Tonight I was lucky to have a conversation with another PI Mom. Her son has a much more serious PI and is a lot sicker. I feel grateful that she has taken the time to share her wisdom on several occasions with me over the past year. Our conversation has again reminded me of how many blessings I have in my life.
I know that the past few weeks have been extremely difficult. Emotionally it has been a roller coaster for Maggie and me. I have had moments of sadness, anger, acceptance and plain out confusion. It has also deepened my faith, strengthened my relationship with my husband, helped me feel more confident as a Mom and advocate and showed me again what an amazing daughter I have.
I was reminded of all of these things plus a couple of more. It is mind-boggling that my kids were diagnosed at such an early age. The average time it takes for someone to be diagnosed with a PI is 12.4 years. Plus, to have a doctor like Dr. T - extremely lucky. The Mom I was talking to also takes her kids to Dr. T. I am not the only Mom who sings his praises and hates when he is on vacation. Thank God for a doctor who is competent and invested in my kids.
So many things to be grateful for even when the journey is a bit bumpy. God is present in all our moments and struggles. I don't know what His reasoning but I know that it is all as it should be. God's presence calms me, soothes my fears and helps me to walk through each day with strength and hope. In the end I am most grateful for having a faith and love of God to hold on to when the water gets rocky. Without His love, I would be lost in a land of dark and sadness. Again, thanks and praise for God.
Tuesday, May 31, 2011
Monday, May 30, 2011
Definition
chron·ic/ˈkränik/Adjective
1. (of an illness) Persisting for a long time or constantly recurring.
2. (of a person) Having such an illness
Above is the word I have been struggling with all day. One simple seven letter word. That word has become such a part of our life that I utter with ease and no thought. "Maggie and Ricky's primary immune deficiency is a chronic disease" So what does that really mean? I looked the definition up on google even though I already "knew" the meaning. Yup it is pretty right on about immune deficiencies. They do persist with constant infections that can last for weeks or even months.
So the question is not how to define the word but how to deal with being the second definition. Actually how to parent a child who fits the second definition listed above. The doctors have told me Maggie will probably feel sick for the time it takes them to decide what to do to help her. It could be a week, a couple weeks or even a month. Her pediatrician, who also has a pi, has even expressed the notion that she may feel sick a lot in her life.
This will be the challenge for Maggie and me. To learn to co-exist with this disease and live life on life terms is one of the goals. There will be many moments, possibly days, where she feels yucky and has to carry out her to-do-list. How she feels will be secondary to what she needs to accomplish. I already think she does this pretty well. I need to take a lesson from her on this.
The next step is to learn how to walk the line between what Maggie carries on with or when it is serious enough to warrant slowing down. That will be a harder task until she is older and better able to communicate with me. For now I have to listen to her concerns, observe her behavior and communicate with her doctors. Then I have to trust and listen to them.
Today we had to bow out of the family picnic. Someone had a new, fresh cold and I didn't want to risk complicating the situation with another virus. Then Maggie woke up with a fever and still dragging from our Saturday fun. I was disappointed and knew she would have loved to go. I had to err on the side of caution this time. Next time I may decide the social is more important. Either way I don't think there was a right or wrong answer.
The chronic part of the disease, the decision part of the disease and the trying to maintain balance part overwhelmed me today. I think that is all natural and part of this roller coaster of pi. What I had to do was talk about it and cry a bit. After a little cry I counted my blessings and reminded myself to stay in the moment. Tomorrow is another day and it will bring more choices and decisions. But that is tomorrow and for now I will just stay where I am!
1. (of an illness) Persisting for a long time or constantly recurring.
2. (of a person) Having such an illness
Above is the word I have been struggling with all day. One simple seven letter word. That word has become such a part of our life that I utter with ease and no thought. "Maggie and Ricky's primary immune deficiency is a chronic disease" So what does that really mean? I looked the definition up on google even though I already "knew" the meaning. Yup it is pretty right on about immune deficiencies. They do persist with constant infections that can last for weeks or even months.
So the question is not how to define the word but how to deal with being the second definition. Actually how to parent a child who fits the second definition listed above. The doctors have told me Maggie will probably feel sick for the time it takes them to decide what to do to help her. It could be a week, a couple weeks or even a month. Her pediatrician, who also has a pi, has even expressed the notion that she may feel sick a lot in her life.
This will be the challenge for Maggie and me. To learn to co-exist with this disease and live life on life terms is one of the goals. There will be many moments, possibly days, where she feels yucky and has to carry out her to-do-list. How she feels will be secondary to what she needs to accomplish. I already think she does this pretty well. I need to take a lesson from her on this.
The next step is to learn how to walk the line between what Maggie carries on with or when it is serious enough to warrant slowing down. That will be a harder task until she is older and better able to communicate with me. For now I have to listen to her concerns, observe her behavior and communicate with her doctors. Then I have to trust and listen to them.
Today we had to bow out of the family picnic. Someone had a new, fresh cold and I didn't want to risk complicating the situation with another virus. Then Maggie woke up with a fever and still dragging from our Saturday fun. I was disappointed and knew she would have loved to go. I had to err on the side of caution this time. Next time I may decide the social is more important. Either way I don't think there was a right or wrong answer.
The chronic part of the disease, the decision part of the disease and the trying to maintain balance part overwhelmed me today. I think that is all natural and part of this roller coaster of pi. What I had to do was talk about it and cry a bit. After a little cry I counted my blessings and reminded myself to stay in the moment. Tomorrow is another day and it will bring more choices and decisions. But that is tomorrow and for now I will just stay where I am!
Saturday, May 28, 2011
The Quiet Presence
A day at the beach flying kites was the perfect way to end a hectic week. Rick asked Maggie this morning what she would like to do. Enthusiastically she asked if we could go to the "Big Lake". We packed the kites, some snacks and headed out to the beach. It was just the right temperature and even though it was overcast, it felt like the perfect beach day.
Throughout this whole medical crisis with Maggie I have felt this quiet presence. Even in my more desperate, angry or fearful moments there has always been this stillness in my heart. I know that it was God guiding me through each feeling and moment. My faith has deepened the past month in a way I never thought possible. I have never been alone and was always able to reach an inner strength when I needed it.
Today as I stood on the beach and watched as my family flew kites I felt this presence. It was such a strong peace that came over me. I felt as if no matter what happened in our lives, we would be okay. There was a strength and a love that filled my heart and soul. I had no need for words or even tears. All was as it should be. The moment was only a few seconds and ended as Ricky ran up to hug me. But in those few seconds I knew it was God. God was sending a message of love and reassurance. I am steadfast in the knowledge of how much He loves not only me, my husband (although he needs a reintroduction) but my children. As I looked at Maggie and Ricky running around playing chase with such joy I knew that God will always hold them close. And as long as they are in His hands they are safe and loved.
Today was perfect and not because Rick and I didn't snip at each other or the kids didn't whine. It was perfect because I was graced enough to feel the strength and love of God. It was a moment but a moment I hope to hold onto forever. And somehow this moment reminded me that God is not only in those quiet moments but He is in the love Rick and I share. He is in the love we have for our children. And He is in our children's laughter and joy. God celebrates and rejoices everyday in my family. I just need to stop, take a breath and count the ways.
Throughout this whole medical crisis with Maggie I have felt this quiet presence. Even in my more desperate, angry or fearful moments there has always been this stillness in my heart. I know that it was God guiding me through each feeling and moment. My faith has deepened the past month in a way I never thought possible. I have never been alone and was always able to reach an inner strength when I needed it.
Today as I stood on the beach and watched as my family flew kites I felt this presence. It was such a strong peace that came over me. I felt as if no matter what happened in our lives, we would be okay. There was a strength and a love that filled my heart and soul. I had no need for words or even tears. All was as it should be. The moment was only a few seconds and ended as Ricky ran up to hug me. But in those few seconds I knew it was God. God was sending a message of love and reassurance. I am steadfast in the knowledge of how much He loves not only me, my husband (although he needs a reintroduction) but my children. As I looked at Maggie and Ricky running around playing chase with such joy I knew that God will always hold them close. And as long as they are in His hands they are safe and loved.
Today was perfect and not because Rick and I didn't snip at each other or the kids didn't whine. It was perfect because I was graced enough to feel the strength and love of God. It was a moment but a moment I hope to hold onto forever. And somehow this moment reminded me that God is not only in those quiet moments but He is in the love Rick and I share. He is in the love we have for our children. And He is in our children's laughter and joy. God celebrates and rejoices everyday in my family. I just need to stop, take a breath and count the ways.
Friday, May 27, 2011
A Weight is Lifted
Today it feels as if a weight has been lifted right off my shoulders. Maggie and I went to see Dr. T this morning to finish up the crazy week of medical appointments. We talked to him about the 1st and 2nd ENT appointments and I asked him some clarifications questions. I wanted to know about where she is immune wise and some more information on this recent infection.
Dr. T's feeling is her status hasn't changed on her immune deficiency. He did take blood a month early to make sure her IgG numbers are where he wants them. The only thing he is somewhat concerned about is if they have dropped. If they have we re-immunize her again. On the infection he said the big concern is her drug allergies. The infection was normal for a kid with Selective IgA Deficiency. The problem is he can't treat her how he would usually treat a patient with that infection. Her allergies limit the antibiotics that can be used. This makes it hard to get rid of the infection anywhere it is. If Ricks had the same infection, this whole thing would be a complete different story.
