The calls for fairness abound since Ella's surgery.
She is realizing and expressing her frustration associated with the confining nature of not only her hip surgery, but with SMA in general. Much too much for a five-and-a half year old to have to endure. Cries of "It's not fair" have resonated throughout the house. And she's right...it isn't fair.
Before the surgery, Ella had never really claimed that life was unfair. She gracefully accepted her limitations and often astounded us at her resilience, adaptive nature, and positive outlook on life. When things seemingly were out of her reach she suggested a way to accomplish her goal in a modified way. She has taught us that if you simply step back, take a moment to see the situation for what it is, take what you already have, and modify it to allow her access--then she can participate. One of our goals in this healing process is for her to fully return to that inspired and wise child.
Ava had a friend over this past week. All three kids like to play together when this friend is over. The four kids were sitting in the living room. Ava, Henry and the friend were sitting on the couch and Ella was confined to her adaptive medical chair. They were deciding what to do. Ella quickly realized that the other three would soon be moving about...from room to room or from inside to outside. The protests began.
"It's not fair" Ella claimed, "they get to move around and I won't be able to play; no one will push me and even if they did, that's no fun."
The other kids, who usually are able to figure out a way for Ella to play, were dumbfounded. Nonetheless they wanted to play by moving around, not sitting idle. The dilemma grew into arguing and fighting. Eventually Henry left. Ava and her friend stuck around for a while, maybe 5 minutes, until they decided to go to the friend's house instead. Ella, still in the same spot from when the friend arrived, was silent. She was abandoned and there was nothing she could do. She couldn't move herself, she couldn't advocate for herself, she couldn't participate. She sat in silent contemplation, most likely thinking about how SMA has limited her.
I sat and watched this happen. My heart broke for Ella. It broke for all of the kids because I knew how much they loved playing together (even though they fight at times!). I felt the frustration, the anger, and the destitution as a result of SMA's intrusion on their collective childhoods. I breathed deeply to myself, trying to thwart the emotions that seep in each and every day...the emotions that want me to cry out, "SMA sucks. SMA is a terrible disease that no one should have to endure. SMA has robbed my family of so much." I was faced with a choice. I could allow the negative emotions that infiltrate our household once again take hold of me or I could use what God has given me and find a way to make things better.
Ella sat in silence. The room was quiet. I looked around, hoping that something would come to me. I spotted Ella's power wheelchair. It hadn't moved for weeks. As a rolling wave the negative emotions receded from my heart; in its stead an inspired thought entered, filling me with determination and insight. The wheelchair that serves as Ella's physical connection to so many aspects of the world she lives in must be able to be utilized. The inspiration became determination.
I stood and went to the wheelchair. I lifted one of the armrests to explore how it might be adjusted. Ella is very possessive of her chair and asked what I was doing. I told her that maybe, just maybe, I could make it so that she could use the chair instead of the medical stroller. Her eyes lit up. And for the next several hours, as I worked on adjusting heights, angles, and attached equipment--she sat watching, waiting, anticipating, and hoping.
Lindsay joined me in the endeavor and between the two us we worked our way to a solution. We made sure safety was a priority and comfort followed suit. Before the sun went down we were finished and the moment of truth stood before us...staring us in the face.
Placing Ella in the chair provoked anxiety for all. Her posture was quite different since that last time we placed her in it. We tinkered a bit with positioning; reassured her that she was safe and secure. With eagerness and trepidation Ella turned the chair on. Within 30 seconds she was cruising our hallways and rooms as if she never missed a beat. We opened the garage door. Down the ramp she flew and out into the brightness of the day; spinning, racing, and smiling a smile that only a child can produce.
A sense of satisfaction overwhelmed me. Yet I knew we weren't alone in this. God has been so gracious, so important, and so loving...we are blessed beyond measure. This was no different; He was there.
Ella's spirits rose that day. Her healing has taken on a new phase. She said to Lindsay on the way to church, "See Mommy, I feel like everything is normal...I just have a cast on!"
We still have a ways to go...nights are not as rough as they were a week ago but days are great. We are looking forward to our first follow-up appt. with the surgeon (April 18) to see how healing is progressing. We still have to keep her on pain medication but that has lessened over time. All in all, we're on the right path.
We continue to pray for healing, strength, and guidance. God is unfailing in all. He has placed before us a task to complete. He has placed before us children to care for--surrounded by circumstances not many will experience. He provides blessings for us to use in order to best care for our family, and at the same time, provides inspiration. Ours is a road less travelled; a road that often captures our emotions, taking them to extremes. A road, without question, that leads us back to Him.
