Saturday, March 30, 2013
Mommy's Miracles: A Defining Moment
Mommy's Miracles: A Defining Moment: November 2007- "Your uterus is under extreme stress. It may hemorrhage. We may not be able to save it. You may not be able to have...
A Defining Moment
November 2007-
"Your uterus is under extreme stress. It may hemorrhage. We may not be able to save it. You may not be able to have any more children. I want you to understand what you are doing to your body. I can't promise you that years later, you may lose your uterus because of the damage. If we continue the pregnancy, it will be for the betterment of the girls but to the detriment of you. They have a good chance of surviving at this point."
"Will they have issues?"
"The chance for developmental delays and lung issues are still a great risk."
"Then continue with the pregnancy. Whatever is God's will, will be. If I lose my uterus, it's worth it for their health."
December 2007-
"The girls are doing fantastically. They are the first triplets in the hospital's history that did not need NICU. Great job, Mom! We were also able to save your uterus."
February 2009-
"You have a son. You had a tough time there. You lost a lot of blood. We were able to keep your uterus but it was close."
January 2013-
"My heart hurts. Oh my God. Help me."
"Ma'am, your hemoglobin is dangerously low. Are you bleeding? Ma'am, we need to do a blood transfusion."
I stared at the doctor, baffled. I didn't understand what he was saying. He gave me a paper and I signed it. I was quickly moved out of the ER hallway into a semi -private room. Both arms had IVs. The nurses were talking about side effects and allergic reaction. I nodded without understanding.
The blood began to flow into me. It was such an odd feeling-endorphins were pumping. I felt high and my confusion started to abate. I felt good.
Hours later, after blood tests confirmed that my levels were still too low, I began the next transfusion and listened to the nurse explain the risks and reactions again. I sleepily nodded. I felt the fullness of the blood. I took a deep breathe and heard myself snore. My hands began to twitch. My feet began to twitch. I felt my blood cells explode. My eyes instantly opened. I focused on a nurse in front of me and let out a piercing wail, "Fred! Help!"
My body was contorting in pain. I was rubbing whatever I could reach against the wall. I felt insane. I wanted to ram into the wall to knock myself out. I started hearing a rasping noise, my breathing sounded funny. My words were garbled.
"Can you breathe?"
Focusing with all my might, I looked into the nurse's eyes and shook my head no. A mask was placed on my face before I passed out.
March 2013-
I felt blood gush out of my body. I put my hand to my head to make sure that I didn't pass out. I walked briskly to the bathroom. I felt the blood pouring down my legs. Something is very wrong. My instinct was screaming to go to the hospital but I was afraid to stand up again. I sat at my desk debating my next step.
I finally worked up the courage to go home. I made it into the house before I passed out from exhaustion. I was suddenly so tired. No, I didn't want to go to the hospital, I just needed to rest.
Two hours later, doubled over in pain, I made my way to the ER. Doctor after doctor checked my abdomen. CAT Scans, X-rays, exams later...
"I'm sorry. We know that you are in pain but we've ruled out all life threatening situations. We're clearing you to go home."
"What am I supposed to do about the pain? I can't live like this. I can't stand up."
"Take some Ibuprophen."
I sat in the room and cried.
I went home and cried.
Two days later, I sat crying with my primary doctor. I was at wit's end. It was my birthday and I was so sad and in so much pain. I told him about the exhaustion but things looked like they were getting better. We talked about me going back to work. I was relieved.
I slowly sat in the car service. I didn't trust myself to drive anymore. I arrived home and made it up to the second floor before the waves of pain started washing over me again. I crawled up the last flight of stairs. I laid on the bed and fell instantly asleep. My husband woke me later so we could celebrate my birthday. The kids were so excited. I sat dazed on my favorite chair while my family sang the Happy Birthday song. I smiled and hugged them all. I was struggling to stand again so I sat and smiled until everyone was gone. I looked at my husband and reached out my hand, "I need your help." He walked me to the bathroom-the next room over and then walked me back to bed. "Something is not right."
