We are still waiting for Cam's genetic test results to come back. This is the worst feeling in the world. I want to know sooo bad, but then again I don't. Knowing that Cam may be autisitc makes me see the little things I wasn't seeing before. The behaviors he has, the tics, the inability to express what exactly he feels.
Growing up I always told myself that if God decided to give me a special needs child I would be the luckiest mom. That he trusted me to take care of one of his special children was a gift. I still feel that way, but also see how nieve I was. It's hard. There are days when I feel so angry and cheated.
Cam relys on me for EVERYTHING! He is at a point that I am the one he wants for everything. He does not want Daddy to even touch him sometimes. This wears me out and hurts Matt's feelings. If I were to leave while Cam is awake he will scream until I return.
I love my little boy. Every time he wraps his arms around my neck and squeezes I'm reminded how special he is. He is so very smart. He recognises letters. Can do puzzles like no one's business. I love my boy and hope that I can give him every opportunity that he deserves.
Tuesday, July 26, 2011
Thursday, July 7, 2011
A Hard Blow
I have felt for a long time that there had to be something bigger going on with my son. I just knew that it wasn't just random coincidences. After fighting for what I feel, I got my answer today.
My son is Autistic.
I took Cam to the Genetocist today. When we got there he had a full evaluation with an occupational therapist to test his cognitive, fine, and gross motor skills. That went well. He tested above average in cognitive ability, slightly above average in fine motor, but below average in gross motor. She and I discussed ways to help him in those areas then went back to our room to wait for Dr. Escobar.
The doctor came in and asked me why I was here. I voiced my concerns and how I've been brushed aside when I voiced my concerns to others (excluding our amazing ped). He commented that moms know when there is something going on. He agreed that more docs need to listen to what we are saying. He then did a physical exam and told me what he was seeing.
Aside from the obvious developmental issues, he noticed Hypotonia, loose joints, short fingers, and a larger head in relation to his face size. All physical markers of autism.
He is testing him for a few more genetic disorders, but said he felt comfortable telling me he has autism. I was relieved and terrified at the same time. I'm sad for the dreams I had for him, but happy that we can now move forward and know how better to assist him.
We have a long road ahead of us.
To my husband if you are reading this,
I know you don't want everyone to know, but this is how I cope. I hope that you will be patient with me as I find my way to being a better mother and advocate to our Miracle Babies.
My son is Autistic.
I took Cam to the Genetocist today. When we got there he had a full evaluation with an occupational therapist to test his cognitive, fine, and gross motor skills. That went well. He tested above average in cognitive ability, slightly above average in fine motor, but below average in gross motor. She and I discussed ways to help him in those areas then went back to our room to wait for Dr. Escobar.
The doctor came in and asked me why I was here. I voiced my concerns and how I've been brushed aside when I voiced my concerns to others (excluding our amazing ped). He commented that moms know when there is something going on. He agreed that more docs need to listen to what we are saying. He then did a physical exam and told me what he was seeing.
Aside from the obvious developmental issues, he noticed Hypotonia, loose joints, short fingers, and a larger head in relation to his face size. All physical markers of autism.
He is testing him for a few more genetic disorders, but said he felt comfortable telling me he has autism. I was relieved and terrified at the same time. I'm sad for the dreams I had for him, but happy that we can now move forward and know how better to assist him.
We have a long road ahead of us.
To my husband if you are reading this,
I know you don't want everyone to know, but this is how I cope. I hope that you will be patient with me as I find my way to being a better mother and advocate to our Miracle Babies.
Tuesday, May 3, 2011
bearing my soul
I always try to be the strong one. I have since I was little. I felt it was up to me to hold everything together. I give and give until I have nothing left. I always put everyone else before myself. In doing this, I've learned to keep my feelings, worries and fears to myself. I find myself wishing people could just read my mind, know what I'm feeling, and tell me it will all be ok.
Lately I've been feeling very envious of those around me. People are graduating with degrees, landing great jobs, and even buying homes. I've been feeling like a failure for a while. I made a bad decision to take some time off school to find a better one. That didn't happen. I ended up in an abusive relationship and it all went downhill from there. I want so badly to go back to school. I want to be a Pharmacy Tech. It wouldn't take me that long to do, but you need money and time to do that. Maybe one day.
