagnosed with SMA, the only aspect of SMA she was presenting at the time was hypotonia or muscle weakness. When assisted, she could sit upright with no apparent oxygen desaturation. She had no problems swallowing her own secretions or eating.
As the months passed, and well after Getty’s G-tube and Nissen surgery in November 2010, we noticed being upright was becoming difficult for her. With some assistance, she could sit upright, but we were noticing that the time while upright was starting to get considerably less before she became obviously uncomfortable.
We had a few scares of severe desaturation in the month of December. Mark and I discussed Getty’s care together, like we always do, and we decided that we would no longer push her to be upright. We felt that when the time was right we would pursue the upright world for her again, but not right now.
Don’t misunderstand, the laying down world is just as exciting. The books are the same, the singing is the same, and the exercises and massages are the same. Getty just has a different perspective as maybe the upright world has. If you think about it, it really isn’t that different.
However, in my heart, I was dying inside. On some days I had no problem while on others, I felt paralyzed. It didn’t phase me before because Getty was still young enough that I didn’t equate crawling with her milestones yet.
She is almost 11 months old now and other kids her age are starting to walk. So I needed to be able to grieve the fact she would never walk. It is silly, really. I know she won’t be able to walk, yet when I saw kids her age walking, I fell into a self-loathing spiral.
I hate SMA.
Then I experienced a day like today. Let me set the stage. First let me say that Mark will be posting about Getty’s new and unbelievable medical stroller called the Exomotion EASyS. It is simply amazing, so I look forward to that story.
Anyway, so today was the day. My hair-brained idea was to see what would happen if Getty was upright. How would that happen? How would she do? Will Getty enjoy the experience? Are we ready?
After lots of suctioning of saliva with the suction machine, I put Getty into her stroller. It was reclined at 180 degrees flat. The pulse oximeter was secured to her toe to let us know if any oxygen decreased and/or heart rate changed. We attached the bi-pap machine to her little nose in an attempt to keep air flowing into her lungs and to help dry and force out her secretions. We were very diligent and also very methodical about this process.
Once all the numbers were good, we started to incline her upper body by adjusting the stroller. I believe we got about 140 degrees and performed the same ritual of suction and motoring. This process of getting upright took some time and then Getty got to about 100 degrees and we stopped. We stopped and you should have seen her face. She was just beaming with delight. I took this picture after we all celebrated.
So let me explain what is going on the the picture. Getty is wearing her bi-pap mask, her neck monkey is hugging her tight to make sure she is comfortable sitting, and the pink ribbons are part of her arm slings made by Nora’s mommy, so she can have some arm movement while sitting. And that smile and tongue is all GETTY!
Here is a side view of Getty in her awesome stroller looking out the window. The chair beside her is my chair, we spent a good portion of the afternoon reading books, talking about what was going on outside and just chatting like girls do.
I love this picture most because it is so symbolic of Getty’s journey. SMA has come into our home and it has shaken our family foundation. At times it robs us of our dignity and strength; yet moments like this continue to renew our faith, give us hope, and it inspires us to push the boundaries of this disease.
When RSV season is over, hopefully in April, we will be outside that window and experiencing new things with Getty. We simply can’t wait. From Getty’s experience today, she is ready to roll!