Twenty minutes later, I ran to the bathroom, slamming into walls to get there. It was so bad. I felt so weak. The next two days continued in the same vain.
"I just need to get to Monday so I can go to the doctor again. The hospital didn't know what was wrong."
"It's Dr. R. I'm aware of what's going on. You need to go back to the ER."
I hung up. Grabbed my charger and kissed my husband good-bye. I knew I wasn't going home quickly.
"I'm here because I feel my hemoglobin decreasing. I'm getting symptomatic. Please check my levels."
Three hours later, two women were moved out of the OB rooms so that they could check more patients. A woman sits in the chair across from me, crying in pain. "I was just getting comfortable, why did you move me? I'm not well enough to be sitting up." My patience is thin. I don't want to hear the bitching. A resident comes to me and tells me to follow her. I stand up and blood splashes on the floor. A woman grabs me as my legs give out. A wheelchair brings me into the room I had been in earlier in the week. I hear the same woman, scream. "Oh my God! That woman is dying in the chair in front of me! I'm going to sue for mental anguish."
I'm struggling to keep my eyes open. I need to go to sleep.
"Ma'am, you need to stand up. I'm going to help you." A nurse slips an orange band on my arm. I'm a fall risk. Blood splatters on the floor again. I begin to fall forward. Someone grabs me hard and lifts me on the table. I turn and see 8 doctors staring at me. They are pulling at my clothes. I hear an alarm go off in my room. STAT. OB room 43. STAT. Rapid Response room 43. I grab a nurse near me. "What room is this?" She looks at me with concern, "Room 43."
Another group of doctors walk in. Everyone was talking over my head.
A paper was shoved in my hand. A consent for blood transfusions.
"I had an allergic reaction! I need benedryl."
A nurse added a second line. "My name is Lou. Don't go to sleep. Talk to me."
"I'm so tired."
"Do you have children? How old are you? What's your name?"
"My name is Priscilla. I'm 35. My birthday was Friday. I have four children."
I hear someone say, "At least, she already has children."
Lou asks me if I want any more children. I quickly respond, "Yes. I always wanted one more."
A doctor steps up to me, "We'll do what we can."
I fall asleep exhausted.
I wake up a while later and see a nurse camped out at my bedside. I reach for my phone and text my husband to come to the hospital. It's never good when a nurse is assigned to sit with you.
I'm being admitted. As the days pass and 4 more transfusions, numerous failed interventions. I wait for surgery. This is the last hurrah before we have to proceed with a hysterectomy.
I smile at my doctor before I'm put to sleep. "Let's do some damage!"
I wake up hours later. The resident that I have nicknamed Spiderman, comes to talk to me.
"I'm sorry. The surgery was a failure. Your doctor will discuss the next steps with you."
Two days later, I sat at home in agony. My whole body hurts from the surgery. I slept most of the days away. I saw my doctor a week post-op. I wanted to go back to work. I was so bored.
He did an exam and shook his head. "I can't clear you to work. You need a hysterectomy as soon as possible."
I looked at my husband. We knew we had to do it. It was a matter of life or death. My dream of having another child died in that office.
As I sit here, two days before the procedure, I'm in so much pain that I feel relieved that it will be over soon. And in the next breathe, I start to tear up. I close my eyes and remember the way it felt to hold my newborns. I remember the joy in my husband's face as he looked at his new children.
I look at my sleeping children and remember the doctors words, "I can't promise you that years later, you may lose your uterus..."
I made the right decision then and it's the right decision now.
"Your uterus is under extreme stress. It may hemorrhage. We may not be able to save it. You may not be able to have any more children. I want you to understand what you are doing to your body. I can't promise you that years later, you may lose your uterus because of the damage. If we continue the pregnancy, it will be for the betterment of the girls but to the detriment of you. They have a good chance of surviving at this point."
"Will they have issues?"
"The chance for developmental delays and lung issues are still a great risk."
"Then continue with the pregnancy. Whatever is God's will, will be. If I lose my uterus, it's worth it for their health."
December 2007-
"The girls are doing fantastically. They are the first triplets in the hospital's history that did not need NICU. Great job, Mom! We were also able to save your uterus."
