If you have been following my blog for awhile, you know that I recently resigned from teaching to tend to all of Princess's needs. Yesterday we were in the neighborhood near my former school. It kind of made me sentimental about my teaching career. Princess was in the car and asked me if I miss teaching. I told her that most days I do not. Then I asked her if she knew why I am not teaching any more. She said "So that you could help me." Wow! She gets it. I asked her if she liked that I was home more. She replied in the affirmative. Then she went on to sing my praises. When she was done, you would have thought I should have won the mother of the year award. I was in shock and awe.
For many years it was not like this at all. To say that I had a strained relationship with my daughter would be putting it mildly. I know that many parents of kids with mental illnesses will tell you that they have a tenuous relationship with their child as well. If I am honest, when I was working, it was easier to work all day than to be home with Princess. I could ignore all of the issues at home while I was teaching. My workplace became an oasis of sorts.
I also knew that my husband had a very special bond with our daughter. Princess told me many times that she loved him more than she loved me. I was happy that my daughter had such a special daddy but was sad that Princess's relationship with me wasn't even close.
For six weeks in late 2012 Princess and I spent a lot of time together while she received outpatient treatment in a neighboring county. It was too far to drive back and forth every day so we stayed at a hotel during the week nights and drove home on the weekends. We spent a lot of 1:1 time together during that time. I believe that was when our relationship really began to heal.
As time has gone on and I am able to be more available to my daughter we have both learned to appreciate each other more. I have learned many things about my daughter. I learned that it is important that she knows that I am there when she gets off of the school van every day. It is vital that I am there to assist with her homework. It is paramount that I am able to have the time to email her teachers and staff members about concerns. It is significant that I have the flexibility to stay home with her if she is sick or did not get a good night's sleep.
Recently Princess had a bad case of the stomach flu. I was up from 12 a.m.- 6 a.m. with her. When I was teaching, I would have either been stressed about missing work the next day or woke my husband up to ask him to take a shift for a few hours. Since I am now home full time, I did not have those concerns.
I understand that not all parents of kids with Special Needs can stay home but for us it has proven to be highly effective. Another mom of a Special Needs kid put it this way "My child only has one childhood. Right now she needs me in it more."
There are many factors that play into why my relationship with my daughter has been mended but I believe the number one reason is just being able to be there more for her. For that I feel blessed and grateful that I listened to God when He told me to make Princess a priority.
Bloggy Moms
Tuesday, February 18, 2014
Sunday, February 16, 2014
A Reason for Hope
I have wanted to share all of our good news but wasn't sure how to go about it but finally am taking the plunge.
Please know this is my experience. All children are different and
respond to psych meds differently but since my daughter has done so amazingly
well on this new medication. I felt compelled to share about it with you.
I've blogged in the past a little about out journey so far. You can read more about it here .
In December of 2012 we started our first of many new normals but Princess was stable. Unfortunately the medication that made her stable also made her crave food especially carbs. She ballooned up to over 100 lbs by May of 2013. Her pdoc weaned her off of that med with the hopes of starting a new med soon. Well becasue of an insurance snafu we did not get to start my daughter on a new medication So last summer Princess was in and out of medical facilities over the course of two months trying to get her meds just right. She would get discharged and be home a few days then would end up having to go right back because she would become so unsafe. Some parents with children like mine have coined the term "Street and Treat." That was very true for us. For a while I felt like I was living in the movie "Groundhog Day." My husband and I were seriously considering a Residential Treatment Center because things had gotten so bad.
In September we were finally able to get Princess in a therapeutic day school that the public school agreed to pay for but she was still very sick.
In October when we were at our wit's end, our pdoc suggested we try this new med she had heard about at a conference that she recently attended. She said that it had been used to control behaviors in kids like mine. It had been used for a long time in Parkinson's patients but just recently in kids. With nothing to lose I agreed to try it. I was scared to death that this was not going to work and we would eventually end up having to place my child in an RTC in a few months. Well lo and behold it was the wonder drug.