I have complete confidence in Dr. T and now we have a complete medical team to deal with the concerns at hand. Dr. Arnold has worked with Dr. T before on patients with immune deficiencies. They will consult together and decide the best way to treat the infection at hand. Also, they will discuss the long term concerns with the antibiotics/infections. The stress of having to manage different doctors is gone because they will communicate and I won't have to be the middle man.
It is stinky that Mags still doesn't feel well. It could take 2 to 3 weeks for them to come to some conclusion because Dr. T also wants us to pursue the migraine angle. He is going to get us into the headache doctor within the next 2 weeks. He wants to rule that out for diagnosis purposes. So we may not come to a resolution or fix for what ails Mags until end of June beginning of July. I feel bad for her and that this is becoming her "normal". She is starting to just accept how she feels and lives her life. It is good but a bit sad for her Momma.
The positives is that she is still a happy and active kid. There are so many mothers who have sick children who are not able to run and swing. They have to sit by their child's bedside and pray, not for a resolution, but a miracle. I am aware deep into my soul that I am so blessed. This may seem like a cross to bear sometimes but it holds its blessings. It tests my faith and strengthens it all at the same time. I am not the same Mom who walked into this crisis a month ago. I am better and stronger. And my girl has shown her own amazing strength and faith. I don't always know the reason or the plan but I know that God's love and strength can bring us through anything. I copied this saying off of facebook a little while ago and it says it all for me tonight:
We may not know what tomorrow holds,
but we know that God holds all of our tomorrows
and that is enough.
(When God Meets Cancer - Lynn Eib)
Dr. T's feeling is her status hasn't changed on her immune deficiency. He did take blood a month early to make sure her IgG numbers are where he wants them. The only thing he is somewhat concerned about is if they have dropped. If they have we re-immunize her again. On the infection he said the big concern is her drug allergies. The infection was normal for a kid with Selective IgA Deficiency. The problem is he can't treat her how he would usually treat a patient with that infection. Her allergies limit the antibiotics that can be used. This makes it hard to get rid of the infection anywhere it is. If Ricks had the same infection, this whole thing would be a complete different story.
I have complete confidence in Dr. T and now we have a complete medical team to deal with the concerns at hand. Dr. Arnold has worked with Dr. T before on patients with immune deficiencies. They will consult together and decide the best way to treat the infection at hand. Also, they will discuss the long term concerns with the antibiotics/infections. The stress of having to manage different doctors is gone because they will communicate and I won't have to be the middle man.
It is stinky that Mags still doesn't feel well. It could take 2 to 3 weeks for them to come to some conclusion because Dr. T also wants us to pursue the migraine angle. He is going to get us into the headache doctor within the next 2 weeks. He wants to rule that out for diagnosis purposes. So we may not come to a resolution or fix for what ails Mags until end of June beginning of July. I feel bad for her and that this is becoming her "normal". She is starting to just accept how she feels and lives her life. It is good but a bit sad for her Momma.
The positives is that she is still a happy and active kid. There are so many mothers who have sick children who are not able to run and swing. They have to sit by their child's bedside and pray, not for a resolution, but a miracle. I am aware deep into my soul that I am so blessed. This may seem like a cross to bear sometimes but it holds its blessings. It tests my faith and strengthens it all at the same time. I am not the same Mom who walked into this crisis a month ago. I am better and stronger. And my girl has shown her own amazing strength and faith. I don't always know the reason or the plan but I know that God's love and strength can bring us through anything. I copied this saying off of facebook a little while ago and it says it all for me tonight:
We may not know what tomorrow holds,
but we know that God holds all of our tomorrows
and that is enough.
(When God Meets Cancer - Lynn Eib)
Thursday, May 26, 2011
Answered Prayers
I have spent a lot of time praying the last 24 hours for a 2nd opinion ENT who would listen and communicate well. Today Maggie had her appointment and after an hour wait we finally saw the doctor. His name is Dr. Arnold and he was pretty good. He came in and talked with Maggie directly (something Dr. Sprecher never did). I started with the immune deficiency and he had lots of questions and listened to my answers. After reviewing my "list" or "timeline" I had made he examined Maggie. Finally, he said that with her immune issues and her antibiotic concerns an aggressive approach might be the way to go. First he wants to touch base with Dr. T.
AMEN and ALLELUIA!!!!!!!!!!!! A doctor who was willing to discuss and explain what is happening with my baby. And we get the bonus of he is going to consult with the person who knows the most about what is going on with her. This is not a decision made from a 15 minute exam and ct scan. It is a more well-rounded diagnosis and consult. I now feel a bit grateful that our appointment with Dr. Sprecher went so badly because we know have a team player joining Maggie's medical team (hopefully).
I am exhausted after the week's ENT journey but I think we are in the right spot. I don't know the outcome or what the whole process will be. I do know that I just have to do the next right thing and hand it over. It is out of my hands now and we just have to wait to hear. Dr. Arnold will contact us sometime next week. I have an appointment with Dr. T tomorrow for Maggie. It looks like it will be just to fill him in on the change and review with him where Maggie is. I feel like this could be a long journey so I will pray for continued patience and strength. And I think I will add a prayer for a pep up to my sense of humor : )
AMEN and ALLELUIA!!!!!!!!!!!! A doctor who was willing to discuss and explain what is happening with my baby. And we get the bonus of he is going to consult with the person who knows the most about what is going on with her. This is not a decision made from a 15 minute exam and ct scan. It is a more well-rounded diagnosis and consult. I now feel a bit grateful that our appointment with Dr. Sprecher went so badly because we know have a team player joining Maggie's medical team (hopefully).
I am exhausted after the week's ENT journey but I think we are in the right spot. I don't know the outcome or what the whole process will be. I do know that I just have to do the next right thing and hand it over. It is out of my hands now and we just have to wait to hear. Dr. Arnold will contact us sometime next week. I have an appointment with Dr. T tomorrow for Maggie. It looks like it will be just to fill him in on the change and review with him where Maggie is. I feel like this could be a long journey so I will pray for continued patience and strength. And I think I will add a prayer for a pep up to my sense of humor : )
Wednesday, May 25, 2011
God's Placement
I am still processing the happenings of the last couple of days. The anger and upset have dissipated. Now I am left with the reason and questions. I realize that the actual "plan" of the ENT may not be to bad. It is a starting point and we don't want to jump to the last resort. Surgery on Maggie's sinus is a pretty invasive procedure so taking a couple steps before hand is not really a bad idea. Just not with the original ENT!
This afternoon I had a chance to speak with Dr. Borus (Maggie's pediatrician). He spent over a half hour. He offered his opinion and support. During the conversation he helped me sort through some of the information and pinpoint the exact questions that I have. His recommendation was a 2nd opinion and certainly a meeting with Dr. T. So we have an appointment with another ENT tomorrow.
After my conversation with Dr. Borus I felt so much better. You know it is weird because he wasn't even supposed to be her pediatrician. I had talked to another doctor in the practice and she was supposed to be Maggie's doc. The day Maggie was born Dr. Borus was on rounds. He just happened to be there and was the doctor who checked her out. Again, when I struggled as a new Mom, he helped guide me through. We have been through a lot in Maggie's few short years.
We struggled with the decision to change doctors last spring when Maggie was having such trouble. We didn't and continued to work through things with him on our team. He apologized and told me that Maggie has changed the way he treats his patients. In the end, we are lucky to have him as part of the medical team that takes care of both of my children. I have great faith and belief that this man was put in our life to help us walk this journey. God has a way of sending angels to guide us and protect us. Dr. Borus has been that for us many times. I am sending many prayers of thanks since early this afternoon.
This afternoon I had a chance to speak with Dr. Borus (Maggie's pediatrician). He spent over a half hour. He offered his opinion and support. During the conversation he helped me sort through some of the information and pinpoint the exact questions that I have. His recommendation was a 2nd opinion and certainly a meeting with Dr. T. So we have an appointment with another ENT tomorrow.
After my conversation with Dr. Borus I felt so much better. You know it is weird because he wasn't even supposed to be her pediatrician. I had talked to another doctor in the practice and she was supposed to be Maggie's doc. The day Maggie was born Dr. Borus was on rounds. He just happened to be there and was the doctor who checked her out. Again, when I struggled as a new Mom, he helped guide me through. We have been through a lot in Maggie's few short years.
We struggled with the decision to change doctors last spring when Maggie was having such trouble. We didn't and continued to work through things with him on our team. He apologized and told me that Maggie has changed the way he treats his patients. In the end, we are lucky to have him as part of the medical team that takes care of both of my children. I have great faith and belief that this man was put in our life to help us walk this journey. God has a way of sending angels to guide us and protect us. Dr. Borus has been that for us many times. I am sending many prayers of thanks since early this afternoon.
Tuesday, May 24, 2011
Anger
I am not even sure how or what to write today. I took Maggie to her ENT appointment this afternoon. She still had a fever last night of 100.5 degrees and complaining about her head. I looked forward to getting some resolution to this chronic crisis that has taken over Maggie's head. My nerves were on edge because both her immunologist and pediatrician had talked about how surgery or scoping might be a great idea to get an idea of what is happening. The surgery was put out there to try and resolve the whole chronic infection part. The less infections, the less need for antibiotics and the lack of choice of antibiotics was the core of the problem.