February 2009-
"You have a son. You had a tough time there. You lost a lot of blood. We were able to keep your uterus but it was close."
January 2013-
"My heart hurts. Oh my God. Help me."
"Ma'am, your hemoglobin is dangerously low. Are you bleeding? Ma'am, we need to do a blood transfusion."
I stared at the doctor, baffled. I didn't understand what he was saying. He gave me a paper and I signed it. I was quickly moved out of the ER hallway into a semi -private room. Both arms had IVs. The nurses were talking about side effects and allergic reaction. I nodded without understanding.
The blood began to flow into me. It was such an odd feeling-endorphins were pumping. I felt high and my confusion started to abate. I felt good.
Hours later, after blood tests confirmed that my levels were still too low, I began the next transfusion and listened to the nurse explain the risks and reactions again. I sleepily nodded. I felt the fullness of the blood. I took a deep breathe and heard myself snore. My hands began to twitch. My feet began to twitch. I felt my blood cells explode. My eyes instantly opened. I focused on a nurse in front of me and let out a piercing wail, "Fred! Help!"
My body was contorting in pain. I was rubbing whatever I could reach against the wall. I felt insane. I wanted to ram into the wall to knock myself out. I started hearing a rasping noise, my breathing sounded funny. My words were garbled.
"Can you breathe?"
Focusing with all my might, I looked into the nurse's eyes and shook my head no. A mask was placed on my face before I passed out.
March 2013-
I felt blood gush out of my body. I put my hand to my head to make sure that I didn't pass out. I walked briskly to the bathroom. I felt the blood pouring down my legs. Something is very wrong. My instinct was screaming to go to the hospital but I was afraid to stand up again. I sat at my desk debating my next step.
I finally worked up the courage to go home. I made it into the house before I passed out from exhaustion. I was suddenly so tired. No, I didn't want to go to the hospital, I just needed to rest.
Two hours later, doubled over in pain, I made my way to the ER. Doctor after doctor checked my abdomen. CAT Scans, X-rays, exams later...
"I'm sorry. We know that you are in pain but we've ruled out all life threatening situations. We're clearing you to go home."
"What am I supposed to do about the pain? I can't live like this. I can't stand up."
"Take some Ibuprophen."
I sat in the room and cried.
I went home and cried.
Two days later, I sat crying with my primary doctor. I was at wit's end. It was my birthday and I was so sad and in so much pain. I told him about the exhaustion but things looked like they were getting better. We talked about me going back to work. I was relieved.
I slowly sat in the car service. I didn't trust myself to drive anymore. I arrived home and made it up to the second floor before the waves of pain started washing over me again. I crawled up the last flight of stairs. I laid on the bed and fell instantly asleep. My husband woke me later so we could celebrate my birthday. The kids were so excited. I sat dazed on my favorite chair while my family sang the Happy Birthday song. I smiled and hugged them all. I was struggling to stand again so I sat and smiled until everyone was gone. I looked at my husband and reached out my hand, "I need your help." He walked me to the bathroom-the next room over and then walked me back to bed. "Something is not right."
Twenty minutes later, I ran to the bathroom, slamming into walls to get there. It was so bad. I felt so weak. The next two days continued in the same vain.
"I just need to get to Monday so I can go to the doctor again. The hospital didn't know what was wrong."
"It's Dr. R. I'm aware of what's going on. You need to go back to the ER."
I hung up. Grabbed my charger and kissed my husband good-bye. I knew I wasn't going home quickly.
"I'm here because I feel my hemoglobin decreasing. I'm getting symptomatic. Please check my levels."
Three hours later, two women were moved out of the OB rooms so that they could check more patients. A woman sits in the chair across from me, crying in pain. "I was just getting comfortable, why did you move me? I'm not well enough to be sitting up." My patience is thin. I don't want to hear the bitching. A resident comes to me and tells me to follow her. I stand up and blood splashes on the floor. A woman grabs me as my legs give out. A wheelchair brings me into the room I had been in earlier in the week. I hear the same woman, scream. "Oh my God! That woman is dying in the chair in front of me! I'm going to sue for mental anguish."