I cannot begin to tell you what a difference this drug, Amantadine, has made in my daughter's life! She is like a different child. She can attend and focus. She her acts of aggression are considerably less frequent and shorter. Her executive functioning has improved dramatically. Her SPD issues are almost non existent. The change in my child is so dramatic that I cannot believe it is the same child. It is like her behaviors were getting in the way of us being able to see who she truly is inside.
Even when she was stable in 2012, she was nothing like what we are seeing now. Her teachers are noticing as well. I can honestly say that I am enjoying spending time with my child. I no longer dread when the next rage is coming.
Two additional benefits are that we have decreased her other meds significantly and she has lost all of the weight she put on. We were able to go off of one med and are dereasing another. It is the pdoc's hope that eventually Princess will only need to be on one or two meds in addition to Amantadine.
I'll end this by saying that if any of what I am saying sounds intriguing to you, I encourage you to ask your child's doctor about considering Amantadine for your child. I'm posting some links to some studies/ research about Amantadine if you are interested. Here's one. Here's another. The second link has the information about 1/2 to 2/3's of the way down the page. The facility is a highly respected residential treatment center in Texas.
We had almost lost all hope. We are beginning to dream again.
Never give up!
I've blogged in the past a little about out journey so far. You can read more about it here .
In December of 2012 we started our first of many new normals but Princess was stable. Unfortunately the medication that made her stable also made her crave food especially carbs. She ballooned up to over 100 lbs by May of 2013. Her pdoc weaned her off of that med with the hopes of starting a new med soon. Well becasue of an insurance snafu we did not get to start my daughter on a new medication So last summer Princess was in and out of medical facilities over the course of two months trying to get her meds just right. She would get discharged and be home a few days then would end up having to go right back because she would become so unsafe. Some parents with children like mine have coined the term "Street and Treat." That was very true for us. For a while I felt like I was living in the movie "Groundhog Day." My husband and I were seriously considering a Residential Treatment Center because things had gotten so bad.
In September we were finally able to get Princess in a therapeutic day school that the public school agreed to pay for but she was still very sick.
In October when we were at our wit's end, our pdoc suggested we try this new med she had heard about at a conference that she recently attended. She said that it had been used to control behaviors in kids like mine. It had been used for a long time in Parkinson's patients but just recently in kids. With nothing to lose I agreed to try it. I was scared to death that this was not going to work and we would eventually end up having to place my child in an RTC in a few months. Well lo and behold it was the wonder drug.
I cannot begin to tell you what a difference this drug, Amantadine, has made in my daughter's life! She is like a different child. She can attend and focus. She her acts of aggression are considerably less frequent and shorter. Her executive functioning has improved dramatically. Her SPD issues are almost non existent. The change in my child is so dramatic that I cannot believe it is the same child. It is like her behaviors were getting in the way of us being able to see who she truly is inside.
Even when she was stable in 2012, she was nothing like what we are seeing now. Her teachers are noticing as well. I can honestly say that I am enjoying spending time with my child. I no longer dread when the next rage is coming.
Two additional benefits are that we have decreased her other meds significantly and she has lost all of the weight she put on. We were able to go off of one med and are dereasing another. It is the pdoc's hope that eventually Princess will only need to be on one or two meds in addition to Amantadine.
I'll end this by saying that if any of what I am saying sounds intriguing to you, I encourage you to ask your child's doctor about considering Amantadine for your child. I'm posting some links to some studies/ research about Amantadine if you are interested. Here's one. Here's another. The second link has the information about 1/2 to 2/3's of the way down the page. The facility is a highly respected residential treatment center in Texas.
We had almost lost all hope. We are beginning to dream again.
Never give up!
