He is beautiful inside and out!
Tuesday, March 29, 2011
My Bug, Rhagan
Thank you Lord for this day.
I have spent 246 days with my sweet angel. I can't help but count the days. I take thousands of pictures, snuggle her constantly, and love her endlessly. While feeding Aralyn earlier I began to cry. I cry a lot. I look at her nose, chin, eyes, hair, everything and try to memorize every little detail. I never want to forget those details. Rhagan walked up and patted my hand, kissed his sister, and said, "Mommy, when she goes to play with Jesus I will hold your hand and help you.". I have the sweetest, smartest, most mature 4 year old on the face of the Earth. Thank you God for him. Rhagan can walk in a room and put a smile on every single face. He is absolutely amazing! Today was a pretty good day thanks to my sweet baby boy. He may be wild, loud, hyperactive, and smelly but always by my side. He is a Mama's boy. I am strong because he needs me to be. I am kind because I want him to be. I will never forget the day when Rhagan asked me for a little sister for Christmas. I didn't really expect to get pregnant immediately after either. But I did and he was thrilled. Before we knew the sex of the baby, he insisted on calling her Elmo. Throughout my pregnancy he would rub my belly, kiss my belly, and talk to my belly. Before bed every night her would say, "Good night, Elmo. Love you.". So precious. The day I told him that his sister had a boo boo was one of the hardest days of my life. He told me over and over to kiss her boo boo and make it all better. I wish I could. Such a brave little boy. I don't talk much about Rhagan in my posts because I'm always giving an update on Aralyn but today is his day. I love him to pieces and God could not have given me a greater son! He teaches me life lessons every day and I cherish every day I have with him. He is the 4 year old who holds my heart.
Love <3
I have spent 246 days with my sweet angel. I can't help but count the days. I take thousands of pictures, snuggle her constantly, and love her endlessly. While feeding Aralyn earlier I began to cry. I cry a lot. I look at her nose, chin, eyes, hair, everything and try to memorize every little detail. I never want to forget those details. Rhagan walked up and patted my hand, kissed his sister, and said, "Mommy, when she goes to play with Jesus I will hold your hand and help you.". I have the sweetest, smartest, most mature 4 year old on the face of the Earth. Thank you God for him. Rhagan can walk in a room and put a smile on every single face. He is absolutely amazing! Today was a pretty good day thanks to my sweet baby boy. He may be wild, loud, hyperactive, and smelly but always by my side. He is a Mama's boy. I am strong because he needs me to be. I am kind because I want him to be. I will never forget the day when Rhagan asked me for a little sister for Christmas. I didn't really expect to get pregnant immediately after either. But I did and he was thrilled. Before we knew the sex of the baby, he insisted on calling her Elmo. Throughout my pregnancy he would rub my belly, kiss my belly, and talk to my belly. Before bed every night her would say, "Good night, Elmo. Love you.". So precious. The day I told him that his sister had a boo boo was one of the hardest days of my life. He told me over and over to kiss her boo boo and make it all better. I wish I could. Such a brave little boy. I don't talk much about Rhagan in my posts because I'm always giving an update on Aralyn but today is his day. I love him to pieces and God could not have given me a greater son! He teaches me life lessons every day and I cherish every day I have with him. He is the 4 year old who holds my heart.
Love <3
Thursday, March 24, 2011
Tomorrow will be better.
What a day!!!
Aralyn is not feeling so good. She has been throwing up a lot and having a hard time breathing. I just hold her and beg her to breathe. I hate that. Its hard. She can't seem to control it and nothing I do helps. I ordered her a new monitor today that hooks to her diaper and vibrates is she doesn't breathe for 15 seconds and if that doesn't startle her it will sound an alarm. I can't wait till it gets here. I think I will sleep better at night. I know her nurse knows what she's doing but there is a sick feeling that comes over you knowing that your baby stops breathing. I just pray tomorrow is a better day. She will finally get her 6 month shots. Every time she is scheduled to get them, she is running a fever. Now doctors have determined that her fever is caused by neurological problems. I realized today that she will be 8 months old in 2 days. God is so GREAT!
I found out today that March is TRISOMY AWARENESS MONTH!!! I researched and came up with a lot of information for Downs, Trisomy 18, and Trisomy 13 but no Trisomy 8. One day you will Google Trisomy 8 and an overwhelming amount of information will pull up. That is my goal!