I'm struggling to keep my eyes open. I need to go to sleep.
"Ma'am, you need to stand up. I'm going to help you." A nurse slips an orange band on my arm. I'm a fall risk. Blood splatters on the floor again. I begin to fall forward. Someone grabs me hard and lifts me on the table. I turn and see 8 doctors staring at me. They are pulling at my clothes. I hear an alarm go off in my room. STAT. OB room 43. STAT. Rapid Response room 43. I grab a nurse near me. "What room is this?" She looks at me with concern, "Room 43."
Another group of doctors walk in. Everyone was talking over my head.
A paper was shoved in my hand. A consent for blood transfusions.
"I had an allergic reaction! I need benedryl."
A nurse added a second line. "My name is Lou. Don't go to sleep. Talk to me."
"I'm so tired."
"Do you have children? How old are you? What's your name?"
"My name is Priscilla. I'm 35. My birthday was Friday. I have four children."
I hear someone say, "At least, she already has children."
Lou asks me if I want any more children. I quickly respond, "Yes. I always wanted one more."
A doctor steps up to me, "We'll do what we can."
I fall asleep exhausted.
I wake up a while later and see a nurse camped out at my bedside. I reach for my phone and text my husband to come to the hospital. It's never good when a nurse is assigned to sit with you.
I'm being admitted. As the days pass and 4 more transfusions, numerous failed interventions. I wait for surgery. This is the last hurrah before we have to proceed with a hysterectomy.
I smile at my doctor before I'm put to sleep. "Let's do some damage!"
I wake up hours later. The resident that I have nicknamed Spiderman, comes to talk to me.
"I'm sorry. The surgery was a failure. Your doctor will discuss the next steps with you."
Two days later, I sat at home in agony. My whole body hurts from the surgery. I slept most of the days away. I saw my doctor a week post-op. I wanted to go back to work. I was so bored.
He did an exam and shook his head. "I can't clear you to work. You need a hysterectomy as soon as possible."
I looked at my husband. We knew we had to do it. It was a matter of life or death. My dream of having another child died in that office.
As I sit here, two days before the procedure, I'm in so much pain that I feel relieved that it will be over soon. And in the next breathe, I start to tear up. I close my eyes and remember the way it felt to hold my newborns. I remember the joy in my husband's face as he looked at his new children.
I look at my sleeping children and remember the doctors words, "I can't promise you that years later, you may lose your uterus..."
I made the right decision then and it's the right decision now.
Tuesday, December 4, 2012
Twenty Seconds
5%
It's time for Handsome's meeting.
5%
We're holding hands as we walk into the room. It's time to hear what he needs. It's time to objectively look at the reports and adjust goals accordingly.
5%
I look at the teachers with the kind smiles. I listen quietly as they discuss his lack of safety awareness.
They are satisfied with his progress but he needs help to continue on. He needs help with his fine motor skills. He needs help processing his emotions. We need to work on his tantrums.
She's saying that he has a receptive delay. It takes him 20 seconds to process what I said. I feel like the teacher has punched me. I just thought he was ignoring me but it's worse... he doesn't understand me.
I take a deep breath. The teacher is smiling and saying that we are doing all the right things. It's time to actively focus on potty training. I'm excited but heartbroken. My baby will be trained before Bugabuga, my oldest. I take another deep breath. I can't think of the other kids right now. I can't think about their needs. I have to focus. Oh God, I can't do it. She's not trained yet. She doesn't even care. I can feel the emotion starting to choke me. I want to get out of this room. I need to leave.
I smile at the teacher. "I'm so glad to see he is progressing so well." She looks relieved that I am satisfied. "Let's discuss the 5%."Her smile fades. This conversation is not going to go as easily as she had hoped.
"Physically, he has progressed to 19 months old. It's great progress." I appreciate her ability to spin this into a positive. I leave the fact that he is 46 months old unsaid. It's more than a two year delay. He's physically functioning better than 5% of children his age. The teacher is still talking but I've hit my limit. I'm signing the papers. I'm nodding but I'm done.