Friday, January 17, 2014
Weight Issues
If you know me, you know that weight is something that I have struggled with all of my life. When my husband and I were dating, I had recently lost a significant amount of weight. One day my knight said "I will still love you even if you gain all of the weight back." Well that did it. From then on I was madly in love with this man who could have so much unconditional love for me.
Princess has struggled with her weight as well. Last year at this time Princess's weight had crept up to an unhealthy number. Her doctor knew that a certain medication was the culprit so we tried to limit carbs and provide more nutritious alternatives. This was to no avail. Her weight continued to climb. Finally in May her doctor took her off of that med.
What followed was the worst summer and early fall ever as we tried to find another medication to stabilize her moods.
Finally in October, her doctor decided to try something new that she had never tried but that several of her other colleagues had met with success. I was scared out of my wits but decided to take a leap of faith.
Right away we noticed big changes. Princess could pay attention. She seemed to have matured over night. She could sit still. She did not have so much extra energy. Best of all she was no longer aggressive. For us this has been a wonder drug.
The flip side of it, is that it has exaggerated Princess's food issues. Oh it was great when she first started to lose all of the extra weight. Of course my pocket book didn't like it. It was fun to see her slim down. That is until I started to see her ribs stick out. Even my husband noticed it.
So in late December I made an appointment with the pediatrician. We went in under the guise of having the doctor look at her chapped and bleeding hands. Then after the doctor gave us the name of an OTC cream and a prescription for another, I asked Princess to go to the waiting room while I talked to the doctor.
The doctor informed me that Princess was not in dire straights yet. According to her growth charts, my daughter, was in the 60th percentile. I was shocked to say the least. I thought she'd be more in the 30th percentile.
I asked for some advice as her other doctor wanted to put her back on the medication that had led to the weight gain in the first place. She suggested that we meet with a nutritionist that she would set us up with. She also recommended that we give Princess Pediasure 2-3 times a week at the end of the day if we felt that she wasn't consuming enough calories. She said that she and Princess's other doctor will continue to monitor her weight on a monthly basis.
In my opinion the weight loss is not only caused by this new medication but by at least two other factors. Princess dislikes the way many foods feel, smell and/ or taste. She even told me that she doesn't like the way sliced potatoes feel on her tongue. She will only eat grandma's mashed potatoes because they don't have any lumps. She also has food anxieties. She is afraid to try something new for fear of not liking it. These two factors really came to a head at a recent family gathering. When it came time for dinner at my cousin's house, Princess took one look at all of the food and became overwhelmed. I asked her what was wrong. She told me that she needed a "cool out." So we went into the living room where she informed me through tears that there was nothing there that she liked. I know from years of dealing with this that I would get no where if I just told her to try. So I asked my cousin's son for the makings for a PBJ. He happily obliged. So while the rest of us ate yummy prime rib and scalloped potatoes. My child dined on a PBJ and a banana. I am so thankful that no one said a word of criticism.
I have learned that for the time being when we are dining out whether it be at a restaurant or someone else's house, I will be bringing an emergency meal for Princess just in case.
I do worry that these eating habits could develop into an eating disorder as I see some of the early signs of this.
Like my husband modeled for me me, I will love my precious child no matter what her size. I just want her to be a healthy weight.
I would ask for your continued prayers as we battle this. We are so thankful that Princess is doing so well in so many areas but know that she continues to struggle in other areas. Thank you for your support and love.
Princess has struggled with her weight as well. Last year at this time Princess's weight had crept up to an unhealthy number. Her doctor knew that a certain medication was the culprit so we tried to limit carbs and provide more nutritious alternatives. This was to no avail. Her weight continued to climb. Finally in May her doctor took her off of that med.
What followed was the worst summer and early fall ever as we tried to find another medication to stabilize her moods.
Finally in October, her doctor decided to try something new that she had never tried but that several of her other colleagues had met with success. I was scared out of my wits but decided to take a leap of faith.