I try to blog and keep everyone updated but if I sit down for a single moment, its to go to sleep. I will try my hardest to post more updates.
Blessings!!!
Aralyn is not feeling so good. She has been throwing up a lot and having a hard time breathing. I just hold her and beg her to breathe. I hate that. Its hard. She can't seem to control it and nothing I do helps. I ordered her a new monitor today that hooks to her diaper and vibrates is she doesn't breathe for 15 seconds and if that doesn't startle her it will sound an alarm. I can't wait till it gets here. I think I will sleep better at night. I know her nurse knows what she's doing but there is a sick feeling that comes over you knowing that your baby stops breathing. I just pray tomorrow is a better day. She will finally get her 6 month shots. Every time she is scheduled to get them, she is running a fever. Now doctors have determined that her fever is caused by neurological problems. I realized today that she will be 8 months old in 2 days. God is so GREAT!
I found out today that March is TRISOMY AWARENESS MONTH!!! I researched and came up with a lot of information for Downs, Trisomy 18, and Trisomy 13 but no Trisomy 8. One day you will Google Trisomy 8 and an overwhelming amount of information will pull up. That is my goal!
I try to blog and keep everyone updated but if I sit down for a single moment, its to go to sleep. I will try my hardest to post more updates.
Blessings!!!
Sunday, March 20, 2011
God is so good!
This week A has therapy 3 days, GI appointment, and helmet appointment. The drive to Dallas is now our "normal". I'm actually at a loss for words thinking back to Thursday. I pray that Aralyn can feel the love and support. She is a brave little girl with such a rough road to follow.
Tonight, like every other night, I pray that I will have another day with my sweet Aralyn Faith.
Don't forget to hug, kiss, love your kids. Please don't take them for granted.
KLTV's piece on Aralyn Faith
KLTV's Update
Tuesday, March 15, 2011
Peaceful...
Aralyn's surgery went well! There were no complications and the doctors were able to get the job done. She woke up quickly so they gave her some pain medication and she went right back to sleep. Last night around 9 she woke up miserable so she was given morphine. Thats when it all went down... Her oxygen and blood pressure dropped. After being on oxygen for an hour and with hundreds of prayers, she is stable without assistance. Her sugar and blood pressure are being watched as well as her oxygen but so far, she is good. I don't know if its possible to be more proud of her. She is a trouper. Aralyn has been through more than most people in their entire lives. She just smiles and moves forward. I miss her smile. The last time I saw her beautiful smile was yesterday before her surgery. She is so pale and little in the bed. She was lacking sas so I put a bow on her. It made me feel better. She looks more like herself with a bow.
I know her fight is not over but I feel at peace. She has overcome her first surgery and that is HUGE! I am just so proud of her. God picked me! He picked me to the her mother. How lucky am I?!?! I have been blessed with a true miracle, a gift straight from God's hands. I am honored that my Father believes in me. What a glorious day!
I know her fight is not over but I feel at peace. She has overcome her first surgery and that is HUGE! I am just so proud of her. God picked me! He picked me to the her mother. How lucky am I?!?! I have been blessed with a true miracle, a gift straight from God's hands. I am honored that my Father believes in me. What a glorious day!
Saturday, March 12, 2011
The R Word
What a day full of emotions!!! Aralyn's surgery is another day closer. My mind is full of every "what-if" imaginable.
I got Aralyn's Easter outfit today and was overwhelmed by the experience. Shopping for clothes should be easy but its not. Every time I buy something new I ask myself "Will she ever wear this?". I never thought I would be looking for her a dress for Easter. I was promised that she would never celebrate an Easter with me. I'm sure Easter in Heaven is beautiful and loads of fun but I selfishly want her here with me. I looked at and held tons of outfits and then found the perfect one, thanks to my mom. She has a way of making things better without even trying. Aralyn and Rhagan will be matching in light blue, yellow, and white. They are getting their pictures taken tomorrow and I can't wait. To me its like being 5 on Christmas Eve. I don't know exactly what will happen but I do know that its going to be great!
While at the mall we stopped to eat. I'm rocking A's stroller and trying to keep Rhagan from spilling soy sauce on his white shirt when two men pass by. The conversation being had was appalling!
Man 1: Hey man, look at that baby. She has a helmet on.
Man 2: Yea, she must be retarded or something.