We quietly make our way home. We walk into the house and Handsome comes running-arms extended (for balance?) I prefer to think it's for a hug.
"Hi Handsome! How are you? I missed you!"
He's staring at me. I'm silently counting.
18...19...20
"Hi Mommy! I missed you too!"
I give him a huge hug. I wish I could hug his teacher. She gave me a huge gift. Twenty seconds. I can help him understand. I can wait 20 seconds.
No more frustration, just understanding.
It's time for Handsome's meeting.
5%
We're holding hands as we walk into the room. It's time to hear what he needs. It's time to objectively look at the reports and adjust goals accordingly.
5%
I look at the teachers with the kind smiles. I listen quietly as they discuss his lack of safety awareness.
They are satisfied with his progress but he needs help to continue on. He needs help with his fine motor skills. He needs help processing his emotions. We need to work on his tantrums.
She's saying that he has a receptive delay. It takes him 20 seconds to process what I said. I feel like the teacher has punched me. I just thought he was ignoring me but it's worse... he doesn't understand me.
I take a deep breath. The teacher is smiling and saying that we are doing all the right things. It's time to actively focus on potty training. I'm excited but heartbroken. My baby will be trained before Bugabuga, my oldest. I take another deep breath. I can't think of the other kids right now. I can't think about their needs. I have to focus. Oh God, I can't do it. She's not trained yet. She doesn't even care. I can feel the emotion starting to choke me. I want to get out of this room. I need to leave.
I smile at the teacher. "I'm so glad to see he is progressing so well." She looks relieved that I am satisfied. "Let's discuss the 5%."Her smile fades. This conversation is not going to go as easily as she had hoped.
"Physically, he has progressed to 19 months old. It's great progress." I appreciate her ability to spin this into a positive. I leave the fact that he is 46 months old unsaid. It's more than a two year delay. He's physically functioning better than 5% of children his age. The teacher is still talking but I've hit my limit. I'm signing the papers. I'm nodding but I'm done.
We quietly make our way home. We walk into the house and Handsome comes running-arms extended (for balance?) I prefer to think it's for a hug.
"Hi Handsome! How are you? I missed you!"
He's staring at me. I'm silently counting.
18...19...20
"Hi Mommy! I missed you too!"
I give him a huge hug. I wish I could hug his teacher. She gave me a huge gift. Twenty seconds. I can help him understand. I can wait 20 seconds.
No more frustration, just understanding.
Wednesday, September 12, 2012
Nerd-gasm
There are times when I close my eyes, take a deep breathe, say a prayer, open my eyes and smile.
I read an article once that said that if you smile while unhappy, you can trick your brain into thinking that you are happy. Why the hell not? It's worth a shot.
My work gives me a true sense of joy. I love it. It's therapeutic and logical. I can watch my numbers sing and I lose myself for hours in market trends. I call this my nerd-gasm. It doesn't matter how my day started or ended; I can walk through a bookstore and watch people pick up a book, disregard it and buy another. I try to see a pattern in their choices. My numbers usually support my observations. I feel so satisfied with giving the consumer a great reading experience. I'm proud of what I do.
I'm good at what I do.
I throw myself whole-heartedly into my work during the day. I can never explain it to co-workers. I doubt that they would understand the importance of work for a special needs parent. A job for some people is just a means to an end but for me, it can be my salvation.
There are days that are so difficult.
"Bugabuga! Bugabuga! I need you to come here now! You have to go to school!"
"Ahhh! I don't want to go to school! I'm tired!"
I walk her over to our spot so that I can start dressing her. She doesn't have the balance to put her clothes on herself. When she's tired, she can barely stand and I hold on to her body weight in one hand while trying to put on her diaper with the other hand. She's not trained yet. I try not to think about it anymore. I have to hope that she will get it soon. I have to hope...
We struggle through the morning ritual. I'm slowly combing her hair. She's crying by this time. I feel a huge lump in my throat. I'll never understand why things are so hard for her; I'll never stop wishing that it was easier.
"Mommy! You're hurting me!"