The immediate future scares the crap out of me. Matt landed a great job. He's excited about it and looks forward to finishing his training and getting in the feild. When that happens we are looking at 60-70 hour weeks; 6-7 days. While this will ensure that we are financially secure (more than we have ever been) and makes it possible for me to stay at home, I realise that this basically means I will be "single" mom. With his old job, I was on my own 8 hours a day 5 days a week and thought that was hard. I won't have someone to lean on. Kudos to all you single moms who raise your own children AND have full time jobs. I don't know how you do it.
I've been wanting to ask or help so much lately. Everyone has jobs or they are busy. Some people just don't want to deal with the extra demands that come with taking care of my son. I am blessed to have three wonderful women that help when they can. My amazing, wonderful cousin Jennifer is my rock. She has been known to drop what she is doing and be there for me when I need her the most. She is who I aspire to be like. She has such a giving heart. I was also blessed to have met my friend Amy. She's my "been there, done that" advice giver. She has three amazing kiddos of her own. Although our children are vastly different she is always there t help me figure out the best way to do things. She has also been there through some of my hardest times. She is so understanding. She takes me for what I am. She pulled me out of my depression after my son was born. She's like the light at the end of my tunnel. If I'm having a bad day I'll give her a call. She always has some funny story about something her kids did or said and I forget all about why i was upset to begin with. She's also been key in helping me deal with my "disorder". I know God put her in my path to show me that I can do it. She's been living the life I'm headed for for a while now. She does it with such grace and patience. She wouldn't agree but she does. And then there is Sherri and her kids. What can I say. You are one f the few brave souls to keep my children so that I can have a quiet HOT dinner every once in a while. A million thank you's!!!
I miss my family. Plain and simple. I miss the holidays at my grandmas. I miss family reunions. I miss feeling like I belong where I am. Don't get me wrong. I LOVE my husband's family. They have brought me in as one of their own. I just wish she got to see each other more often. Sometimes I just feel alone. I miss "my people". Sometimes you just need a hug. It's been a while since I've had a hug.
That's all I have in me to write for now. Until later, adios.
Lately I've been feeling very envious of those around me. People are graduating with degrees, landing great jobs, and even buying homes. I've been feeling like a failure for a while. I made a bad decision to take some time off school to find a better one. That didn't happen. I ended up in an abusive relationship and it all went downhill from there. I want so badly to go back to school. I want to be a Pharmacy Tech. It wouldn't take me that long to do, but you need money and time to do that. Maybe one day.
The immediate future scares the crap out of me. Matt landed a great job. He's excited about it and looks forward to finishing his training and getting in the feild. When that happens we are looking at 60-70 hour weeks; 6-7 days. While this will ensure that we are financially secure (more than we have ever been) and makes it possible for me to stay at home, I realise that this basically means I will be "single" mom. With his old job, I was on my own 8 hours a day 5 days a week and thought that was hard. I won't have someone to lean on. Kudos to all you single moms who raise your own children AND have full time jobs. I don't know how you do it.
I've been wanting to ask or help so much lately. Everyone has jobs or they are busy. Some people just don't want to deal with the extra demands that come with taking care of my son. I am blessed to have three wonderful women that help when they can. My amazing, wonderful cousin Jennifer is my rock. She has been known to drop what she is doing and be there for me when I need her the most. She is who I aspire to be like. She has such a giving heart. I was also blessed to have met my friend Amy. She's my "been there, done that" advice giver. She has three amazing kiddos of her own. Although our children are vastly different she is always there t help me figure out the best way to do things. She has also been there through some of my hardest times. She is so understanding. She takes me for what I am. She pulled me out of my depression after my son was born. She's like the light at the end of my tunnel. If I'm having a bad day I'll give her a call. She always has some funny story about something her kids did or said and I forget all about why i was upset to begin with. She's also been key in helping me deal with my "disorder". I know God put her in my path to show me that I can do it. She's been living the life I'm headed for for a while now. She does it with such grace and patience. She wouldn't agree but she does. And then there is Sherri and her kids. What can I say. You are one f the few brave souls to keep my children so that I can have a quiet HOT dinner every once in a while. A million thank you's!!!
I miss my family. Plain and simple. I miss the holidays at my grandmas. I miss family reunions. I miss feeling like I belong where I am. Don't get me wrong. I LOVE my husband's family. They have brought me in as one of their own. I just wish she got to see each other more often. Sometimes I just feel alone. I miss "my people". Sometimes you just need a hug. It's been a while since I've had a hug.
That's all I have in me to write for now. Until later, adios.