Right away we noticed big changes. Princess could pay attention. She seemed to have matured over night. She could sit still. She did not have so much extra energy. Best of all she was no longer aggressive. For us this has been a wonder drug.
The flip side of it, is that it has exaggerated Princess's food issues. Oh it was great when she first started to lose all of the extra weight. Of course my pocket book didn't like it. It was fun to see her slim down. That is until I started to see her ribs stick out. Even my husband noticed it.
So in late December I made an appointment with the pediatrician. We went in under the guise of having the doctor look at her chapped and bleeding hands. Then after the doctor gave us the name of an OTC cream and a prescription for another, I asked Princess to go to the waiting room while I talked to the doctor.
The doctor informed me that Princess was not in dire straights yet. According to her growth charts, my daughter, was in the 60th percentile. I was shocked to say the least. I thought she'd be more in the 30th percentile.
I asked for some advice as her other doctor wanted to put her back on the medication that had led to the weight gain in the first place. She suggested that we meet with a nutritionist that she would set us up with. She also recommended that we give Princess Pediasure 2-3 times a week at the end of the day if we felt that she wasn't consuming enough calories. She said that she and Princess's other doctor will continue to monitor her weight on a monthly basis.
In my opinion the weight loss is not only caused by this new medication but by at least two other factors. Princess dislikes the way many foods feel, smell and/ or taste. She even told me that she doesn't like the way sliced potatoes feel on her tongue. She will only eat grandma's mashed potatoes because they don't have any lumps. She also has food anxieties. She is afraid to try something new for fear of not liking it. These two factors really came to a head at a recent family gathering. When it came time for dinner at my cousin's house, Princess took one look at all of the food and became overwhelmed. I asked her what was wrong. She told me that she needed a "cool out." So we went into the living room where she informed me through tears that there was nothing there that she liked. I know from years of dealing with this that I would get no where if I just told her to try. So I asked my cousin's son for the makings for a PBJ. He happily obliged. So while the rest of us ate yummy prime rib and scalloped potatoes. My child dined on a PBJ and a banana. I am so thankful that no one said a word of criticism.
I have learned that for the time being when we are dining out whether it be at a restaurant or someone else's house, I will be bringing an emergency meal for Princess just in case.
I do worry that these eating habits could develop into an eating disorder as I see some of the early signs of this.
Like my husband modeled for me me, I will love my precious child no matter what her size. I just want her to be a healthy weight.
I would ask for your continued prayers as we battle this. We are so thankful that Princess is doing so well in so many areas but know that she continues to struggle in other areas. Thank you for your support and love.
Monday, December 30, 2013
A Day of Firsts
Wow today Princess made some amazing achievements! For most NT (Neuro-typical) kids these might be no big deal but for my sensory challenged, focus challenged drama queen they are huge.
The day started out innocently enough. We were invited to a birthday party in the morning, had plans to go visit the doctor for a flu shot (Only I didn't tell Princess about this until I absolutely had to.) and were going to end the afternoon with a visit to the tdoc (therapist).
On the way to the party, the thought occurred to me that I could possibly leave Princess at the party for an hour. I had an errand to run at the pharmacy. (In case you're wondering, they do know us by name.- I'll write more about this godsend in a future post.) During a break between songs on the radio, I asked Princess what she thought about being left at the party for about an hour. She responded affirmatively. We talked about what to do if she had any problems. She knows the hostess very well and had been to several of her child's parties before. A few minutes after arriving at the party, I politely excused myself but not before making sure that someone had my cell phone number in case an emergency arose. Upon my return an hour later, I found Princess smiling and happily engaged in a friendly game of Capture the Flag. It was brought to my attention that my daughter had a mild injury while I was gone but chose to keep playing even though there were no band aids. Yippee! Score one point for attending a party without mommy or daddy there the whole time. Maybe next time, I can leave her the whole time.
