Marley has really rebounded in 2020 and became a really sweet toddler. Her vocabulary is so expansive and that means she can both understand what we say better, but she can also tell us what she wants without as many temper tantrums. We've hit a good groove. Library on Wednesdays, gymnastics on Fridays, and reading before bed. She still drinks from a bottle; lots of milk. She nestles in and watched Curious George. She's really happy, unless I am brushing her hair.
Over the late spring and summer last year Marley got saline added to her tissue expander in her back. The port was under the skin and our amazing friend, Dr H, would do exactly as the hospital did in the video that I recorded before we left California on the trip in May. I would hold her like a football tucked under my arm so her back was fully exposed. The needle would go in and we would listen through the tears for the sound of it hitting metal. Once we felt it was in the correct spot Dr H would push the saline from the largest syringe I had ever seen. We would strive for 35ccs but the goal was 20-40ccs each fill. Marley would wiggle and scream. She would yell stop without the sound of "s". She would do everything she could to get free and I would hold her so tight. By the time we were finished she would be sweaty and clammy all over. We would say all done and most of the time she would sit up and regroup. Some of the days were hard. The first few were really hard. I would lay her on the ground after and she would thrash about. I worried she would put too much pressure laying on it and displace the fluid. I would worry that she would pop it. By the last fill I stood her down and we would walk to the front porch and she would look out over the pond. We'd always look for birds. And she had a sucker of course.
It was hard and stressful. I thought a lot about if we had made the right decision. I could see the look on Dr. L's face that she was so glad we were there and that Marley had as good as chance as any to gain some movement back. I can't tell you how many times I thought we should amputate and get it over with. The more I saw people on Instagram or anywhere with no limbs or vast differences I couldn't help second guess my own motives.
When we got back from California in May, Marley's hand was in a beautiful red cast. It stayed on for a few weeks and most people would see and openly ask me if she had a fall, poor thing. Sometimes I didn't say much. Sometimes I would say she had corrective surgery or she was limb different. It's not that I was bothered by it, but more that I had to seriously consider how I have acted towards anyone with differences. I have a friend who's son is in wheelchair. We don't see each other much, but I know they've went through such hard times. When I did see them last I had a hard time looking at him... I love this little kiddo and yet I can't look at him like I do anyone else, because I am so afraid that he will see through my eyes that I am sad. I am not sure that I don't look with heartache, insecurity or pity. And that is so scary to me. He doesn't have the problem, I do. I am scared to death that anyone would think that I am grateful that Marley isn't dealing with more than she is and yet I am so grateful. Perspective shows us to be happy for exactly where we are at, but is that at the expense of saying at least we are not as bad off as them. I have struggled with saying Marley is limb different. She was born with two hands that were the same at birth. People with amniotic band syndrome don't have the limb. Are they more limb different than Marley? When I post the pictures of my girl and they don't show her hand would you think she had no difference and wonder why I am posting. When I see other posts and don't see the difference, sometimes that is what I think and I look hard at the images. I can't help but have a desire to know what we are all dealing with and for hope that Marley will be okay with whatever she ends up with.
When they took the cast off, several weeks after we had been back home in Ohio, I sat in disbelief in the OT office as I stared at my little girl's hand. It was so tiny and so flat. I think I thought it would somehow have been transformed with the ridges of the fingers bent the way I am typing on a keyboard now. But they were stick straight. I guess I kind of forgotten what it looked like. The OT therapist Miss B was so happy with it- said it looked amazing. She was right that it did. There in the back of the hand was a football shaped transplanted skin that made her twisted hand be able to be repositioned so much more in the future. The first of many surgeries. It was my daughter's hand and it was beautiful. But I feel so compelled to share that I also sat in the parking lot and sobbed after, while Marley watched George in her car seat. I knew whole heartedly that I had held on to this idea that she would be exactly the same on both sides. That somehow she would be given back the hand that she was born with. I knew that my heart broke a little that day because I knew that she would have surgeries and pain that this momma couldn't fix. I knew that someone else out there would not be able to look at her because they just didn't know what to say. And I felt guilty for thinking all these things.
I would feel horrible if anyone thought less than when I avert my gaze it is because I so deeply love people and never in a million years want to make anyone feel anything less than they are perfect and I believe that. I am amazed by people- what their determination can do. I am amazed that our surgeon put herself out there in the world of Instagram and was willing to take a chance on this little girl from Ohio.
I'll finish with this: Two nights ago Marley was brushing her teeth with me in the bathroom. She was on the stool so she could reach the sink. I wiped her face off and was flossing my teeth when she holds up both of her hands as she's making faces in the mirror. She says "I have two hands". I stop and look at her, with no expression and say "yes, you do". She looks at them. She looks at her right one that I call Roo and says "one little hand" and then she looks at her left one that I call Looloo, and she says "one big hand". I don't say anything but I smile. Then she nestles Roo to her face and says "I love my little hand". It is the first time she has acknowledged that she has two hands let alone they are not the same. I wanted to video it, to show it to her years from now, when she has a really hard day. But I stood there in awe and bottled the moment up for at two years old my daughter loves herself wholeheartly. And so do I.