She is realizing and expressing her frustration associated with the confining nature of not only her hip surgery, but with SMA in general. Much too much for a five-and-a half year old to have to endure. Cries of "It's not fair" have resonated throughout the house. And she's right...it isn't fair.
Before the surgery, Ella had never really claimed that life was unfair. She gracefully accepted her limitations and often astounded us at her resilience, adaptive nature, and positive outlook on life. When things seemingly were out of her reach she suggested a way to accomplish her goal in a modified way. She has taught us that if you simply step back, take a moment to see the situation for what it is, take what you already have, and modify it to allow her access--then she can participate. One of our goals in this healing process is for her to fully return to that inspired and wise child.
Ava had a friend over this past week. All three kids like to play together when this friend is over. The four kids were sitting in the living room. Ava, Henry and the friend were sitting on the couch and Ella was confined to her adaptive medical chair. They were deciding what to do. Ella quickly realized that the other three would soon be moving about...from room to room or from inside to outside. The protests began.
"It's not fair" Ella claimed, "they get to move around and I won't be able to play; no one will push me and even if they did, that's no fun."
The other kids, who usually are able to figure out a way for Ella to play, were dumbfounded. Nonetheless they wanted to play by moving around, not sitting idle. The dilemma grew into arguing and fighting. Eventually Henry left. Ava and her friend stuck around for a while, maybe 5 minutes, until they decided to go to the friend's house instead. Ella, still in the same spot from when the friend arrived, was silent. She was abandoned and there was nothing she could do. She couldn't move herself, she couldn't advocate for herself, she couldn't participate. She sat in silent contemplation, most likely thinking about how SMA has limited her.
I sat and watched this happen. My heart broke for Ella. It broke for all of the kids because I knew how much they loved playing together (even though they fight at times!). I felt the frustration, the anger, and the destitution as a result of SMA's intrusion on their collective childhoods. I breathed deeply to myself, trying to thwart the emotions that seep in each and every day...the emotions that want me to cry out, "SMA sucks. SMA is a terrible disease that no one should have to endure. SMA has robbed my family of so much." I was faced with a choice. I could allow the negative emotions that infiltrate our household once again take hold of me or I could use what God has given me and find a way to make things better.
Ella sat in silence. The room was quiet. I looked around, hoping that something would come to me. I spotted Ella's power wheelchair. It hadn't moved for weeks. As a rolling wave the negative emotions receded from my heart; in its stead an inspired thought entered, filling me with determination and insight. The wheelchair that serves as Ella's physical connection to so many aspects of the world she lives in must be able to be utilized. The inspiration became determination.
I stood and went to the wheelchair. I lifted one of the armrests to explore how it might be adjusted. Ella is very possessive of her chair and asked what I was doing. I told her that maybe, just maybe, I could make it so that she could use the chair instead of the medical stroller. Her eyes lit up. And for the next several hours, as I worked on adjusting heights, angles, and attached equipment--she sat watching, waiting, anticipating, and hoping.
Lindsay joined me in the endeavor and between the two us we worked our way to a solution. We made sure safety was a priority and comfort followed suit. Before the sun went down we were finished and the moment of truth stood before us...staring us in the face.
Placing Ella in the chair provoked anxiety for all. Her posture was quite different since that last time we placed her in it. We tinkered a bit with positioning; reassured her that she was safe and secure. With eagerness and trepidation Ella turned the chair on. Within 30 seconds she was cruising our hallways and rooms as if she never missed a beat. We opened the garage door. Down the ramp she flew and out into the brightness of the day; spinning, racing, and smiling a smile that only a child can produce.
A sense of satisfaction overwhelmed me. Yet I knew we weren't alone in this. God has been so gracious, so important, and so loving...we are blessed beyond measure. This was no different; He was there.
Ella's spirits rose that day. Her healing has taken on a new phase. She said to Lindsay on the way to church, "See Mommy, I feel like everything is normal...I just have a cast on!"
We still have a ways to go...nights are not as rough as they were a week ago but days are great. We are looking forward to our first follow-up appt. with the surgeon (April 18) to see how healing is progressing. We still have to keep her on pain medication but that has lessened over time. All in all, we're on the right path.
We continue to pray for healing, strength, and guidance. God is unfailing in all. He has placed before us a task to complete. He has placed before us children to care for--surrounded by circumstances not many will experience. He provides blessings for us to use in order to best care for our family, and at the same time, provides inspiration. Ours is a road less travelled; a road that often captures our emotions, taking them to extremes. A road, without question, that leads us back to Him.