Near the end of the party, I told Princess that she was going to get a flu shot today. I told her that if she did a good job that I would take her to get ice cream. In the past we have had major meltdowns over blood draws and injections. I can recall at least twice where I had to physically hold her with the assistance of 3-4 medical professionals. Today Princess asked me not to discuss the shot with her as it made her nervous. When we got to the doctor's office, my daughter did well until it was time for the actual shot. Then she covered her arms and hid her head. With a little coaxing from me she finally gave the nurse access to her arm. I encouraged her to look at me, not the needle. That (and a lot of prayer on both our parts) seemed to do the trick. For the first time ever she did not cry while getting vaccinated. Yippee again! Score another point for bravery at the doctor's office.
After a visit to the local ice cream shop, we went to the tdoc's for her weekly visit. We finally headed home for what I thought was going to be a relaxing evening. Princess has other plans. I had reminded her that she needed to pick up all of the clothes on the floor of her bedroom before starting any new activity. Typically she will just stuff the clothes in either the hamper or back in the drawer. Not today. Today she decided to go through her clothes. A purging of sorts if you will. At the end she had more room for her new clothes from Christmas. She also folded up her clothes neatly before gently placing them in the drawers. What's pretty incredible here is that I usually sort through her clothes when she is not home because she has difficulty parting with things. We can end up witnessing a meltdown or she and I can have an argument. Either way it is not a pretty thing. The fact that Princess was willing to go through her things on her own is a huge step for her. Yippee times three for this feat!
As I reflect upon today, I am reminded that a lot of people helped make today's successes happen. I am grateful for our village whether they be doctors, therapists, friends or family. We are blessed that so many individuals are uphold our little girl in prayer as well. These accomplishments might be short lived (and that is OK). For today I am proud and grateful.
Just a side note: If my memory serves me correct, this is the first children's party that Princess has been able to attend much less been invited to for a variety of reasons. You can read more about my thoughts on birthday parties here
The day started out innocently enough. We were invited to a birthday party in the morning, had plans to go visit the doctor for a flu shot (Only I didn't tell Princess about this until I absolutely had to.) and were going to end the afternoon with a visit to the tdoc (therapist).
On the way to the party, the thought occurred to me that I could possibly leave Princess at the party for an hour. I had an errand to run at the pharmacy. (In case you're wondering, they do know us by name.- I'll write more about this godsend in a future post.) During a break between songs on the radio, I asked Princess what she thought about being left at the party for about an hour. She responded affirmatively. We talked about what to do if she had any problems. She knows the hostess very well and had been to several of her child's parties before. A few minutes after arriving at the party, I politely excused myself but not before making sure that someone had my cell phone number in case an emergency arose. Upon my return an hour later, I found Princess smiling and happily engaged in a friendly game of Capture the Flag. It was brought to my attention that my daughter had a mild injury while I was gone but chose to keep playing even though there were no band aids. Yippee! Score one point for attending a party without mommy or daddy there the whole time. Maybe next time, I can leave her the whole time.
Near the end of the party, I told Princess that she was going to get a flu shot today. I told her that if she did a good job that I would take her to get ice cream. In the past we have had major meltdowns over blood draws and injections. I can recall at least twice where I had to physically hold her with the assistance of 3-4 medical professionals. Today Princess asked me not to discuss the shot with her as it made her nervous. When we got to the doctor's office, my daughter did well until it was time for the actual shot. Then she covered her arms and hid her head. With a little coaxing from me she finally gave the nurse access to her arm. I encouraged her to look at me, not the needle. That (and a lot of prayer on both our parts) seemed to do the trick. For the first time ever she did not cry while getting vaccinated. Yippee again! Score another point for bravery at the doctor's office.
