When Mark and I received Getty’s diagnosis we knew that life as we knew it would never be the same. We had no idea what that meant at the time. I mean how could we, our wounds were still so raw with the realization that we may have limited time with our beautiful daughter.
As the past three months have been moving along, we are finding that our lives are slowly moving to a new normal. True, life as we knew it will never be the same, but we resolved with the notion that in time things would slowly start to change and that this journey would be windy and complicated but for the most part we could remain kind of doing things as usual. Boy, I could not have been more wrong.
A new normal is created every day. What I thought I could trust and control just changes the next day. I made my usual phone call to Mark today at lunch with just a quick check on Getty and to see how things are going. It gives me a chance to hear little Getty in the background and it helps me get through the rest of the day. Today was a different phone call. Mark let me know that he was taking Getty to Kaiser because she was coughing more frequently with each feeding. The nurses felt that the next step would be to get an NG Tube. My heart was just crushed. I cried immediately and I couldn’t stop crying. I stood there in my room just trying to figure out what our steps were. Does this mean that she is loosing her ability to swallow forever? Is this temporary? I was full of mixed emotions and I just needed to get to her.
The appointment was scheduled for 2pm, so I just needed to compartmentalize for an hour and a half. So that is exactly what I did. Class went on as usual and then I was racing to the car to get to Kaiser. On the way there I was overcome with emotion. The only thing I could verbalize to myself was, “can’t we just get a break?” Is it too much to ask to give Getty a moment of peace? Would it be that much to request that Mark and I could have a moment with our precious Getty and not have to worry about fighting doctors, or overwhelmed by work, or the unrelenting pressure of SMA? At that moment I just wanted a break.
Getty, Mark, and I were reunited at Kaiser for the third time this week. We met the doctor and she was just great at explaining to us the in’s and out’s of taking care of the NG Tube. Taught us how to troubleshoot, how to make sure the tube is in place, and basic care. She put the NG Tube in Getty’s left nostril and slowly moved it farther down into her stomach. Getty was an absolute trooper. There were times in which she got a little uncomfortable and then just as quickly it was replaced with a bright smile. She kept looking at Mark and I with this immense sense of calmness, as if to relieve our own anxiety.
The appointment went on for at least three hours. We got a chance to do one feeding and Getty seemed to do okay. We now know that we have to feed her less but more frequently. We need to encourage the bottle feed until she tires or if she continues to cough. We need to continue to encourage her to use her paci as well. That will help her maintain her mouth muscle strength. A new normal.
We were just about to leave and the receptionist let us know that we had guests in the waiting room. Who knew we were here and who would be waiting for us? I left Mark and Getty in the room with the doctor and I walked out to see who was here. I turned the corner and saw two incredible friends standing there ready for hugs. I needed hugs, I needed to talk about what we just learned, I needed to be heard. T and Takoa you both are just true friends. I don’t know how else to say that. How am I ever going to repay the love that you give to Getty, and my family. I can’t tell you how comforting it was to turn the corner and to see you both standing there. You are our angels.
So our normal is not normal at all. In fact it is the opposite of normal and I think this is just the way it will be. What Mark and I truly have control over is the amount of love and devotion we have for our Little Getty. Rest assure we are making sure she has all that she can handle and want in every second of every day.