Wednesday, February 23, 2011
I'm a special needs momma
When I was 18, I got a job as a home health care worker. I loved my job. I loved that I got to work with people with special needs. It made me fell good that I was helping someone live independently and happy. Little did I know that God was preparing me for my future.
Cameron was born November 26, 2008. He was a stubborn little guy. After 26 hours of labor, he was delivered by emergency c-section. Other than a little jaundice, he was a very healthy 7lb 14oz little boy. He refused to breastfeed. This was just the beginning.
When he was 3 months old, I noticed that he would break out in a rash shortly after eating. I asked my pediatrician about it and he just brushed it off. I went back three times about it and finally got a smartelic response that I could change his formula. Did that. Went to soy and the rash went away, but he was still projectile vomiting all the time. "It's just reflux." Bull. When he was 6 months old, he kept gagging and choking on baby food. "He probably just doesn't like that kind. Try another." Went back three times about him choking on purees. the last time his ped was behind so we saw his partner. He ordered a swallow study and low and behold, Cameron has moderate dysphagia. Go figure!!
Cameron was referred to a Gastroenterologist. We found out through her that he had Eosinophilic Esophagitis. She sent us to an allergist, who found that Cameron was allergic to nearly EVERYTHING he was eating. We started a new formula and started avoiding food. The only approved food was sweet potatoes and pears. He started having trouble loosing weight. I took him to his Ped who then had the you know whats to tell me to just feed him the foods he's allergic to because, "I've never heard of someone being allergic to some of these things." As if just because he never saw it it doesn't exist. That was the last time he ever saw my son. We switched to a ped who was a friend of mine. She took me seriously and believed me when i felt something was wrong. So far I've been right 99.9% of the time.
Cameron is now eating through a G-tube. He has bulked up and is no longer the sack of bones he once was. He has a Moderate speech delay, fine motor delay, and some left side weakness. He sees an Occupational therapist, speech therapist, nutritionist, and soon a developmental therapist once a week. He sees a Gastroenterologist, Neurologist, Allergist, and soon a Developmental Ped.
I am asked all the time how I do it. I have two under two, one of which is a special needs child. I do it because I have to. God gave me my special boy and blessed me with my daughter. I am my sons voice. I fight for him tooth and nail. That's my job as his mother. Everyone always asks how I'm doing emotionally with all the stress. Truthfully, I have days where I want to cry and ask God why my son can't be normal, but what good will that do? There is no point is constantly dwelling on the negative. If I do that, I will loose my will to fight for him. I choose to be strong and a fighter because if I'm not, he looses. Not me. I used to be one of those people who hated conflict. I've definitely changed that. I'm not afraid to question his doctors and fight for the test he needs at the inconvenience of those involved. I think that's why his doctors respect me like they do.
I saddens me sometimes to see mothers of normal, healthy children taking it for granted. Don't get me wrong, everyone is entitled to the occasional "this is hard", etc. Those of you that complain EVERY day about the small things should thank your lucky stars that that is all you have to complain about.
I didn't choose to be a special needs momma. It chose me and I am embracing it. Who knows. This special little boy who will grow up stronger due to the obstacles he has overcome may just turn out to be the next president, find the cure for cancer, He may just change the world. I can't wait to see.
Cameron was born November 26, 2008. He was a stubborn little guy. After 26 hours of labor, he was delivered by emergency c-section. Other than a little jaundice, he was a very healthy 7lb 14oz little boy. He refused to breastfeed. This was just the beginning.
When he was 3 months old, I noticed that he would break out in a rash shortly after eating. I asked my pediatrician about it and he just brushed it off. I went back three times about it and finally got a smartelic response that I could change his formula. Did that. Went to soy and the rash went away, but he was still projectile vomiting all the time. "It's just reflux." Bull. When he was 6 months old, he kept gagging and choking on baby food. "He probably just doesn't like that kind. Try another." Went back three times about him choking on purees. the last time his ped was behind so we saw his partner. He ordered a swallow study and low and behold, Cameron has moderate dysphagia. Go figure!!
Cameron was referred to a Gastroenterologist. We found out through her that he had Eosinophilic Esophagitis. She sent us to an allergist, who found that Cameron was allergic to nearly EVERYTHING he was eating. We started a new formula and started avoiding food. The only approved food was sweet potatoes and pears. He started having trouble loosing weight. I took him to his Ped who then had the you know whats to tell me to just feed him the foods he's allergic to because, "I've never heard of someone being allergic to some of these things." As if just because he never saw it it doesn't exist. That was the last time he ever saw my son. We switched to a ped who was a friend of mine. She took me seriously and believed me when i felt something was wrong. So far I've been right 99.9% of the time.