I was prepared with all the information, medicines and dates of the last month and a half. Dr. Sprecher walked in, sat down and bluntly said, "So what is the problem?" The conversation went down hill from there. He examined Maggie very quickly and saw her basic demeanor. In 15 minutes he decided she is perfectly healthy and there is no real concern. I was advised that at this point we need to continue to utilize the Nasonex and come back in 2 weeks for ANOTHER ct scan.
I, being me, had millions of questions. I was taken aback because his assessment seemed so different from both of Maggie's primary doctors. I asked about the culture and previous ct scan that Dr. T had worked from. I was advised that a child with just a cold could present a ct scan like Maggie's scan. The cherry on top of the sundae was when he gave me a whole list of studies (which I remember nothing that he said) about giving people colds and this is how it presents. Finally, he told me that the nasal culture that Dr. T was useless. I will quote, "A normal, healthy child in daycare could get swabbed and come up with the same thing any day of the week." I can't repeat the words that went through my head at that moment. I brought up the long-term concern of to many infections and no antibiotics that work. I noted her primary immune deficiency. He barely answered and centered on the fact that maybe Maggie was pretending to be sick or maybe just has migraines.
So I left shaken and confused. I actually ran into Dr. T in the hall and told him quickly the diagnosis. He didn't sound to concerned but very busy. I processed this information and all I could think was, "Was I crazy? Did I make this up? Dr T did treat her so there must have been something right?" After talking to Rick, I made an appointment for Friday with Dr. T to discuss the situation and get the name of another ENT. I have a list of questions to go over with him about what has happened the past week or so. Until then, I will call her pediatrician about an appointment for the migraines and look into a 2nd opinion on my own.
I have no idea what is happening here with my kid. It is scary but in the end it was it is and I just have to do the best I can. I don't always understand how the immune issues effect things so I will have to ask the questions, prayer and try to make the best decisions I can. So now with all that has gone on I am so confused. It is time for a bath, some prayer and quiet mediation. And it will all probably look more clear in the morning - I hope!
I was prepared with all the information, medicines and dates of the last month and a half. Dr. Sprecher walked in, sat down and bluntly said, "So what is the problem?" The conversation went down hill from there. He examined Maggie very quickly and saw her basic demeanor. In 15 minutes he decided she is perfectly healthy and there is no real concern. I was advised that at this point we need to continue to utilize the Nasonex and come back in 2 weeks for ANOTHER ct scan.
I, being me, had millions of questions. I was taken aback because his assessment seemed so different from both of Maggie's primary doctors. I asked about the culture and previous ct scan that Dr. T had worked from. I was advised that a child with just a cold could present a ct scan like Maggie's scan. The cherry on top of the sundae was when he gave me a whole list of studies (which I remember nothing that he said) about giving people colds and this is how it presents. Finally, he told me that the nasal culture that Dr. T was useless. I will quote, "A normal, healthy child in daycare could get swabbed and come up with the same thing any day of the week." I can't repeat the words that went through my head at that moment. I brought up the long-term concern of to many infections and no antibiotics that work. I noted her primary immune deficiency. He barely answered and centered on the fact that maybe Maggie was pretending to be sick or maybe just has migraines.
So I left shaken and confused. I actually ran into Dr. T in the hall and told him quickly the diagnosis. He didn't sound to concerned but very busy. I processed this information and all I could think was, "Was I crazy? Did I make this up? Dr T did treat her so there must have been something right?" After talking to Rick, I made an appointment for Friday with Dr. T to discuss the situation and get the name of another ENT. I have a list of questions to go over with him about what has happened the past week or so. Until then, I will call her pediatrician about an appointment for the migraines and look into a 2nd opinion on my own.
I have no idea what is happening here with my kid. It is scary but in the end it was it is and I just have to do the best I can. I don't always understand how the immune issues effect things so I will have to ask the questions, prayer and try to make the best decisions I can. So now with all that has gone on I am so confused. It is time for a bath, some prayer and quiet mediation. And it will all probably look more clear in the morning - I hope!
Monday, May 23, 2011
Family Walk
Lately we have been taking a family walk every evening. We head out right before dinner or just after for a walk around the neighborhood. Rick and I thought it would be a great way to get a little fresh air, exercise and spend some time together. Tonight we took our walk before dinner with some prodding from Ricks. As usual, Maggie and Rick walked ahead while Ricks and I plodded behind.
I have been trying to stop and take notice of all the blessings in my life during the past week or so. It is so easy to get stuck in the negative, stress and fear. I don't want, nor can afford, to sit in that junk. One of the tools I have been using is the power of positive thinking and gratitude. I looked around at my family and felt the love and gratefulness rise up. We may have hit a bumpy spot but we are in it together. I am one of the luckiest women in the world!
As I observed everyone I noticed how much of my kids' personalities were shining just in this walk. Maggie was running ahead of us, stopping to yell back her latest find or telling us to hurry up. She would race back to give us a flower or freeze her body when we asked her to stop. Every once and a while Maggie would come back to hold hands with Rick and ask him a question or how something work. She is my independent, curious spark plug. Always moving and talking and learning her way through life. There is not a lot of clinging to us but she always comes back to check in.
Now her little brother is definitely a different story. Ricks rarely lets go of my finger. He walks along happily, singing and talking. He stops here and there to lean down and touch the grass or flower. In a rare moment he might let go and race to catch up to Maggie. Most of the time he holds on to my finger as tight as he cans as he smiles and sings his way through the walk. Ricks in a nutshell - happy and content. He is a Mama's Boy who doesn't care to wander to far from me. Even with that he is curious and joyful in his experiences. Finally, he does have that small dose of sibling rivalry and is pushed to keep up with is bigger and faster sister. Mainly, he just like to keep close and celebrate life.
I thank God that I have such different children. Maggie amazes me everyday and Ricks brings such joy. Today I was talking to Maggie about her goldfish because it looked like one might not make it. Her response, "Mom it is okay because they are goldfish and things like that just happen. We can get another Kate if we need" WOW! How can a 4 year old be so wise? And that gorgeous Little Man? He just loves his Mama. Okay so he can be mischievous and Dr. Destructo but he is so darn adorable. When he kisses me at the end of time outs, my heart melts.
As you can see I am pretty taken with my two angels. God has given me these amazing people to love and raise. It has been a crazy couple of weeks and I just wanted a post to remember how wonderful they are!!!!
I have been trying to stop and take notice of all the blessings in my life during the past week or so. It is so easy to get stuck in the negative, stress and fear. I don't want, nor can afford, to sit in that junk. One of the tools I have been using is the power of positive thinking and gratitude. I looked around at my family and felt the love and gratefulness rise up. We may have hit a bumpy spot but we are in it together. I am one of the luckiest women in the world!
As I observed everyone I noticed how much of my kids' personalities were shining just in this walk. Maggie was running ahead of us, stopping to yell back her latest find or telling us to hurry up. She would race back to give us a flower or freeze her body when we asked her to stop. Every once and a while Maggie would come back to hold hands with Rick and ask him a question or how something work. She is my independent, curious spark plug. Always moving and talking and learning her way through life. There is not a lot of clinging to us but she always comes back to check in.
Now her little brother is definitely a different story. Ricks rarely lets go of my finger. He walks along happily, singing and talking. He stops here and there to lean down and touch the grass or flower. In a rare moment he might let go and race to catch up to Maggie. Most of the time he holds on to my finger as tight as he cans as he smiles and sings his way through the walk. Ricks in a nutshell - happy and content. He is a Mama's Boy who doesn't care to wander to far from me. Even with that he is curious and joyful in his experiences. Finally, he does have that small dose of sibling rivalry and is pushed to keep up with is bigger and faster sister. Mainly, he just like to keep close and celebrate life.
I thank God that I have such different children. Maggie amazes me everyday and Ricks brings such joy. Today I was talking to Maggie about her goldfish because it looked like one might not make it. Her response, "Mom it is okay because they are goldfish and things like that just happen. We can get another Kate if we need" WOW! How can a 4 year old be so wise? And that gorgeous Little Man? He just loves his Mama. Okay so he can be mischievous and Dr. Destructo but he is so darn adorable. When he kisses me at the end of time outs, my heart melts.
As you can see I am pretty taken with my two angels. God has given me these amazing people to love and raise. It has been a crazy couple of weeks and I just wanted a post to remember how wonderful they are!!!!
Sunday, May 22, 2011
One More Day
We have made it through the weekend. Now to get through Monday and we reach our ENT appointment day. It has been interesting this weekend. Maggie has definitely had her moments and we have struggled a bit. Overall we enjoyed the sunny weather and each other. It wasn't as bad as I feared. The lesson again is if you stay in the moment and let go, things turn out just as the should. In church I was reminded how challenging faith can be but in the end the miracles it can bring. This weekend has been a miracle in a tornado of craziness. Thanks God for giving us a few moments to breath before the week begins!
Saturday, May 21, 2011
Normalcy
Today I have tried to return us to a bit of normalcy. The beautiful weather helped me out because we could get out and play. Some fun time on our new swing and the always fun sand box. The kids ended up exhausted, muddy and happy. So the day was actually a good one and ended with dinner at Applebees with Grandma. I, of course, have yet to make the grocery store or organize dinners. At the end of the day we curled up, cuddled up and slowed down.