She swings around and punches and pinches my arm. I feel the skin bruise and I feel so, so sad. I close my eyes. I must remain calm. I open my eyes and try to reach her. I try to explain the pain, I'm not sure that she feels pain like I do. She doesn't care either way. She's stimming now.
I grab her hands to stop her. I used to think it was so cute when she put her hands to her face. Her skin feels funny, I look down and see that she is getting a callus on one of her knuckles from biting her hand. I want to cry. Her beautiful little hands are getting affected. She struggles with me. I win. She's ready for school.
She tells me that she doesn't want to be my family anymore. I tell her that I love her anyway. She tears at my heart.
We walk to school and I hug her as she pulls away.
"I love you, Mommy! Have a wonderful day!"
I watch until she is through the doors and out of sight. I roll my shoulders to release the tension. I check my work email and immerse myself for a few minutes-just enough time to regain my composure.
I travel to work shaking off the rough start. I walk into the building and smile.
It's time to lose myself.
I read an article once that said that if you smile while unhappy, you can trick your brain into thinking that you are happy. Why the hell not? It's worth a shot.
My work gives me a true sense of joy. I love it. It's therapeutic and logical. I can watch my numbers sing and I lose myself for hours in market trends. I call this my nerd-gasm. It doesn't matter how my day started or ended; I can walk through a bookstore and watch people pick up a book, disregard it and buy another. I try to see a pattern in their choices. My numbers usually support my observations. I feel so satisfied with giving the consumer a great reading experience. I'm proud of what I do.
I'm good at what I do.
I throw myself whole-heartedly into my work during the day. I can never explain it to co-workers. I doubt that they would understand the importance of work for a special needs parent. A job for some people is just a means to an end but for me, it can be my salvation.
There are days that are so difficult.
"Bugabuga! Bugabuga! I need you to come here now! You have to go to school!"
"Ahhh! I don't want to go to school! I'm tired!"
I walk her over to our spot so that I can start dressing her. She doesn't have the balance to put her clothes on herself. When she's tired, she can barely stand and I hold on to her body weight in one hand while trying to put on her diaper with the other hand. She's not trained yet. I try not to think about it anymore. I have to hope that she will get it soon. I have to hope...
We struggle through the morning ritual. I'm slowly combing her hair. She's crying by this time. I feel a huge lump in my throat. I'll never understand why things are so hard for her; I'll never stop wishing that it was easier.
"Mommy! You're hurting me!"
She swings around and punches and pinches my arm. I feel the skin bruise and I feel so, so sad. I close my eyes. I must remain calm. I open my eyes and try to reach her. I try to explain the pain, I'm not sure that she feels pain like I do. She doesn't care either way. She's stimming now.
I grab her hands to stop her. I used to think it was so cute when she put her hands to her face. Her skin feels funny, I look down and see that she is getting a callus on one of her knuckles from biting her hand. I want to cry. Her beautiful little hands are getting affected. She struggles with me. I win. She's ready for school.
She tells me that she doesn't want to be my family anymore. I tell her that I love her anyway. She tears at my heart.
We walk to school and I hug her as she pulls away.
"I love you, Mommy! Have a wonderful day!"
I watch until she is through the doors and out of sight. I roll my shoulders to release the tension. I check my work email and immerse myself for a few minutes-just enough time to regain my composure.
I travel to work shaking off the rough start. I walk into the building and smile.
It's time to lose myself.
Tuesday, July 3, 2012
Dear 50 Cent
Dear 50 Cent,
You took my breath away today. I have no ill feelings toward you. We have no beef. But you hurt me. I was taking a moment for myself, reading twitter and Facebook. I was so relaxed and then I read your tweet.
"You look autistic."
My four children are autistic. They can speak and interact socially. They love music. They are gorgeous. We've had many people ask us to start modeling careers for them. we didn't choose that road. We choose to spend 135 hours a week with therapists in our home. Things that you take for granted-like swallowing and smiling, we had to teach our children.
I forgive you for your ignorance to what autism actually is; I honestly don't believe that you meant any harm. I ask that you think before you use the power of words. Words can have so much power-I know because I waited over 2 1/2 years to hear the word, "Ma." I watched in horror as one of my daughters lost her ability to speak during a regression and work constantly to speak again.