After a visit to the local ice cream shop, we went to the tdoc's for her weekly visit. We finally headed home for what I thought was going to be a relaxing evening. Princess has other plans. I had reminded her that she needed to pick up all of the clothes on the floor of her bedroom before starting any new activity. Typically she will just stuff the clothes in either the hamper or back in the drawer. Not today. Today she decided to go through her clothes. A purging of sorts if you will. At the end she had more room for her new clothes from Christmas. She also folded up her clothes neatly before gently placing them in the drawers. What's pretty incredible here is that I usually sort through her clothes when she is not home because she has difficulty parting with things. We can end up witnessing a meltdown or she and I can have an argument. Either way it is not a pretty thing. The fact that Princess was willing to go through her things on her own is a huge step for her. Yippee times three for this feat!
As I reflect upon today, I am reminded that a lot of people helped make today's successes happen. I am grateful for our village whether they be doctors, therapists, friends or family. We are blessed that so many individuals are uphold our little girl in prayer as well. These accomplishments might be short lived (and that is OK). For today I am proud and grateful.
Just a side note: If my memory serves me correct, this is the first children's party that Princess has been able to attend much less been invited to for a variety of reasons. You can read more about my thoughts on birthday parties here
Tuesday, December 17, 2013
Homework Happiness
Yep you read that right! Homework happiness. Today for the first time
EVER Princess completed her homework packet in one day. Well all but
the Spelling pretest but that is because I insisted that she do that on
Thursday. (I know I'm a big ole meanie.)
In the past homework was one of the biggest battles that we had with Princess. Tables were scratched, chairs were thrown, pencils were snapped. Everything that you can imagine happening, happened. We had lots of things happen during homework that one would not imagine as well. None of it was good.
It finally got to the point where I would ask Princess if she wanted to do homework. If she said no, I wrote " Refused to do homework." on her homework sheet for the day. This was not a battle that I was willing to fight on a daily basis. I knew that I would lose. Every. Single. Time.
Even though we asked for the school to stop assigning homework to Princess. They told us that she needed it. It would help her practice the things that she learned in class. They did agree to modify the amount of work but Princess still refused to complete her homework almost daily.
On the rare day that Princess was in the mood to do her homework, she lacked focus and was distracted by everything including the lint in the air. What would normally take 5 minutes to complete, took Princess at least 30 minutes.
Now that everything is going so well for Princess and she is in a period of incredible stability, she almost begs to do homework daily. She has become the "self-starter" that she never was. I can actually be doing something in another part of the house while she completes her homework.
We are still taking this stability thing a day at a time but I am savoring every moment of every minute of every hour. I do hope it continues for a very long time.
I am trying not to worry when the stability will end. Right now I am trying to be "in the moment." To celebrate every victory no matter how big or small. For today it was homework happiness.
By the way, I wanted you to know that I have a Facebook page for this blog. Here is the link: Raising a Drama Queen on Facebook. I'm posting little nuggets there that I don't always post here. I am also finding it is a good way for me to get feedback from others. Check it out, then "Like" it and share it on your Facebook wall. Thanks for your support.
In the past homework was one of the biggest battles that we had with Princess. Tables were scratched, chairs were thrown, pencils were snapped. Everything that you can imagine happening, happened. We had lots of things happen during homework that one would not imagine as well. None of it was good.
It finally got to the point where I would ask Princess if she wanted to do homework. If she said no, I wrote " Refused to do homework." on her homework sheet for the day. This was not a battle that I was willing to fight on a daily basis. I knew that I would lose. Every. Single. Time.
Even though we asked for the school to stop assigning homework to Princess. They told us that she needed it. It would help her practice the things that she learned in class. They did agree to modify the amount of work but Princess still refused to complete her homework almost daily.
On the rare day that Princess was in the mood to do her homework, she lacked focus and was distracted by everything including the lint in the air. What would normally take 5 minutes to complete, took Princess at least 30 minutes.
Now that everything is going so well for Princess and she is in a period of incredible stability, she almost begs to do homework daily. She has become the "self-starter" that she never was. I can actually be doing something in another part of the house while she completes her homework.