Now it is bedtime and we have gone back to Maggie's bed time routine. Stories and lights out in her own bed. She is struggling with some tears but exhausted so I think it won't take long. I actually just checked her because it got quiet and she is inches from sound sleep. I feel the transition back to routine might be hard but much needed for my sanity.
It is funny because this is one of those moments where our life is still crazy but the world goes on. I long for routine and normalcy but can only achieve it in small increments. It is all a part of having chronic medical concerns. Maggie is still sick, I am still doing my best to survive and find some balance and we are all just trying to figure it out.
I guess the hard part is while I am still stuck on this roller coaster, everyone else's life keeps moving on. I can't say I feel lonely because God is always there. I guess I just feel isolated the last couple of days. After this week I am to spent to pick up the phone but a part of me needs to let go. I know I should reach out but I usually don't get time until after 9 and I am done. I really just could use some time to unload. A few moments to spend just letting my guard down and not be the caretaker would do wonders.
Thank God for the other members of the PI group on facebook. They do understand what it means to deal on a consistent, chronic basis. They get the fears, hopes and heart break. The bonus is they also comprehend that these crisis can take more than a week. It may take 2 or more because of the immune issues (although this one feels like it is taking years). I just wish they were in the same area where I could actually do more than switch emails.
We have a long week or so ahead. I am hoping to at least grab a pedicure and maybe even a dinner to myself. A moment or two to breath. And then back to reality!
Now it is bedtime and we have gone back to Maggie's bed time routine. Stories and lights out in her own bed. She is struggling with some tears but exhausted so I think it won't take long. I actually just checked her because it got quiet and she is inches from sound sleep. I feel the transition back to routine might be hard but much needed for my sanity.
It is funny because this is one of those moments where our life is still crazy but the world goes on. I long for routine and normalcy but can only achieve it in small increments. It is all a part of having chronic medical concerns. Maggie is still sick, I am still doing my best to survive and find some balance and we are all just trying to figure it out.
I guess the hard part is while I am still stuck on this roller coaster, everyone else's life keeps moving on. I can't say I feel lonely because God is always there. I guess I just feel isolated the last couple of days. After this week I am to spent to pick up the phone but a part of me needs to let go. I know I should reach out but I usually don't get time until after 9 and I am done. I really just could use some time to unload. A few moments to spend just letting my guard down and not be the caretaker would do wonders.
Thank God for the other members of the PI group on facebook. They do understand what it means to deal on a consistent, chronic basis. They get the fears, hopes and heart break. The bonus is they also comprehend that these crisis can take more than a week. It may take 2 or more because of the immune issues (although this one feels like it is taking years). I just wish they were in the same area where I could actually do more than switch emails.
We have a long week or so ahead. I am hoping to at least grab a pedicure and maybe even a dinner to myself. A moment or two to breath. And then back to reality!
Friday, May 20, 2011
A Letter to God
Dear God,
I want to take a minute and write you this thank you for the little angel you blessed my life with a little over 4 years ago. Maggie has been one of the biggest and best parts of my life. I spent many years of my life searching. Then one day a nurse put this sweet little bundle in my arms and I knew in every part of me that this was it. I had found the answer to all that I was looking for.
In the past 4 years Maggie has taught me so much about life and myself. She has taught me about joy and love (the unselfish, unconditional kind). Her strength and determination amazes me as she overcomes obstacle after obstacle. And her independent, self-reliance just leaves me speechless. I have wasted so much time worrying in my life about who I am and who likes me. My girl, she knows who she is and has a self-assured attitude already at 4. Her independence could be seen early on in her life and has served her well with a Momma who loves to love her. She lets me know when to step back and has charted her own course even when I struggled to let go.
I suppose you already know 2 of the most special things about her - her heart and her faith. Maggie has huge heart that wants to love and accept everyone. She can't even bear to pick a favorite color because she doesn't want to hurt the other colors' feelings. At her school conference her teachers told me that she is the one child to always put her hand out to the friend who is sad or having trouble. There is a little boy in her class who has some developmental delays and Maggie constantly reaches out to him to be her friend.
God, Maggie's faith is just endless. I wanted to teach her all about You and Your love. I started talking to her about it even before she was born. She took to it and embraced it in a way that stunned me. I believe she has taught me about loving and trusting You. I don't believe at 4 I felt Your presence and love as strongly as she does. Nor did I verbalize it to the world around me. She is a model to me of faith and strength every day.
The reason I am writing this letter is our special girl is really sick. The next couple weeks are probably going to be a bit difficult and painful. I know Maggie will soldier on with strength through the tough times. Even so, she is still so little and it breaks my heart. I love her with all of my heart and soul. She is my sunshine that brightens every moment (even the temper tantrum ones). Please continue to be with her and hold her in Your strong and comforting hands. Give me the strength and calm to do what is needed. Bless me with patience and understanding for the moments we are all stressed and struggling. Most of all, help me to shower her with love in every moment. I know You are with us on this journey. We are never alone and can trust that when we stumble You will pick us up.
Thanks again God for my princess. Without Maggie in my life, there would be a hole that would ache for her spark and energy. She fills me with love, laughter and amazement every day. You have made me the luckiest Mommy in the world. God bless my angel.
Love for always,
Suzi
I want to take a minute and write you this thank you for the little angel you blessed my life with a little over 4 years ago. Maggie has been one of the biggest and best parts of my life. I spent many years of my life searching. Then one day a nurse put this sweet little bundle in my arms and I knew in every part of me that this was it. I had found the answer to all that I was looking for.
In the past 4 years Maggie has taught me so much about life and myself. She has taught me about joy and love (the unselfish, unconditional kind). Her strength and determination amazes me as she overcomes obstacle after obstacle. And her independent, self-reliance just leaves me speechless. I have wasted so much time worrying in my life about who I am and who likes me. My girl, she knows who she is and has a self-assured attitude already at 4. Her independence could be seen early on in her life and has served her well with a Momma who loves to love her. She lets me know when to step back and has charted her own course even when I struggled to let go.
I suppose you already know 2 of the most special things about her - her heart and her faith. Maggie has huge heart that wants to love and accept everyone. She can't even bear to pick a favorite color because she doesn't want to hurt the other colors' feelings. At her school conference her teachers told me that she is the one child to always put her hand out to the friend who is sad or having trouble. There is a little boy in her class who has some developmental delays and Maggie constantly reaches out to him to be her friend.
God, Maggie's faith is just endless. I wanted to teach her all about You and Your love. I started talking to her about it even before she was born. She took to it and embraced it in a way that stunned me. I believe she has taught me about loving and trusting You. I don't believe at 4 I felt Your presence and love as strongly as she does. Nor did I verbalize it to the world around me. She is a model to me of faith and strength every day.
The reason I am writing this letter is our special girl is really sick. The next couple weeks are probably going to be a bit difficult and painful. I know Maggie will soldier on with strength through the tough times. Even so, she is still so little and it breaks my heart. I love her with all of my heart and soul. She is my sunshine that brightens every moment (even the temper tantrum ones). Please continue to be with her and hold her in Your strong and comforting hands. Give me the strength and calm to do what is needed. Bless me with patience and understanding for the moments we are all stressed and struggling. Most of all, help me to shower her with love in every moment. I know You are with us on this journey. We are never alone and can trust that when we stumble You will pick us up.
Thanks again God for my princess. Without Maggie in my life, there would be a hole that would ache for her spark and energy. She fills me with love, laughter and amazement every day. You have made me the luckiest Mommy in the world. God bless my angel.
Love for always,
Suzi
The Weekend
Maggie has finished her round of IV antibiotics and I had my reassessment meeting with Dr. T. The blunt truth is the antibiotics have not seemed to work. Maggie still has fevers and today told us her head hurt worse. Her basic demeanor was sicker - she was more lethargic and definitely cranky. During her IV she laid on me and almost fell asleep. Even Dr. T noted how pale and out of it she looked. His feeling is that the antibiotic has held the infection in check but not cleared it. The bacteria showed partial resistance to this medication and so they used a high dose. In the end the bacteria has seem to have won.
Dr. T has nothing left in his tool box to beat it. It is now up to the ENT to figure out exactly what is going on and how we get rid of it. The problem is the ENT is not in the office until Tuesday. So we are off antibiotics and hoping what she holds her until then. It is pretty scary knowing this big bacteria has pretty much taken over your kid's head and there is not much that can be done about it now. On Tuesday we will meet with Dr. Sprecher and he will exam her. Then he will make a decision and we have no clue exactly what that will be.
The whole situation is now a waiting game. It is many prayers that the infection stays status quo and doesn't get worse. I have directions on what to do if the fevers spike high or she gets progressively worse over the weekend. It is pretty simple - call Dr. T! Dr. T felt horrible that he did not have a better option for us. He understood my concerns and heartbreak. Again, we are so lucky to have such a GREAT immunologist. He took so much time discussing the situation and trying to figure out if there was anything else he could do to hold her until Tuesday.
It is all a roller coaster of emotion. I have my fears, sadness and anger. Overall I feel this safety and strength. I wouldn't say it is a calmness but a quietness. It is allowing me to focus on the important stuff and stay right here in the moment. This quietness helps me to remember what is important and what I can put aside until later. I have a clarity, even through my exhaustion, about life and all that is happening. Usually in these situations I am a ball of fear and anxiety. I struggle to keep my sanity. Today I feel sane and safe. I am not saying it is not hard or trying but somehow it is okay. God is a miracle worker. He has blessed me with this quietness and strength. He is helping me walk through the moment and be the best Mom I can be. All the info, medicine, etc. will not matter as much as love, stability and tlc from me. So I am grateful that on my journey I have been able to build a my relationship with God. I am glad to have Him so central in my life. Without His love, strength and guidance this would be a much lonelier and scarier ride.
