Thursday was no different from most. I got up early to get some things done for the run. Getty awoke from her slumber a couple of hours later, only to yell at me all the way down the hallway that the princess has awoken. I wait patiently for my 3rd cup of coffee to be done, so I can scoot to her room.
I get there to see some big blue eyes looking back and a morning squeal. Mama loves those squeals.
Our daily routine now has included Tinkerbell. Any Tinkerbell movie will do, but she has grown profoundly accustomed to these movies than others. Before she wouldn’t care what was put in front of her. Now she knows exactly what she is watching and when to giggle and when to sigh, etc. My little girl is growing up.
Since birth we have slept together. She has always been on my left. It is like we are an old married couple that have our routines even in the bed we sleep in. I know exactly when she needs to be repositioned. She knows when I am faking sleep, because she chats at me. I know when she is falling asleep because she makes the most subtle of sighs which tells me the time has come.
In the morning before we get the day started we do her first of three breathing treatments. They are spread throughout the day. Each treatment lasts about an hour. It consists of suctioning, a cough assist machine, a nebulizer if she needs it, a chest percussion machine that shakes everything up in her lungs, so hopefully we can get her airway and lungs nice and clear for the morning, etc. There are sets of things, brush teeth, etc, etc.
Anyway by the end she is dry, clear, clothed, and ready for the day.
I do my best to keep as much variety of play activities in the house. Today I thought it would be fun to draw. I had set up the coloring easel, her PVC pipe arm sling contraption was in place and all I needed to do was scoot her in and “we” could draw. put her arms in her slings. Asked her what color she wanted to draw with and then I picked one for myself.
What transpired was heartbreaking, scary, and incredibly magical.
Getty started to cry. I mean like cry to the point of desating her O2 into the low 90’s. And her heart rate went up into the 150’s. For perhaps non-SMA families this may not mean much, but for us and for me at that moment I was calmly freaking out. Mark was not here. I was on my own to “fix” this. So you go into triage mode. Suction to get rid of the secretions so she does not choke or aspirate on the saliva. I had her cough assist ready just in case I needed to simulate coughs to really get down onto her lungs to pull up anything that may be down there. I talked calmly to her to see if I could get her focused on my calm voice and reinsurance that everything was okay.. Was she hurting Did I do something when I transferred her to her portable chair? Did she have an ear ache. checked her ears. Did she have a temperature? I checked, no, wasn’t that.
I finally figured it out after I left the marker in her arm sling and moved out of her view. She just wanted to draw by herself. The tears dried, the coos came back, and her sweet little hand swung like she was flying like a bird.
I just sat there and cried for awhile. My baby was fine, so the adrenaline of the feeling of emergency was slowly leaving my body but filling it with extreme exhaustion. But I was mostly crying because she is a little lady and she does deserve her special space to create on her own. Granted it may not be the traditional sense of the word, but it is her’s and at the moment she needed mama to step back. I was so proud of her and I was also sad that she was getting older and that she didn’t need me to hover.
Her final work was an absolute masterpiece. I could tell that after she was done and I peek around to see her face, she was full of confidence and ready to show it off. 🙂 I am so proud of her.
Here is Getty’s masterpiece.
After I left her view I videoed Getty creating. There is a point in the first video that she stops for a time. I originally thought she was finished drawing but at closer look, I realized that she was keeping her marker on the page longer to make color circles. So smart.
My girl is growing up and now I need to continue to learn more aspects of her as a whole so I can help her grow in as many ways as she wants. I am a lucky mama.