We are still taking this stability thing a day at a time but I am savoring every moment of every minute of every hour. I do hope it continues for a very long time.
I am trying not to worry when the stability will end. Right now I am trying to be "in the moment." To celebrate every victory no matter how big or small. For today it was homework happiness.
By the way, I wanted you to know that I have a Facebook page for this blog. Here is the link: Raising a Drama Queen on Facebook. I'm posting little nuggets there that I don't always post here. I am also finding it is a good way for me to get feedback from others. Check it out, then "Like" it and share it on your Facebook wall. Thanks for your support.
Monday, December 9, 2013
Musings From My Little Philosopher
"Stable is a place where horses live." I have seen this quote on a tagline of another mom of a special needs kiddo. Every time I read it, it makes me sad. I am sad because it means that this parent has given up hope that their child can ever be stable. I refuse to do that. I have seen times where my child is stable so I know it is possible.
I have to admit that we had a pretty yucky summer and early fall. There were times when it was pretty awful but I never gave up hope that one day my child would be stable. I somehow knew that with the right puzzle pieces (meds, school, therapy etc.) stability was possible.
Right now we are seeing more stability in Princess than we have ever seen. It really is a lovely thing. I don't know how long it will last so I am enjoying every moment, every hour, every day that Princess has it.
I asked her on Saturday why she thinks she is doing so well. Her response blew me away. For a 9 year old to understand this is remarkable. Here's what she said. "I think it is everyone being so positive with me. I have a lot of help. The pills I am taking help me. Dr. Godsend, my feelings doctor and Mr. Color are all there to help me." Dr. Godsend (not her real name) is her psychiatrist. The feelings doctor, as you probably guessed by now, is her therapist. Mr. Color is a counselor at school. Yep she got it right all of those things are part of the puzzle.
Then today I got this little nugget. Princess and I were in the car on the way home from her appointment. I don't even remember what we were talking about but all of a sudden she said, "I know why I was put here (on this planet.)" I asked her why. This is what she said, "I was put here to cheer people up, to pray for those who are sick and hurting. When I grow up, I want to be rich so that I can give to others who have no toys or food or homes. I want to make good choices from now on. I am so proud of myself." I almost had to stop the car because I was crying tears of joy. Then she said,
"Thank you for helping me so much." Wow! I do not make this stuff up. Incredible!
Like I said before we don't know how long this stability will last but we are definitely grateful for it.
This is what stability looks like. I don't care if my child is famous, gets all A's or is the star athlete. To me if she is stable and she has God's heart, that is what is most important.
I am here to say that stable is not just a place where horses live. I've seen it in my child and it is pretty amazing.
I have to admit that we had a pretty yucky summer and early fall. There were times when it was pretty awful but I never gave up hope that one day my child would be stable. I somehow knew that with the right puzzle pieces (meds, school, therapy etc.) stability was possible.
Right now we are seeing more stability in Princess than we have ever seen. It really is a lovely thing. I don't know how long it will last so I am enjoying every moment, every hour, every day that Princess has it.
I asked her on Saturday why she thinks she is doing so well. Her response blew me away. For a 9 year old to understand this is remarkable. Here's what she said. "I think it is everyone being so positive with me. I have a lot of help. The pills I am taking help me. Dr. Godsend, my feelings doctor and Mr. Color are all there to help me." Dr. Godsend (not her real name) is her psychiatrist. The feelings doctor, as you probably guessed by now, is her therapist. Mr. Color is a counselor at school. Yep she got it right all of those things are part of the puzzle.
Then today I got this little nugget. Princess and I were in the car on the way home from her appointment. I don't even remember what we were talking about but all of a sudden she said, "I know why I was put here (on this planet.)" I asked her why. This is what she said, "I was put here to cheer people up, to pray for those who are sick and hurting. When I grow up, I want to be rich so that I can give to others who have no toys or food or homes. I want to make good choices from now on. I am so proud of myself." I almost had to stop the car because I was crying tears of joy. Then she said,
"Thank you for helping me so much." Wow! I do not make this stuff up. Incredible!