Cameron is now eating through a G-tube. He has bulked up and is no longer the sack of bones he once was. He has a Moderate speech delay, fine motor delay, and some left side weakness. He sees an Occupational therapist, speech therapist, nutritionist, and soon a developmental therapist once a week. He sees a Gastroenterologist, Neurologist, Allergist, and soon a Developmental Ped.
I am asked all the time how I do it. I have two under two, one of which is a special needs child. I do it because I have to. God gave me my special boy and blessed me with my daughter. I am my sons voice. I fight for him tooth and nail. That's my job as his mother. Everyone always asks how I'm doing emotionally with all the stress. Truthfully, I have days where I want to cry and ask God why my son can't be normal, but what good will that do? There is no point is constantly dwelling on the negative. If I do that, I will loose my will to fight for him. I choose to be strong and a fighter because if I'm not, he looses. Not me. I used to be one of those people who hated conflict. I've definitely changed that. I'm not afraid to question his doctors and fight for the test he needs at the inconvenience of those involved. I think that's why his doctors respect me like they do.
I saddens me sometimes to see mothers of normal, healthy children taking it for granted. Don't get me wrong, everyone is entitled to the occasional "this is hard", etc. Those of you that complain EVERY day about the small things should thank your lucky stars that that is all you have to complain about.
I didn't choose to be a special needs momma. It chose me and I am embracing it. Who knows. This special little boy who will grow up stronger due to the obstacles he has overcome may just turn out to be the next president, find the cure for cancer, He may just change the world. I can't wait to see.
Tuesday, December 7, 2010
Update
I havn't been keeping up with this as much as I wanted. I am going to try to set aside one night a week to write.
I think I will just give an update on things going on with us.
Cameron is slowly getting used to his tube. If I ask him to help me with it he seems to respond better. He gets his new M-Key button the first week of January. This one will give him more freedom and will get rid of the need for him to be taped all day. Its making it hard since he is allergic/sensitive to the tape/adhesive. He has a LOT of granulation tissue that needs to be burned off. They want to wait until he gets the new button to reduce the risk of burning the good skin. We also recently discovered that his stomach isn't emptying properly. So all along he may have not been hungry all the time, but rather always full. We've made it up to 80ml/hr on his pump. He's down to 1290ml a day. Hopefully we can get up to bolus feedings once we figure his medication out for emptying his stomach. He is on an antibiotic for it that expires every 10 days. I didn't realize that when my husband picked it up they gave him one bottle of 100ml instead of 3 bottles. So this bottle expired and it says I can't get anymore until the 17th The pharmacy i went to is the same chain but a different location. She called and got it all figured out but had to order it. Guess what.... Its on back order!!! REALLY????? She called around for me though and found that out of the 4 she called one in Avon had it. yikes. On a lighter note, he has gained about 2.5 lbs. He looks so good!! He's starting to not feel bony!!
Sadie is standing on her own. She is thinking about walking. She has 2 teeth on bottom. She is also getting 2 teeth on the top but the two next to her front teeth. She will soon look like a vampire. lol She will be cute anyway. I think her hair has finally decided it will be a dark strawberry blond. We have been having a problem with Sadie having horribly acidic watery poos lately. Our amazing pediatrician had me ask Cam's GI about it. She said she wants to test her for malabsortion. Here we go. She is going to do it even though she isn't a patient. That's what happens when you see the best GI in town. Shout out Pediatric Gastroenterology Assoc. of Indiana (payton manning childrens hospital)!!!!!!!
Matt and I are doing well. I'm becoming more frustrated that no one can help me with my weight. I gained a lot with the pregnancies and am having trouble getting rid of it. I was big before and still no one could figure out why. I've been tested for everything and have been told I'm Healthier than many people they have seen. My doc said i am not getting enough calories and my body is then storing everything. yay rah. so now he tells me i need to eat to loose. not going so well. when you have 2 under 2 you often forget to eat. not to mention that i can't eat in front of Cameron for fear of hurting his feelings.
Christmas is almost here and Matt and i are uber excited to go shopping next Saturday. It's Sadie's first Christmas and the first that cam might have a clue as to what to do. It will be here before we know it!!!