Seriously? You are grown! Be nice. I expect a conversation like that to take place between 2 kids but come on. People have no common courtesy. She is not retarded! I'm sure I looked crazy crying over my lo mein in the middle of the mall but those words were hurtful. I know God does not give you more than you can handle but sometimes I wonder if He is confused and thinks I'm stronger than I really am. I'm no superhero and I don't have a heart of stone. I'm a mom. When you say mean things about my children, it breaks my heart. Why is "different" so wrong?
Tomorrow will be a beautiful day. Tomorrow will be a new day. Tomorrow will be a blessing.
The Kilgore New Herald wrote a piece on Aralyn and it was amazing!!!
The story of Aralyn Faith.
I got Aralyn's Easter outfit today and was overwhelmed by the experience. Shopping for clothes should be easy but its not. Every time I buy something new I ask myself "Will she ever wear this?". I never thought I would be looking for her a dress for Easter. I was promised that she would never celebrate an Easter with me. I'm sure Easter in Heaven is beautiful and loads of fun but I selfishly want her here with me. I looked at and held tons of outfits and then found the perfect one, thanks to my mom. She has a way of making things better without even trying. Aralyn and Rhagan will be matching in light blue, yellow, and white. They are getting their pictures taken tomorrow and I can't wait. To me its like being 5 on Christmas Eve. I don't know exactly what will happen but I do know that its going to be great!
While at the mall we stopped to eat. I'm rocking A's stroller and trying to keep Rhagan from spilling soy sauce on his white shirt when two men pass by. The conversation being had was appalling!
Man 1: Hey man, look at that baby. She has a helmet on.
Man 2: Yea, she must be retarded or something.
Seriously? You are grown! Be nice. I expect a conversation like that to take place between 2 kids but come on. People have no common courtesy. She is not retarded! I'm sure I looked crazy crying over my lo mein in the middle of the mall but those words were hurtful. I know God does not give you more than you can handle but sometimes I wonder if He is confused and thinks I'm stronger than I really am. I'm no superhero and I don't have a heart of stone. I'm a mom. When you say mean things about my children, it breaks my heart. Why is "different" so wrong?
Tomorrow will be a beautiful day. Tomorrow will be a new day. Tomorrow will be a blessing.
The Kilgore New Herald wrote a piece on Aralyn and it was amazing!!!
The story of Aralyn Faith.
Wednesday, March 9, 2011
With every step...
In 5 days Aralyn Faith will have surgery. I realize that it is for the best and in the long run will be worth it, but in this moment I'm not OK. How do you willingly allow your child to be sedated and operated on? Is it normal to feel bad? I'm not scared, I'm terrified. What if this one surgery is what takes her life? Is God ready for her? Will Monday be the day that she goes Home? I know that these question will be unanswered until the day but my heart aches for answers. For the past year all I have been told is "I don't know.". When will someone know? It most likely won't be in her lifetime but I pray that one day there will be answers. I would never wish this upon anyone but if it happens, I want them to have the answers I never got. How do you raise awareness about something so rare, especially when it probably won't happen again? I have so many questions. I realize that my thoughts and questions are scattered but that's how my mind has been lately.
With every step forward we have learned another negative thing about A's condition. Yesterday I took her to Children's Medical Center in Dallas for Pre-Op. It was supposed to be a short, simple visit. Weight, height, stats... Instead, Aralyn's doctor noticed that her left leg is a 1/2 inch thicker and quite a bit shorter than her right. More tears, testing, scanning, and concern were the only things gained. Yes, she was cleared for surgery, but also diagnosed with a new mystery. When will it stop? When will I take her to a doctor and leave in the same condition? She will never know any different. Her normal is different than my normal and that's not fair. I want her to walk, talk, skip, and swim one day. She won't miss those activities because she never experienced them. Not fair! An innocent child is poked, cut, pulled, turned, and prodded constantly. She knows no different. I love her for who she is and how she is. There is no question about that. She is a miracle sent from God. I just want the best for her. Comfort, happiness, and quality of life are priority.
Aralyn Faith vs Trisomy 8
Aralyn - 1
Trisomy 8 - 0
(She is living!)