Like I said before we don't know how long this stability will last but we are definitely grateful for it.
This is what stability looks like. I don't care if my child is famous, gets all A's or is the star athlete. To me if she is stable and she has God's heart, that is what is most important.
I am here to say that stable is not just a place where horses live. I've seen it in my child and it is pretty amazing.
Monday, December 2, 2013
Tough Choices
I have a confession to make. I am not perfect. I am sometimes selfish. Yes even when it comes to my own daughter's needs. You see sometimes things are going so well that I don't want to risk the possibility of things going south.
Today I had to make a tough choice. Some might say I had to put my big girl panties on.
For a few weeks now I have been putting off this decision. Sort of procrastinating if you will. I had decided that we had had enough changes that our family and Princess in particular would do well without this possible change.
Like all procrastinators my hesitancy came out of fear. I was afraid of what I would hear. Afraid of what the doctor would say. On the other hand if I put it off for much longer, I risked putting my daughter's well being in danger.
What I had noticed, after it was brought to my attention, was that my daughter's hands were shaking. I feared that it meant that the new medication that had brought so much stability to her, and in turn our family, was causing this.
After Princess went to school today and saying a little prayer, I called the doctor to get her input on this. This particular doctor has her messages go to voice mail but she is really good about returning calls in a timely manner. True to her character she called me back in about one hour. I explained the problem to her. She told me that it probably wasn't the new medication but another that Princess has been on for several years. With this particular drug we recently found the perfect dose. At a lower dose Princess's moods seem to not be as stable.
The doctor told me that we would need to decrease the dosage of this tried and true drug. So beginning tonight we did just that.
The doctor is hopeful that with the newer medication, we should not see any changes with the decrease in the other drug other than the gradual lessening of the side affect. This mom, however, is worried. We'll know in the next day or two what our next steps need to be.
In the meantime I know that I made the right choice by telling the doctor because I was told that the longer we allowed the tremors to continue, the harder they would be to reverse them.
Even though we don't know what the near future holds, I can be confident in knowing that I made the right choice for my daughter by doing what needed to be done. Procrastination did not win here.
Have you ever let your fears win?
Today I had to make a tough choice. Some might say I had to put my big girl panties on.
For a few weeks now I have been putting off this decision. Sort of procrastinating if you will. I had decided that we had had enough changes that our family and Princess in particular would do well without this possible change.
Like all procrastinators my hesitancy came out of fear. I was afraid of what I would hear. Afraid of what the doctor would say. On the other hand if I put it off for much longer, I risked putting my daughter's well being in danger.
What I had noticed, after it was brought to my attention, was that my daughter's hands were shaking. I feared that it meant that the new medication that had brought so much stability to her, and in turn our family, was causing this.
After Princess went to school today and saying a little prayer, I called the doctor to get her input on this. This particular doctor has her messages go to voice mail but she is really good about returning calls in a timely manner. True to her character she called me back in about one hour. I explained the problem to her. She told me that it probably wasn't the new medication but another that Princess has been on for several years. With this particular drug we recently found the perfect dose. At a lower dose Princess's moods seem to not be as stable.
The doctor told me that we would need to decrease the dosage of this tried and true drug. So beginning tonight we did just that.
The doctor is hopeful that with the newer medication, we should not see any changes with the decrease in the other drug other than the gradual lessening of the side affect. This mom, however, is worried. We'll know in the next day or two what our next steps need to be.
In the meantime I know that I made the right choice by telling the doctor because I was told that the longer we allowed the tremors to continue, the harder they would be to reverse them.
Even though we don't know what the near future holds, I can be confident in knowing that I made the right choice for my daughter by doing what needed to be done. Procrastination did not win here.
Have you ever let your fears win?
Subscribe to:
Posts (Atom)