I think I will just give an update on things going on with us.
Cameron is slowly getting used to his tube. If I ask him to help me with it he seems to respond better. He gets his new M-Key button the first week of January. This one will give him more freedom and will get rid of the need for him to be taped all day. Its making it hard since he is allergic/sensitive to the tape/adhesive. He has a LOT of granulation tissue that needs to be burned off. They want to wait until he gets the new button to reduce the risk of burning the good skin. We also recently discovered that his stomach isn't emptying properly. So all along he may have not been hungry all the time, but rather always full. We've made it up to 80ml/hr on his pump. He's down to 1290ml a day. Hopefully we can get up to bolus feedings once we figure his medication out for emptying his stomach. He is on an antibiotic for it that expires every 10 days. I didn't realize that when my husband picked it up they gave him one bottle of 100ml instead of 3 bottles. So this bottle expired and it says I can't get anymore until the 17th The pharmacy i went to is the same chain but a different location. She called and got it all figured out but had to order it. Guess what.... Its on back order!!! REALLY????? She called around for me though and found that out of the 4 she called one in Avon had it. yikes. On a lighter note, he has gained about 2.5 lbs. He looks so good!! He's starting to not feel bony!!
Sadie is standing on her own. She is thinking about walking. She has 2 teeth on bottom. She is also getting 2 teeth on the top but the two next to her front teeth. She will soon look like a vampire. lol She will be cute anyway. I think her hair has finally decided it will be a dark strawberry blond. We have been having a problem with Sadie having horribly acidic watery poos lately. Our amazing pediatrician had me ask Cam's GI about it. She said she wants to test her for malabsortion. Here we go. She is going to do it even though she isn't a patient. That's what happens when you see the best GI in town. Shout out Pediatric Gastroenterology Assoc. of Indiana (payton manning childrens hospital)!!!!!!!
Matt and I are doing well. I'm becoming more frustrated that no one can help me with my weight. I gained a lot with the pregnancies and am having trouble getting rid of it. I was big before and still no one could figure out why. I've been tested for everything and have been told I'm Healthier than many people they have seen. My doc said i am not getting enough calories and my body is then storing everything. yay rah. so now he tells me i need to eat to loose. not going so well. when you have 2 under 2 you often forget to eat. not to mention that i can't eat in front of Cameron for fear of hurting his feelings.
Christmas is almost here and Matt and i are uber excited to go shopping next Saturday. It's Sadie's first Christmas and the first that cam might have a clue as to what to do. It will be here before we know it!!!
Tuesday, October 12, 2010
Cheated
Today was a really hard day. I was diagnosed with narcolepsy about a month ago. I've had a problem with it for about two years now. I don't know why it took so long to become a problem. It may have been that for many years i worked nights and slept days "masking" the symptoms. My neurologist started me on medication to help me stay awake during the day. It worked great for a while. I felt "normal". Then it started to fade. I have good days and I have bad days. It seems worse now though. I think its due to knowing what normal feels like, so that now I'm more aware of the fatigue. Some days all i can do is count down the hours to nap time so that i can sleep. Its frustrating. I'm so tired during the day and then when its time to go to sleep at night i can't. Then i want to sleep in and ask Matt to get up with the kids so i can sleep as much as possible.
I feel like I'm letting my family down. I can't get down on the floor to play with my kids because I feel like I'm going to fall asleep. I get short with my son because I'm so tired then feel like the worst mom. Matt doesn't understand what its like yet. I know he gets frustrated when i make him get up early nearly every day. I try to give him a day on the weekend where i get up with the kids and let him sleep. He doesn't understand how hard that is for me. When he comes home from work all he wants to do is relax. I understand that. I hate asking him to take over, but most days i am BEYOND exhausted by the time he gets home. After we get the kids in bed he always tells me to go to bed early. Its not that easy. I lay there for hours before i finally fall asleep.
How do you make someone who doesn't have this illness understand the toll it takes?? I love my husband. He is a great partner and father. I don't know if I'm asking too much or if it will just take time for him to fully grasp it. I've been reading some forums about narcolepsy and there seems to be a high rate of divorce among couples with a narcoleptic partner. I don't want to end up that way.
Bad day... bad, bad day.
