The Tiny Titan
Okay, yes I know that the titans of Greek Mythology were giants, but so is my Tiny Titan. I'm talking about Segunda. My Mighty Girl.
I'm learning that she is an amazing fighter. She was born with a rare genetic bone disease that kills 50% of people born with it and many think that anyone born with it outside of "the West" has a survival rate of probably 0%. But it's not 0% because ... Segunda.
We have been her parents for a little over four months and in that time period, she has shown us how truly titanic she is. She has pains in her bones and we can tell because there are days when I can't really touch her legs for lotion or bathing without her shoving my hand away and fussing at me. But she smiles the next second. When her teeth become loose, I think that comes with some pain too, because she screams and cries when I brush her teeth no matter how gentle I am. But when it's over, her favorite thing to do is hug me, press her face against mine and look at us in the bathroom mirror with a smile on her face.
She has gone through serial casts on her hands and currently wears removable casts at night and they are uncomfortable. But during each cast change, she held her hands up for her Occupational Therapist to make her another set. Each night, she holds one hand in the air for the removable cast and then holds up the other one. She wakes up every morning with a huge smile on her face. We just started serial casting on her legs a week and a half ago. The first week, went just fine, but the second week had a hiccup. She had pain the second round in her right foot and focused on that foot from Friday through Monday trying to get herself some relief. We thought her toes were cramping and spent considerable time rubbing her toes which seemed to provide her some comfort. Well, little Segunda took matters into her own hands and just took the darn cast off. Once off, we saw why she was complaining so much. She had a sizable bright purple bruise and blister on her heel. I wanted to cry. I didn't because if she can handle it, so can I. Instead I got out the neosporin and bandaid and she held up her little foot for some TLC and bandaging.
She is trying to learn new words and they come out sounding like she has a mouth full of marbles, but she is missing most of her front teeth so sounds like "sss" she can't make. This morning she tried to say "more cereal" and it came out "mo dedia" but she is trying so hard. I can't wait until I can finally interpret her sounds because I'm confident they are words to her. She never gets frustrated with me unless I give up and then she screams at me. But if I keep trying so does she. She makes herself understood and has the patience to wait for me to catch on.
Being her mother is my happiness. Yesterday, at Prima's (yes being her mother is my happiness too) karate class, I was waiting just outside the classroom with Segunda and another mother came up to me and started asking questions about Segunda's casts and what was going on. Because I believe in educating people who are asking honest questions, I told her all about Segunda's diagnosis. Then she looked at me with the deepest sympathy, patted my shoulder and said, "Good job, Mom." I'm so confused by that response. I don't need sympathy. I get to be her Mom. Are you kidding? It is nothing but joy to watch her triumph over her world. Stairs - climbs them. Chairs - climbs them and sits in them. Bookshelves - sits at the base of them and shouts at someone until she gets their attention and gets what she wants. Cabinets - explores them. Food - mastered the spoon and eats with gusto. And on and on.
Segunda, my promise to you is to help you navigate your world as much as you will let me, but I think you got this and I think you know it.
I'm learning that she is an amazing fighter. She was born with a rare genetic bone disease that kills 50% of people born with it and many think that anyone born with it outside of "the West" has a survival rate of probably 0%. But it's not 0% because ... Segunda.
We have been her parents for a little over four months and in that time period, she has shown us how truly titanic she is. She has pains in her bones and we can tell because there are days when I can't really touch her legs for lotion or bathing without her shoving my hand away and fussing at me. But she smiles the next second. When her teeth become loose, I think that comes with some pain too, because she screams and cries when I brush her teeth no matter how gentle I am. But when it's over, her favorite thing to do is hug me, press her face against mine and look at us in the bathroom mirror with a smile on her face.
She has gone through serial casts on her hands and currently wears removable casts at night and they are uncomfortable. But during each cast change, she held her hands up for her Occupational Therapist to make her another set. Each night, she holds one hand in the air for the removable cast and then holds up the other one. She wakes up every morning with a huge smile on her face. We just started serial casting on her legs a week and a half ago. The first week, went just fine, but the second week had a hiccup. She had pain the second round in her right foot and focused on that foot from Friday through Monday trying to get herself some relief. We thought her toes were cramping and spent considerable time rubbing her toes which seemed to provide her some comfort. Well, little Segunda took matters into her own hands and just took the darn cast off. Once off, we saw why she was complaining so much. She had a sizable bright purple bruise and blister on her heel. I wanted to cry. I didn't because if she can handle it, so can I. Instead I got out the neosporin and bandaid and she held up her little foot for some TLC and bandaging.
She is trying to learn new words and they come out sounding like she has a mouth full of marbles, but she is missing most of her front teeth so sounds like "sss" she can't make. This morning she tried to say "more cereal" and it came out "mo dedia" but she is trying so hard. I can't wait until I can finally interpret her sounds because I'm confident they are words to her. She never gets frustrated with me unless I give up and then she screams at me. But if I keep trying so does she. She makes herself understood and has the patience to wait for me to catch on.
Being her mother is my happiness. Yesterday, at Prima's (yes being her mother is my happiness too) karate class, I was waiting just outside the classroom with Segunda and another mother came up to me and started asking questions about Segunda's casts and what was going on. Because I believe in educating people who are asking honest questions, I told her all about Segunda's diagnosis. Then she looked at me with the deepest sympathy, patted my shoulder and said, "Good job, Mom." I'm so confused by that response. I don't need sympathy. I get to be her Mom. Are you kidding? It is nothing but joy to watch her triumph over her world. Stairs - climbs them. Chairs - climbs them and sits in them. Bookshelves - sits at the base of them and shouts at someone until she gets their attention and gets what she wants. Cabinets - explores them. Food - mastered the spoon and eats with gusto. And on and on.
Segunda, my promise to you is to help you navigate your world as much as you will let me, but I think you got this and I think you know it.
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