Dr. T has nothing left in his tool box to beat it. It is now up to the ENT to figure out exactly what is going on and how we get rid of it. The problem is the ENT is not in the office until Tuesday. So we are off antibiotics and hoping what she holds her until then. It is pretty scary knowing this big bacteria has pretty much taken over your kid's head and there is not much that can be done about it now. On Tuesday we will meet with Dr. Sprecher and he will exam her. Then he will make a decision and we have no clue exactly what that will be.
The whole situation is now a waiting game. It is many prayers that the infection stays status quo and doesn't get worse. I have directions on what to do if the fevers spike high or she gets progressively worse over the weekend. It is pretty simple - call Dr. T! Dr. T felt horrible that he did not have a better option for us. He understood my concerns and heartbreak. Again, we are so lucky to have such a GREAT immunologist. He took so much time discussing the situation and trying to figure out if there was anything else he could do to hold her until Tuesday.
It is all a roller coaster of emotion. I have my fears, sadness and anger. Overall I feel this safety and strength. I wouldn't say it is a calmness but a quietness. It is allowing me to focus on the important stuff and stay right here in the moment. This quietness helps me to remember what is important and what I can put aside until later. I have a clarity, even through my exhaustion, about life and all that is happening. Usually in these situations I am a ball of fear and anxiety. I struggle to keep my sanity. Today I feel sane and safe. I am not saying it is not hard or trying but somehow it is okay. God is a miracle worker. He has blessed me with this quietness and strength. He is helping me walk through the moment and be the best Mom I can be. All the info, medicine, etc. will not matter as much as love, stability and tlc from me. So I am grateful that on my journey I have been able to build a my relationship with God. I am glad to have Him so central in my life. Without His love, strength and guidance this would be a much lonelier and scarier ride.
Thursday, May 19, 2011
The Plan
Dr. T has a plan. It is not the plan I want or agree with but it is the best plan available to us. We are going to do our last round of antibiotics tomorrow and see the ENT on Tuesday. Maggie still has a fever and her head hurts in all the original spots. As Dr. T put it, clinically it is best for the ENT to see Maggie after she has been off the antibiotics for a couple of days. They want to see what the bacteria/infection does. I want my kid to feel better. There is a bit of disconnect in the "Plan".
I have spent all kinds of emotion on this situation. In the end, I can do nothing but express my concerns and follow doctor's orders. I trust Dr. T and his medical team enough to let it go and do what is directed. He doesn't feel the infection will do any serious harm or damage. He assured me that she won't feel well but she will be okay. I wanted to scream at him that if it were his kid would he continue to let him suffer in pain. It breaks my heart when she struggles or breaks down. Or just knowing how much her head hurts. How can I agree to let it go for a couple of days just because it is "clinically" the best decision?
Maggie is a trooper and has a seemingly high threshold of pain. She amazes me daily with her strength and ability to power through. If my sinuses looked like hers, I would be laying in bed with a washcloth on my forehead and moaning in pain. Maggie is up trying to do all her normal activities. She is laughing and smiling. She plays with her brother, friends and even on her own.
Of course at the end of the day she crashes. This is not a pretty sight. It is full of tears and sadness. It breaks my heart over and over again. Sometimes she makes it through school or a play date just fine. But when she has expended all her energy and feels the safety of her Mom - it is meltdown city. We have had temper tantrums of epic proportions and lots of screaming. Rick and I work hard to keep the limits and expectations constant. It is consistency that, I believe, helps her to feel safe. Maggie knows that rain or shine, sick or well, whatever is going on we don't bend or fold. Our rules keep her safe and loved. I was a bit worried about our choice to stay tough. The pediatrician listened to my concerns and supported/encouraged what we were doing.
It has been an awful week for my baby. I laid with her tonight and cuddled her close wishing for a quick and painless end. I don't think I will get that wish. So that means more strength and love is needed. Thank God for all the love, support and guidance that is available to help me be the Momma she needs. I am so blessed that I don't have to deal with this alone. No matter what the "plan", it is all okay.
I have spent all kinds of emotion on this situation. In the end, I can do nothing but express my concerns and follow doctor's orders. I trust Dr. T and his medical team enough to let it go and do what is directed. He doesn't feel the infection will do any serious harm or damage. He assured me that she won't feel well but she will be okay. I wanted to scream at him that if it were his kid would he continue to let him suffer in pain. It breaks my heart when she struggles or breaks down. Or just knowing how much her head hurts. How can I agree to let it go for a couple of days just because it is "clinically" the best decision?
Maggie is a trooper and has a seemingly high threshold of pain. She amazes me daily with her strength and ability to power through. If my sinuses looked like hers, I would be laying in bed with a washcloth on my forehead and moaning in pain. Maggie is up trying to do all her normal activities. She is laughing and smiling. She plays with her brother, friends and even on her own.
Of course at the end of the day she crashes. This is not a pretty sight. It is full of tears and sadness. It breaks my heart over and over again. Sometimes she makes it through school or a play date just fine. But when she has expended all her energy and feels the safety of her Mom - it is meltdown city. We have had temper tantrums of epic proportions and lots of screaming. Rick and I work hard to keep the limits and expectations constant. It is consistency that, I believe, helps her to feel safe. Maggie knows that rain or shine, sick or well, whatever is going on we don't bend or fold. Our rules keep her safe and loved. I was a bit worried about our choice to stay tough. The pediatrician listened to my concerns and supported/encouraged what we were doing.
It has been an awful week for my baby. I laid with her tonight and cuddled her close wishing for a quick and painless end. I don't think I will get that wish. So that means more strength and love is needed. Thank God for all the love, support and guidance that is available to help me be the Momma she needs. I am so blessed that I don't have to deal with this alone. No matter what the "plan", it is all okay.
Wednesday, May 18, 2011
One Tiny Step Forward, Two Steps Back
The fever and head pain is back. The doctor is wondering if the oral steroids masked the fever and it never really went away. This says to me that the infection is as strong as ever. I really don't think that the antibiotic has worked at all. This scares the daylights out of me. My gut again feels as if I have been punched. I have to keep my thoughts and mind in the present of the fear takes over. My heart breaks that my girl has to go through this and we have no idea what is to come.
Today the Dr. T laid out a plan to finish the antibiotic Friday and keep our appointment with Dr. Sprecher on Tuesday. My "Momma Bear" attitude came out and I told him this was not acceptable. I am not comfortable sitting on this infection until Tuesday. If it is continuing to take over her head and causing her to not feel well we need to resolve this concern. I will not sit back while my baby is in pain. Whatever we need to do to get rid of the infection needs to be tried.
So the plan changed to reassessing tomorrow when Maggie is in for her antibiotics. If there is no improvement or she is worse, we get the ENT involved. I have no idea what that means. Dr. T said it could mean more antibiotics, scoping her sinuses or surgery right away. It all feels to much to even wrap my mind around. I know that tonight she told me that she felt "real sick". My heart just froze in fear. My poor baby is being taken over by whatever this "thing" is in her head.
I don't know what tomorrow will bring. I am just trying to stay in tonight. I will get to tomorrow in the morning. Of course it is already a busy day. We have Maggie's 4 year check up which Dr. T recommended we keep. Then we grab a quick lunch before the antibiotic. Rick and I are supposed to go to a meeting. I have a babysitter coming at 2. This part of the day may change and our journey may take yet another turn.
Today the Dr. T laid out a plan to finish the antibiotic Friday and keep our appointment with Dr. Sprecher on Tuesday. My "Momma Bear" attitude came out and I told him this was not acceptable. I am not comfortable sitting on this infection until Tuesday. If it is continuing to take over her head and causing her to not feel well we need to resolve this concern. I will not sit back while my baby is in pain. Whatever we need to do to get rid of the infection needs to be tried.
So the plan changed to reassessing tomorrow when Maggie is in for her antibiotics. If there is no improvement or she is worse, we get the ENT involved. I have no idea what that means. Dr. T said it could mean more antibiotics, scoping her sinuses or surgery right away. It all feels to much to even wrap my mind around. I know that tonight she told me that she felt "real sick". My heart just froze in fear. My poor baby is being taken over by whatever this "thing" is in her head.
I don't know what tomorrow will bring. I am just trying to stay in tonight. I will get to tomorrow in the morning. Of course it is already a busy day. We have Maggie's 4 year check up which Dr. T recommended we keep. Then we grab a quick lunch before the antibiotic. Rick and I are supposed to go to a meeting. I have a babysitter coming at 2. This part of the day may change and our journey may take yet another turn.
Tuesday, May 17, 2011
Emotions
I have run the whole gamut of emotions today, sometimes all within a half hour. I go from feeling okay, to being completely sad, to feeling powerless and on to anger. In the end, I always come back to faith.
I took Maggie to school today. I had to stay because the catheter is still in for the IV. I was glad for her to get back so some kind of normalcy and happy to see her running around with her friends. Then I stepped back and watched as she started to tire a bit. I took notice of the bulky area on her little arm where the catheter was covered. I felt sad, honestly depressed, that my little girl doesn't have the chance to be "little" like her friends. The depression fell into anger and I started to bargain with God.