With every step forward we have learned another negative thing about A's condition. Yesterday I took her to Children's Medical Center in Dallas for Pre-Op. It was supposed to be a short, simple visit. Weight, height, stats... Instead, Aralyn's doctor noticed that her left leg is a 1/2 inch thicker and quite a bit shorter than her right. More tears, testing, scanning, and concern were the only things gained. Yes, she was cleared for surgery, but also diagnosed with a new mystery. When will it stop? When will I take her to a doctor and leave in the same condition? She will never know any different. Her normal is different than my normal and that's not fair. I want her to walk, talk, skip, and swim one day. She won't miss those activities because she never experienced them. Not fair! An innocent child is poked, cut, pulled, turned, and prodded constantly. She knows no different. I love her for who she is and how she is. There is no question about that. She is a miracle sent from God. I just want the best for her. Comfort, happiness, and quality of life are priority.
Aralyn Faith vs Trisomy 8
Aralyn - 1
Trisomy 8 - 0
(She is living!)
Friday, March 4, 2011
Broken.
While sitting at the doctor's office I overheard a conversation.
Little girl: Mommy, whats wrong with that baby?
Mother: Oh sweetie, she's broken.
My heart crumbled. When children think of broken things they think of junk, trash. Broken toys are no fun to play with. I know the mother meant well and was trying to keep her daughter from asking too many questions but it shouldn't be that way. How are kids supposed to learn anything if we shut them down with short, inadequate answers? My child is not broken, she is different. She is not damaged, she is specially made. She is not trash, she is a gift from God. Different should be accepted, not deterred. I am always willing to answer any questions. I know children are curious and that's OK as long as you are honest.
On another note...
Aralyn was once again admitted to Children's Medical Center. This time it was because she had a fever for 26 days and her pediatrician didn't know what else to do. She had a team of several doctors and not one knew what to do. None of them had ever seen anything like Aralyn's condition and had never heard of Trisomy 8. That's scary. You take your children to doctors because they are educated and experienced in caring for the sick. What do you do when a doctor looks at you and says, "I'm sorry Mrs. Walden, but we just don't know.". Will anyone ever know and if they do eventually find out, will it be too late?
I "what-if" all the time and I'm sure its not healthy but if I settle for "what is" I'll be letting Aralyn. I am her advocate. If I don't search for answers, who will? Her doctors decided that her fever is neurological and her "normal" will be high. When she gets sick, her temperature will be really high. I know where the nearest hospital is and her bag is always ready. I have a folder full of her medical history and information, but in that moment will I be prepared? Will I forget her bag or folder? Will I pass the hospital? What? Will? If? How? Why? Those are the questions that keep my mind racing. Those short, simple words keep me up at night. She is here today and I am learning to live in the moment. God has blessed me and believes in me. That alone is enough to make it through another day.
Little girl: Mommy, whats wrong with that baby?
Mother: Oh sweetie, she's broken.
My heart crumbled. When children think of broken things they think of junk, trash. Broken toys are no fun to play with. I know the mother meant well and was trying to keep her daughter from asking too many questions but it shouldn't be that way. How are kids supposed to learn anything if we shut them down with short, inadequate answers? My child is not broken, she is different. She is not damaged, she is specially made. She is not trash, she is a gift from God. Different should be accepted, not deterred. I am always willing to answer any questions. I know children are curious and that's OK as long as you are honest.
On another note...
Aralyn was once again admitted to Children's Medical Center. This time it was because she had a fever for 26 days and her pediatrician didn't know what else to do. She had a team of several doctors and not one knew what to do. None of them had ever seen anything like Aralyn's condition and had never heard of Trisomy 8. That's scary. You take your children to doctors because they are educated and experienced in caring for the sick. What do you do when a doctor looks at you and says, "I'm sorry Mrs. Walden, but we just don't know.". Will anyone ever know and if they do eventually find out, will it be too late?
I "what-if" all the time and I'm sure its not healthy but if I settle for "what is" I'll be letting Aralyn. I am her advocate. If I don't search for answers, who will? Her doctors decided that her fever is neurological and her "normal" will be high. When she gets sick, her temperature will be really high. I know where the nearest hospital is and her bag is always ready. I have a folder full of her medical history and information, but in that moment will I be prepared? Will I forget her bag or folder? Will I pass the hospital? What? Will? If? How? Why? Those are the questions that keep my mind racing. Those short, simple words keep me up at night. She is here today and I am learning to live in the moment. God has blessed me and believes in me. That alone is enough to make it through another day.
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