Over the late spring and summer last year Marley got saline added to her tissue expander in her back. The port was under the skin and our amazing friend, Dr H, would do exactly as the hospital did in the video that I recorded before we left California on the trip in May. I would hold her like a football tucked under my arm so her back was fully exposed. The needle would go in and we would listen through the tears for the sound of it hitting metal. Once we felt it was in the correct spot Dr H would push the saline from the largest syringe I had ever seen. We would strive for 35ccs but the goal was 20-40ccs each fill. Marley would wiggle and scream. She would yell stop without the sound of "s". She would do everything she could to get free and I would hold her so tight. By the time we were finished she would be sweaty and clammy all over. We would say all done and most of the time she would sit up and regroup. Some of the days were hard. The first few were really hard. I would lay her on the ground after and she would thrash about. I worried she would put too much pressure laying on it and displace the fluid. I would worry that she would pop it. By the last fill I stood her down and we would walk to the front porch and she would look out over the pond. We'd always look for birds. And she had a sucker of course.
It was hard and stressful. I thought a lot about if we had made the right decision. I could see the look on Dr. L's face that she was so glad we were there and that Marley had as good as chance as any to gain some movement back. I can't tell you how many times I thought we should amputate and get it over with. The more I saw people on Instagram or anywhere with no limbs or vast differences I couldn't help second guess my own motives.
When we got back from California in May, Marley's hand was in a beautiful red cast. It stayed on for a few weeks and most people would see and openly ask me if she had a fall, poor thing. Sometimes I didn't say much. Sometimes I would say she had corrective surgery or she was limb different. It's not that I was bothered by it, but more that I had to seriously consider how I have acted towards anyone with differences. I have a friend who's son is in wheelchair. We don't see each other much, but I know they've went through such hard times. When I did see them last I had a hard time looking at him... I love this little kiddo and yet I can't look at him like I do anyone else, because I am so afraid that he will see through my eyes that I am sad. I am not sure that I don't look with heartache, insecurity or pity. And that is so scary to me. He doesn't have the problem, I do. I am scared to death that anyone would think that I am grateful that Marley isn't dealing with more than she is and yet I am so grateful. Perspective shows us to be happy for exactly where we are at, but is that at the expense of saying at least we are not as bad off as them. I have struggled with saying Marley is limb different. She was born with two hands that were the same at birth. People with amniotic band syndrome don't have the limb. Are they more limb different than Marley? When I post the pictures of my girl and they don't show her hand would you think she had no difference and wonder why I am posting. When I see other posts and don't see the difference, sometimes that is what I think and I look hard at the images. I can't help but have a desire to know what we are all dealing with and for hope that Marley will be okay with whatever she ends up with.
When they took the cast off, several weeks after we had been back home in Ohio, I sat in disbelief in the OT office as I stared at my little girl's hand. It was so tiny and so flat. I think I thought it would somehow have been transformed with the ridges of the fingers bent the way I am typing on a keyboard now. But they were stick straight. I guess I kind of forgotten what it looked like. The OT therapist Miss B was so happy with it- said it looked amazing. She was right that it did. There in the back of the hand was a football shaped transplanted skin that made her twisted hand be able to be repositioned so much more in the future. The first of many surgeries. It was my daughter's hand and it was beautiful. But I feel so compelled to share that I also sat in the parking lot and sobbed after, while Marley watched George in her car seat. I knew whole heartedly that I had held on to this idea that she would be exactly the same on both sides. That somehow she would be given back the hand that she was born with. I knew that my heart broke a little that day because I knew that she would have surgeries and pain that this momma couldn't fix. I knew that someone else out there would not be able to look at her because they just didn't know what to say. And I felt guilty for thinking all these things.
I would feel horrible if anyone thought less than when I avert my gaze it is because I so deeply love people and never in a million years want to make anyone feel anything less than they are perfect and I believe that. I am amazed by people- what their determination can do. I am amazed that our surgeon put herself out there in the world of Instagram and was willing to take a chance on this little girl from Ohio.
I'll finish with this: Two nights ago Marley was brushing her teeth with me in the bathroom. She was on the stool so she could reach the sink. I wiped her face off and was flossing my teeth when she holds up both of her hands as she's making faces in the mirror. She says "I have two hands". I stop and look at her, with no expression and say "yes, you do". She looks at them. She looks at her right one that I call Roo and says "one little hand" and then she looks at her left one that I call Looloo, and she says "one big hand". I don't say anything but I smile. Then she nestles Roo to her face and says "I love my little hand". It is the first time she has acknowledged that she has two hands let alone they are not the same. I wanted to video it, to show it to her years from now, when she has a really hard day. But I stood there in awe and bottled the moment up for at two years old my daughter loves herself wholeheartly. And so do I.
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