We had a good IV session and Maggie was full of giggles with Dr. T. I again felt overjoyed and grateful for her medical team. I went through a bit of denial about how concerning or serious all of this is (in my head of course). The anger came as I realized we could be doing this past Friday. Finally, I just felt sad, again, that my baby has to deal with things that adults struggle with.
These emotions and range are all a normal part of the grieving process. There are so many things I think I am grieving with Maggie's PI. At the same time, there are so many blessings and gifts. I suppose that is just how life is. It is full of pain and sorrow but also beauty and joy. The craziness is sometimes these things are all wrapped up in one experience. The key is being present and walking through each moment and emotion. I cannot get "stuck" or allow the fear/anxiety to take over. It is life and it happens. I have opportunity to do with it whatever I want. I can celebrate it or mourn it. It is my choice how I chose to perceive and live in each moment.
It is important for me to live each moment to it's full potential. I want to teach my kids to embrace life and deal positively with ALL that life throws at them. I don't want them to hide, suppress or medicate to run from the bad or good. I have learned that each feeling or experiences passes or changes quickly. I want them to realize that and find the positive or gifts in it all. One of the best tools I can give them to do this is faith.
The past week my faith has grown in ways I didn't think possible. I struggled with fear and sadness but never felt anxious and alone. It occurred to me the other night that I felt a calm while still feeling overwhelmed. I guess that surprised me. I didn't feel like I was holding on to God as tight as I could. I actually felt this peace that He was holding me and Maggie (actually the whole family). It is this peace which gives me the strength to walk through each emotion. I have complete confidence that no matter where this journey takes me, I have all I need for exactly where I am at.
I took Maggie to school today. I had to stay because the catheter is still in for the IV. I was glad for her to get back so some kind of normalcy and happy to see her running around with her friends. Then I stepped back and watched as she started to tire a bit. I took notice of the bulky area on her little arm where the catheter was covered. I felt sad, honestly depressed, that my little girl doesn't have the chance to be "little" like her friends. The depression fell into anger and I started to bargain with God.
We had a good IV session and Maggie was full of giggles with Dr. T. I again felt overjoyed and grateful for her medical team. I went through a bit of denial about how concerning or serious all of this is (in my head of course). The anger came as I realized we could be doing this past Friday. Finally, I just felt sad, again, that my baby has to deal with things that adults struggle with.
These emotions and range are all a normal part of the grieving process. There are so many things I think I am grieving with Maggie's PI. At the same time, there are so many blessings and gifts. I suppose that is just how life is. It is full of pain and sorrow but also beauty and joy. The craziness is sometimes these things are all wrapped up in one experience. The key is being present and walking through each moment and emotion. I cannot get "stuck" or allow the fear/anxiety to take over. It is life and it happens. I have opportunity to do with it whatever I want. I can celebrate it or mourn it. It is my choice how I chose to perceive and live in each moment.
It is important for me to live each moment to it's full potential. I want to teach my kids to embrace life and deal positively with ALL that life throws at them. I don't want them to hide, suppress or medicate to run from the bad or good. I have learned that each feeling or experiences passes or changes quickly. I want them to realize that and find the positive or gifts in it all. One of the best tools I can give them to do this is faith.
The past week my faith has grown in ways I didn't think possible. I struggled with fear and sadness but never felt anxious and alone. It occurred to me the other night that I felt a calm while still feeling overwhelmed. I guess that surprised me. I didn't feel like I was holding on to God as tight as I could. I actually felt this peace that He was holding me and Maggie (actually the whole family). It is this peace which gives me the strength to walk through each emotion. I have complete confidence that no matter where this journey takes me, I have all I need for exactly where I am at.
Monday, May 16, 2011
Special People
This weekend was one of our worst. Maggie had such a hard time with the visiting nurses and the IV's. This morning I was still exhausted both physically and mentally. Emotionally, I felt like I was in some sort of Twilight Zone. I decided to skip school and try to get in sooner to Dr. T's for Mag's daily dose of antibiotic. After a call, our favorite nurse, Nicole, took us right away.
Maggie was not happy at all to hear of my IV decision. She still wanted to go to school and skip the IV all together. I grabbed a screaming child up at home, placed her in the car, picked her up at the office building and carried her into Dr. T's office. Once she saw Nicole, she began to settle a little. We did the IV, got the medicine and checked in with both Dr. Chearnin and Dr. T.
As a treat for leaving the IV in, I took Mags to lunch. She was calm and happy again. I couldn't get a word in as she chatted away. As we pulled out she told me, "Mom I just needed my Nicole to help me with my IV's. That makes it all better." What a blessing that in this time of medical craziness this angel has been sent to us.
A year ago we met Nicole during Maggie's first round of IV antibiotics. This nurse touched my little girl's soul and made a connection. Maggie adores her and talks about her even when she is healthy. She makes pictures for Nicole which still hang in Dr. T's office. Nicole shares stories about her little girls and takes time to ask Maggie lots of silly questions. I can't tell you how many times in the past year I have said a prayer of thanks for this special woman.
It sounds crazy but just checking in with Nicole, Dr. Chearnin(another special lady we have met on this journey) and Dr. T has helped calm both our nerves. I felt like I could take a breath and relax. Dr. T gave us the news that the antibiotics seem to be working, although at a snail's pace. For Maggie, Dr. T is a PI hero. She always has a smile for him and listens to what he says. She truly adores him and wants to be just like him. It is reassuring to know that she trusts the doctor who is in charge of her care. What is more reassuring is to see how much he is invested in her care. He always takes notice of her, sees her when I call and even fits her in before office hours if he has too.
It has been a hard couple of weeks and I have really felt God present in each moment. He has been present in these special people. They are His angels He has sent to take care of my girl. I truly believe he has placed them in our lives to help us manage and navigate this PI journey. And in times like these, He has spoken through them with words of wisdom, strength and support. I cherish everyone of them. Even if we have to move on to a different medical team (breaks my heart to even think of) I will remember each one of them with much love.
Maggie was not happy at all to hear of my IV decision. She still wanted to go to school and skip the IV all together. I grabbed a screaming child up at home, placed her in the car, picked her up at the office building and carried her into Dr. T's office. Once she saw Nicole, she began to settle a little. We did the IV, got the medicine and checked in with both Dr. Chearnin and Dr. T.
As a treat for leaving the IV in, I took Mags to lunch. She was calm and happy again. I couldn't get a word in as she chatted away. As we pulled out she told me, "Mom I just needed my Nicole to help me with my IV's. That makes it all better." What a blessing that in this time of medical craziness this angel has been sent to us.
A year ago we met Nicole during Maggie's first round of IV antibiotics. This nurse touched my little girl's soul and made a connection. Maggie adores her and talks about her even when she is healthy. She makes pictures for Nicole which still hang in Dr. T's office. Nicole shares stories about her little girls and takes time to ask Maggie lots of silly questions. I can't tell you how many times in the past year I have said a prayer of thanks for this special woman.
It sounds crazy but just checking in with Nicole, Dr. Chearnin(another special lady we have met on this journey) and Dr. T has helped calm both our nerves. I felt like I could take a breath and relax. Dr. T gave us the news that the antibiotics seem to be working, although at a snail's pace. For Maggie, Dr. T is a PI hero. She always has a smile for him and listens to what he says. She truly adores him and wants to be just like him. It is reassuring to know that she trusts the doctor who is in charge of her care. What is more reassuring is to see how much he is invested in her care. He always takes notice of her, sees her when I call and even fits her in before office hours if he has too.
It has been a hard couple of weeks and I have really felt God present in each moment. He has been present in these special people. They are His angels He has sent to take care of my girl. I truly believe he has placed them in our lives to help us manage and navigate this PI journey. And in times like these, He has spoken through them with words of wisdom, strength and support. I cherish everyone of them. Even if we have to move on to a different medical team (breaks my heart to even think of) I will remember each one of them with much love.
Saturday, May 14, 2011
My Mistake
What a horrific day!! Seven sticks and no success today for the antibiotics. I made a horrible mistake letting the nurse take out the IV on Friday. The visiting nurse today was a complete disaster. Maggie thrashed and threw her tantrum (which is has been her usual this go around). The nurse got freaked and couldn't get a successful IV. Each time we had to do it, Maggie flipped out more. My baby was already traumatized by IV's and now the trauma is tripled.
My heart is completely broken for her and my stomach feels like I could puke at any second. I am frozen in some freak moment and I can't even cry. I guess it is adrenalin that keeps me going or maybe my faith. I don't know how I am walking around and doing what needs to be done. It is like I am autopilot and I just keep putting one foot in front of another. I just need to stay in the present moment and do what is in front me.
Please God help me do what needs to be done. Keep Maggie close to Your heart and help soothe her fears and sadness. Give me the strength needed to help walk her through whatever is coming her way.
My heart is completely broken for her and my stomach feels like I could puke at any second. I am frozen in some freak moment and I can't even cry. I guess it is adrenalin that keeps me going or maybe my faith. I don't know how I am walking around and doing what needs to be done. It is like I am autopilot and I just keep putting one foot in front of another. I just need to stay in the present moment and do what is in front me.
Please God help me do what needs to be done. Keep Maggie close to Your heart and help soothe her fears and sadness. Give me the strength needed to help walk her through whatever is coming her way.