I feel like I'm letting my family down. I can't get down on the floor to play with my kids because I feel like I'm going to fall asleep. I get short with my son because I'm so tired then feel like the worst mom. Matt doesn't understand what its like yet. I know he gets frustrated when i make him get up early nearly every day. I try to give him a day on the weekend where i get up with the kids and let him sleep. He doesn't understand how hard that is for me. When he comes home from work all he wants to do is relax. I understand that. I hate asking him to take over, but most days i am BEYOND exhausted by the time he gets home. After we get the kids in bed he always tells me to go to bed early. Its not that easy. I lay there for hours before i finally fall asleep.
How do you make someone who doesn't have this illness understand the toll it takes?? I love my husband. He is a great partner and father. I don't know if I'm asking too much or if it will just take time for him to fully grasp it. I've been reading some forums about narcolepsy and there seems to be a high rate of divorce among couples with a narcoleptic partner. I don't want to end up that way.
Bad day... bad, bad day.
Wednesday, September 29, 2010
Will it Never End?
Yesterday I took my daughter in for her 6 month checkup. all went well and she is finally back on her growth chart for her weight. YAY!!! I have the most AMAZING pediatrician ever. She asked how my son was doing. I began to tell her his measurements that his nutritionist had taken the previous day. She, once again, was worried about him.
A little back story:
At 10 months my son was diagnosed with dysphagia, eosinophilic esophagitis, severe reflux, and NUMEROUS food allergies. He was put on an elemental formula to help him gain weight and grow.
So she asks what hes eating. Hes been off of the formula for almost 2 months and is on soymilk and regular foods. I have been adding as many calories as I can to his milk. He gets a decent amount of calories and is still not growing. He hasn't grown in months. She then tells me she wants to test his thyroid and hormone levels. Upon the results of that he may need a growth hormone. Ok. easy enough. Then she kinda drops a bomb on me.
"I want to run a sweat test."
Me, "What does that test for?"
Doc, "Cystic Fibrosis."
Me, "ok."
Now, I'd heard "cystic fibrosis" before. It wasn't until I got home and looked it up that I remembered what it was. I immediately began to cry. When I got to the line that read "average life expectancy, 35 years", I lost it. I know she is just testing him to be sure. A lot of his symptoms would fit that diagnosis. I feel confident that he doesn't have it, but in the back of my mind I know there is still a small chance that could be the case. All I could think was that my poor little boy would never be able to have a normal life.
My husband keeps telling me not to worry and just wait for the test. "He probably doesn't have it" I wish I were as cool and confident as he is. As a mom, all I can think about are the "possibles". It's POSSIBLE he may have it... It's POSSIBLE he doesn't. I just wish we could get a definitive answer to his problems. all doctors involved agree that they havn't seen a case like my son before. He is unique.
For the next week or so I know that though I may try to hold it together, all I will do is worry. I pray the days go by fast and we can be at peace with whatever the outcome may be.
A little back story:
At 10 months my son was diagnosed with dysphagia, eosinophilic esophagitis, severe reflux, and NUMEROUS food allergies. He was put on an elemental formula to help him gain weight and grow.
So she asks what hes eating. Hes been off of the formula for almost 2 months and is on soymilk and regular foods. I have been adding as many calories as I can to his milk. He gets a decent amount of calories and is still not growing. He hasn't grown in months. She then tells me she wants to test his thyroid and hormone levels. Upon the results of that he may need a growth hormone. Ok. easy enough. Then she kinda drops a bomb on me.
"I want to run a sweat test."
Me, "What does that test for?"
Doc, "Cystic Fibrosis."
Me, "ok."
Now, I'd heard "cystic fibrosis" before. It wasn't until I got home and looked it up that I remembered what it was. I immediately began to cry. When I got to the line that read "average life expectancy, 35 years", I lost it. I know she is just testing him to be sure. A lot of his symptoms would fit that diagnosis. I feel confident that he doesn't have it, but in the back of my mind I know there is still a small chance that could be the case. All I could think was that my poor little boy would never be able to have a normal life.
My husband keeps telling me not to worry and just wait for the test. "He probably doesn't have it" I wish I were as cool and confident as he is. As a mom, all I can think about are the "possibles". It's POSSIBLE he may have it... It's POSSIBLE he doesn't. I just wish we could get a definitive answer to his problems. all doctors involved agree that they havn't seen a case like my son before. He is unique.
For the next week or so I know that though I may try to hold it together, all I will do is worry. I pray the days go by fast and we can be at peace with whatever the outcome may be.
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