Words have power.
I'm writing this letter so that you can hear another voice, so you can understand how hurtful your words were to parents that work tirelessly to remove the stigma associated with their children's diagnosis.
Sincerely,
A Proud Mom
Wednesday, February 8, 2012
Mommy's Miracles: I want to run.
Mommy's Miracles: I want to run.: "I want to have Ariel hair." I slowly brushed Bugabuga's hair. We were alone in the bathroom. "I don't have friends, mom." "Of course ...
I want to run.
"I want to have Ariel hair."
I slowly brushed Bugabuga's hair. We were alone in the bathroom.
"I don't have friends, mom."
"Of course you have friends! What about Krystal?" Krystal is her parah.
"Ooohhh! Yes! Krystal loves me. I'm adorable, you know!"
"I do know. You're a great little girl."
"I'm a little girl. I can't run like CEO and Baby. They run and jump and I'm too little. I'm still a baby. I want to be a big girl. I want to run."
I stopped brushing her hair and turned her to look at me.
"You're a big girl, honey. You just can't run yet. Not everyone can run and jump. It's hard work! Right?"
"Oohh, it's very hard. I try every day but my feet can't do it. I get so tired."
My throat felt tight. My baby girl is starting to see her limitations. She's feeling bad about it. I need to make this better. I need to make her able to run. I need to find a cure for hypotonia.
The reality is there is no cure.
The reality is that she may not run. The reality is that I am over the moon that she can walk as well as she does right now. The reality is that she will more than likely need physical therapy 5 days a week for the rest of her life.
"I don't want you to get tired. Everyone is different and special in their own way. The CEO can sing, Baby can dance and you are very smart. You can write your letters and numbers so well! You can beat the Angry birds game! That's really great. You don't have to run to be great."
My husband walks over. "What are these life lessons that I'm hearing?"
"Bugabuga wants to run." I look at him helplessly.
He looks at Bugabuga, she looks at him with her usual hero worship expression.
"I can't run, Bugabuga. I hurt my leg a long time ago and I can't run anymore. It's okay though."
"YOU can't run, Daddy?" Bugabuga looked shocked. We watched her work through the thought that her Daddy couldn't do something.
"It's okay if I don't run. I'm like Daddy."
I slowly brushed Bugabuga's hair. We were alone in the bathroom.
"I don't have friends, mom."
"Of course you have friends! What about Krystal?" Krystal is her parah.
"Ooohhh! Yes! Krystal loves me. I'm adorable, you know!"
"I do know. You're a great little girl."
"I'm a little girl. I can't run like CEO and Baby. They run and jump and I'm too little. I'm still a baby. I want to be a big girl. I want to run."
I stopped brushing her hair and turned her to look at me.
"You're a big girl, honey. You just can't run yet. Not everyone can run and jump. It's hard work! Right?"
"Oohh, it's very hard. I try every day but my feet can't do it. I get so tired."
My throat felt tight. My baby girl is starting to see her limitations. She's feeling bad about it. I need to make this better. I need to make her able to run. I need to find a cure for hypotonia.
The reality is there is no cure.
The reality is that she may not run. The reality is that I am over the moon that she can walk as well as she does right now. The reality is that she will more than likely need physical therapy 5 days a week for the rest of her life.
"I don't want you to get tired. Everyone is different and special in their own way. The CEO can sing, Baby can dance and you are very smart. You can write your letters and numbers so well! You can beat the Angry birds game! That's really great. You don't have to run to be great."
My husband walks over. "What are these life lessons that I'm hearing?"
"Bugabuga wants to run." I look at him helplessly.
He looks at Bugabuga, she looks at him with her usual hero worship expression.
"I can't run, Bugabuga. I hurt my leg a long time ago and I can't run anymore. It's okay though."
"YOU can't run, Daddy?" Bugabuga looked shocked. We watched her work through the thought that her Daddy couldn't do something.
"It's okay if I don't run. I'm like Daddy."
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