Friday, May 13, 2011
In the Middle
I am somewhat speechless of what to say. The past few days have felt overwhelming in so many ways. Maggie is not just "under the weather" sick but full out, serious sick. It worries me, breaks me heart and leaves me with fear. I am holding on to God and all our other "angels" as tight as I can. Every breath I take is geared toward what we need to do for her, making sure Ricks gets his share and just trying to do the next right thing. I am spent!
It is funny because I am sort of tired of talking about it. The thought of explaining the situation or even what PI is feels exhausting. I would just love a phone call to check in with how I am or an offer to get some coffee. I got to go out with a close friend last night and just hang. It was great to just be and feel free to let it out. It is like I am caught in some "Mom nightmare". I have to continue to live up to my responsibilities like Welcome Sunday for church while trying to handle a situation of a real sick kid. To be honest, it feels a bit surreal.
All I can think if his Maggie and Ricks. I can't even waste time on who is doing or not doing what. I just have to be and be present for her. There is no timeline when this will resolve itself. How can I keep recharging when by the end of every day this week the battery is spent. I will just keep holding on.
It is funny because I am sort of tired of talking about it. The thought of explaining the situation or even what PI is feels exhausting. I would just love a phone call to check in with how I am or an offer to get some coffee. I got to go out with a close friend last night and just hang. It was great to just be and feel free to let it out. It is like I am caught in some "Mom nightmare". I have to continue to live up to my responsibilities like Welcome Sunday for church while trying to handle a situation of a real sick kid. To be honest, it feels a bit surreal.
All I can think if his Maggie and Ricks. I can't even waste time on who is doing or not doing what. I just have to be and be present for her. There is no timeline when this will resolve itself. How can I keep recharging when by the end of every day this week the battery is spent. I will just keep holding on.
Wednesday, May 11, 2011
Middle of the Night
I can't get to sleep tonight. It is like in the quiet of the night the reality of today has truly hit me. I feel like someone just punched me in the stomach as I process this morning's events. How do you really grasp it when someone tells you your baby is so sick? The fear seems to be overwhelming. And the whole IV abx process is Maggie's worst fear. It kills me that we now have to face that fear for the next 9 days. I am trying to take it One Day at a Time but all the sudden I can't breathe. My little girl has a strength in her that I can't say I have ever possessed. She is my PI hero and all I want is to hold her in my arms and make it all go away.
Strength
How do I hold my 4 year old sweet girl as she screams bloody murder while a nurse puts in an IV? How does it not break my heart into millions of pieces? The honest truth is it does break my heart and my soul aches. I see her struggle and hear her pleas to stop and let her go. In my head I know we have to do this so she can get better. At the same time my heart is screaming out in anger and sadness for this little person I love so much.
God I ask you to give me the strength to walk Maggie through the pain and hard moments to come in the next 10 days. There will be many moments where it will feel hard and overwhelming. Please help me to keep calm and be her steady rock. Remind me that I am the adult and so I need to be the strong one who carries her as you carry both of us. She is my baby no matter how old she gets. From the moment that stick showed 2 pink lines I have loved her with my whole heart and soul. God help her to feel that love and know that I am her safe haven. Watch over us both and guide me as I parent her through this medical crisis. Thank you for holding us both in Your hands and being present in each moment.
God I ask you to give me the strength to walk Maggie through the pain and hard moments to come in the next 10 days. There will be many moments where it will feel hard and overwhelming. Please help me to keep calm and be her steady rock. Remind me that I am the adult and so I need to be the strong one who carries her as you carry both of us. She is my baby no matter how old she gets. From the moment that stick showed 2 pink lines I have loved her with my whole heart and soul. God help her to feel that love and know that I am her safe haven. Watch over us both and guide me as I parent her through this medical crisis. Thank you for holding us both in Your hands and being present in each moment.
Tuesday, May 10, 2011
Tonight
I am sitting here on my bed with Maggie curled up on my lap. It is almost impossible to type but I feel the need to document the happenings of the day. After consistently beating down the door, I finally got an answer from Dr. T's office about Maggie's culture. The ONLY antibiotic that was NOT resistant to the bacteria they cultured was the one they used for her IV's. GREAT!!!
I continued to push and pester because she keeps telling me that she feels worse. The headache is now all over her head. The medical assistant said Dr. T wasn't sure what he was going to do yet. I was frustrated because who wants to sit back and watch her little baby feel so cruddy. About an hour later we got a call back from the doctor's office. Dr. T wants a ct scan of the sinuses.
Tomorrow morning at 10:30 we get Maggie's 2nd sinus ct scan. We immediately head upstairs to Dr. T and find out what the plan is. I am scared to death for Maggie and about the situation. I hate to think she will have to face her biggest fear - IV's. Not to mention, I hate the thought of having to walk through that craziness again. The biggest fear I have is that the ONLY antibiotic that could touch this bacteria is a big gun one which needs to be done intravenously. Is this a long-term concern? Will this be a reality for her for the rest of her life? How scarey is it to think that she is 4 and is encountering this situation?
I am trying to be positive and stay in the moment. It was helpful to curl up with her tonight as she fell asleep. I will be honest and admit that I have spent more than a few minutes staring at her gorgeous face. I have given her countless kisses and caressed her little head. It breaks my heart that my baby girl is going through this again. It is at these moments the anger breaks through a little and I hate her pi. Each moment of anger or sadness, I try to remind myself of faith and serenity, Sometimes it works and sometimes it falls flat.
No matter what the morning brings, I will hold her tight and love her with all I have. I will be present and strong for her and with her. I just wish it would come and we could get it over with.
I continued to push and pester because she keeps telling me that she feels worse. The headache is now all over her head. The medical assistant said Dr. T wasn't sure what he was going to do yet. I was frustrated because who wants to sit back and watch her little baby feel so cruddy. About an hour later we got a call back from the doctor's office. Dr. T wants a ct scan of the sinuses.
Tomorrow morning at 10:30 we get Maggie's 2nd sinus ct scan. We immediately head upstairs to Dr. T and find out what the plan is. I am scared to death for Maggie and about the situation. I hate to think she will have to face her biggest fear - IV's. Not to mention, I hate the thought of having to walk through that craziness again. The biggest fear I have is that the ONLY antibiotic that could touch this bacteria is a big gun one which needs to be done intravenously. Is this a long-term concern? Will this be a reality for her for the rest of her life? How scarey is it to think that she is 4 and is encountering this situation?
I am trying to be positive and stay in the moment. It was helpful to curl up with her tonight as she fell asleep. I will be honest and admit that I have spent more than a few minutes staring at her gorgeous face. I have given her countless kisses and caressed her little head. It breaks my heart that my baby girl is going through this again. It is at these moments the anger breaks through a little and I hate her pi. Each moment of anger or sadness, I try to remind myself of faith and serenity, Sometimes it works and sometimes it falls flat.
No matter what the morning brings, I will hold her tight and love her with all I have. I will be present and strong for her and with her. I just wish it would come and we could get it over with.
Monday, May 9, 2011
The Load
When the load seems overwhelming and to heavy to carry I must stop and say a prayer. Today I have needed to "stop" many times. Maggie is still full of infection and we have not received any direction on what antibiotics she can take to help. The pain is just taking over and her behavior is showing it. We had three huge temper tantrums of 40 minutes to an hour. It is killing me to have to enforce the rules and be consistent. At the same time, if we bend them now we will pay later. I learned that lesson last spring when she was sick. So we stumble through and I try to provide the stability and tlc she needs.
Ricks has his own concerns. I was sure he had 2 ear infections because of fire-engine red ears. I took him into Dr. T this morning only to find out his inner ears are fine. The redness could be due to a virus that is finishing it's reign and giving one last hurrah. Or it could be an autoimmune disease showing it's ugly face. This means that Ricks' immune system is attacking the cartilage in his ears. To mean, this sounds might scarey. If this turns out to be the reality, what does it mean? Will other parts/joints of his little 2 year body become involved? And will his immune system continue to turn on him and attack him?
All of these concerns and needs are nothing I can answer or solve tonight. My heart fills with worry and fear. I need to let it go and stay present in the moment. Right now, in this moment, I have my own sinus headache to treat. I will eat my night snack and watch my "crap" t.v. Finally, I will take a hot bath and read my mediation books. I will end the night with prayers and some silence. I hope for peace of mind and heart. I hand over my 2 most precious gifts to God on a daily (sometimes moment by moment) basis and all of those who watch over them. Please God help me to have the absolute faith and trust that no matter what happens we will walk through it together.
Ricks has his own concerns. I was sure he had 2 ear infections because of fire-engine red ears. I took him into Dr. T this morning only to find out his inner ears are fine. The redness could be due to a virus that is finishing it's reign and giving one last hurrah. Or it could be an autoimmune disease showing it's ugly face. This means that Ricks' immune system is attacking the cartilage in his ears. To mean, this sounds might scarey. If this turns out to be the reality, what does it mean? Will other parts/joints of his little 2 year body become involved? And will his immune system continue to turn on him and attack him?
All of these concerns and needs are nothing I can answer or solve tonight. My heart fills with worry and fear. I need to let it go and stay present in the moment. Right now, in this moment, I have my own sinus headache to treat. I will eat my night snack and watch my "crap" t.v. Finally, I will take a hot bath and read my mediation books. I will end the night with prayers and some silence. I hope for peace of mind and heart. I hand over my 2 most precious gifts to God on a daily (sometimes moment by moment) basis and all of those who watch over them. Please God help me to have the absolute faith and trust that no matter what happens we will walk through it together.
Saturday, May 7, 2011
Waiting Game
We are waiting for the results of the culture taken from Maggie's sinus last week. The results were due back on Thursday and still we have no answer. I called 2 times on Thursday and 2 times on Friday. Finally, I was the crazy, over worried Mother who called the after hours number on Friday night. The answer was that the bacteria involved has been resistant to every antibiotic they have tried. The University Suburban lab had to send it to the University Hospital lab for more testing.
Now I have to wait to next week sometime for an answer. There is no specific date or time, just a "as soon as they can" or "hopefully by Wednesday". Maggie is getting sicker as the days go by. She tells me her head hurts in more locations. The infection seems to be taking over her whole head again. During the day she seems able to be active and keep busy. At night, she is spent and completely unable to manage. It is like she pulls all her energy to make it through the day and at night just falls apart. That is when the temper tantrums hit and the clinginess starts. It is when there are more complaints about how she feels and how much it hurts.
So what is a Mom to do when her child is obviously sick and there is no solution for the moment? I am trying to hold it together in so many ways for Maggie. I hand her over in prayer to God, Mary, St. Therese and all the other angels in heaven watching over her. I cry a little at night and worry. There is fear but I try to utilize my faith to ease it.
These are the moments when I have that pit in my stomach and I wish I had a magic wand to make it all better. I want to grab her up and hold on as tight as I can. It is these moments which make me want to overprotect her and keep her away from all the bad things that can and will happen. The reality is I keep on praying and loving her. I remain consistent with the rules and expectations. I keep life as normal as possible and give her some extra tlc. In the end, no matter what happens or when, I need to be her rock, her safe haven and her Mommy.
Now I have to wait to next week sometime for an answer. There is no specific date or time, just a "as soon as they can" or "hopefully by Wednesday". Maggie is getting sicker as the days go by. She tells me her head hurts in more locations. The infection seems to be taking over her whole head again. During the day she seems able to be active and keep busy. At night, she is spent and completely unable to manage. It is like she pulls all her energy to make it through the day and at night just falls apart. That is when the temper tantrums hit and the clinginess starts. It is when there are more complaints about how she feels and how much it hurts.
So what is a Mom to do when her child is obviously sick and there is no solution for the moment? I am trying to hold it together in so many ways for Maggie. I hand her over in prayer to God, Mary, St. Therese and all the other angels in heaven watching over her. I cry a little at night and worry. There is fear but I try to utilize my faith to ease it.
These are the moments when I have that pit in my stomach and I wish I had a magic wand to make it all better. I want to grab her up and hold on as tight as I can. It is these moments which make me want to overprotect her and keep her away from all the bad things that can and will happen. The reality is I keep on praying and loving her. I remain consistent with the rules and expectations. I keep life as normal as possible and give her some extra tlc. In the end, no matter what happens or when, I need to be her rock, her safe haven and her Mommy.
Wednesday, May 4, 2011
Were I Am
I have had a couple of conversations tonight that have reminded of all the changes in our lives the past year. A year ago I was overwhelmed, fearful, sad, angry and completely heartbroken that my two sweet babies had selective IgA deficiency. Add into that mix the penicillin allergy, food allergies, random crazy allergies and of course the asthma. It was insane and I had 50 million questions. How we were going to do this? What did this all mean exactly? Could my kids be happy and healthy with this? How do I help them, support them or parent them? What do I need to do so this doesn't define them? Are they going to be sick all the time? Can they die from an infection? How sick can they get? Do I pull them closer or let them go? How do I protect them from a world filled with germs?.....
Those are only a sampling of the things that flew through my mind at any given moment. I spent so many days sick to my stomach and with tears in my eyes. I beat myself up for mistakes or allowing myself to feel bad. There were many more people who had it worse or whose kids were much sicker. I should suck it up and find my silver lining. I read everything and searched for all the answers I could. I drove our immunologist crazy with all my questions and fears. I was my kids' advocate and there was no way in hell I was going to let them down.
I was listening to a friend share an experience tonight and it took me right back to that place. In those moments I was determined to find all the information and make it okay for Maggie and Ricks. I was spinning the wheels to make sure I did it all and perfectly. My kids now had a chronic condition which would affect their whole lives. They weren't just sick for a day, a week or a winter. I couldn't keep them home for a time until the germs passed. I had to learn and teach them how to exist in the world. I was determined and stubborn.
Within a couple months I burned out and broke down. I was doing all the right things and my kids were thriving. We had our infections, etc. but overall it was better than expected. The doctor even gave me a pat on the back for how well they were doing. The only problem is I hadn't grieved for the situation that had thrust its way into our lives. Maybe I am a bit crazy, dramatic or emotional. Or maybe it is just how I had to process the whole thing. In the end, I had to take time out to allow myself to walk through the stages of grief.
I started to take this walk. I was angry and screamed in a journal how it sucked that my kids had to bear this burden. I cried in the tub when the sadness took over. I bargained with God that I would do anything for this not to be the reality. I even denied that this condition was that bad or serious. I told myself that it was pretty common, others were sicker and so it shouldn't be that big a deal. My faith held me strong and gave me hope. No matter how I felt I always came back to my foundation of silver linings and strength.
Now to my second conversation, I talked tonight online to a friend I met in a support group room. This woman is someone who before January I probably wouldn't mix with and might have even judged. But she has become one of my strongest allies in this war with PI. I look forward to "talking" to her and search her out for wisdom and support. When she comments or "likes" my posts, it warms my heart b/c I can feel her reach out over the computer.
Tonight we were discussing what I just shared about my beginnings and where I am now. PI is truly becoming just a part of who this family is. We can't run from it or deny it. We have embraced the deficiency and all that comes with it. There are moments I am still angry and moments that break my heart more than I ever thought it could break. But there are bright shining moments like Maggie sharing with her class about PI and being highlighted in the PI magazine. I am so grateful for the friendships I have been blessed with and the deepening of my faith. During my conversation with my online friend, I realized that one of the biggest blessings that has happened is my walk of grief has turned into a journey of self-discovery. It has opened windows, closed some doors and truly taught me about who I am at the core. I believe that I have changed from the bottom of my soul in so many ways. This has rocked some relationships in my life. It has changed them for good and bad. But in the end, PI has become not the curse I felt a year ago but a blessing that sometimes still breaks my heart and can always scare the heck out of me.
Those are only a sampling of the things that flew through my mind at any given moment. I spent so many days sick to my stomach and with tears in my eyes. I beat myself up for mistakes or allowing myself to feel bad. There were many more people who had it worse or whose kids were much sicker. I should suck it up and find my silver lining. I read everything and searched for all the answers I could. I drove our immunologist crazy with all my questions and fears. I was my kids' advocate and there was no way in hell I was going to let them down.
I was listening to a friend share an experience tonight and it took me right back to that place. In those moments I was determined to find all the information and make it okay for Maggie and Ricks. I was spinning the wheels to make sure I did it all and perfectly. My kids now had a chronic condition which would affect their whole lives. They weren't just sick for a day, a week or a winter. I couldn't keep them home for a time until the germs passed. I had to learn and teach them how to exist in the world. I was determined and stubborn.
Within a couple months I burned out and broke down. I was doing all the right things and my kids were thriving. We had our infections, etc. but overall it was better than expected. The doctor even gave me a pat on the back for how well they were doing. The only problem is I hadn't grieved for the situation that had thrust its way into our lives. Maybe I am a bit crazy, dramatic or emotional. Or maybe it is just how I had to process the whole thing. In the end, I had to take time out to allow myself to walk through the stages of grief.
I started to take this walk. I was angry and screamed in a journal how it sucked that my kids had to bear this burden. I cried in the tub when the sadness took over. I bargained with God that I would do anything for this not to be the reality. I even denied that this condition was that bad or serious. I told myself that it was pretty common, others were sicker and so it shouldn't be that big a deal. My faith held me strong and gave me hope. No matter how I felt I always came back to my foundation of silver linings and strength.
Now to my second conversation, I talked tonight online to a friend I met in a support group room. This woman is someone who before January I probably wouldn't mix with and might have even judged. But she has become one of my strongest allies in this war with PI. I look forward to "talking" to her and search her out for wisdom and support. When she comments or "likes" my posts, it warms my heart b/c I can feel her reach out over the computer.
Tonight we were discussing what I just shared about my beginnings and where I am now. PI is truly becoming just a part of who this family is. We can't run from it or deny it. We have embraced the deficiency and all that comes with it. There are moments I am still angry and moments that break my heart more than I ever thought it could break. But there are bright shining moments like Maggie sharing with her class about PI and being highlighted in the PI magazine. I am so grateful for the friendships I have been blessed with and the deepening of my faith. During my conversation with my online friend, I realized that one of the biggest blessings that has happened is my walk of grief has turned into a journey of self-discovery. It has opened windows, closed some doors and truly taught me about who I am at the core. I believe that I have changed from the bottom of my soul in so many ways. This has rocked some relationships in my life. It has changed them for good and bad. But in the end, PI has become not the curse I felt a year ago but a blessing that sometimes still breaks my heart and can always scare the heck out of me.
Tuesday, May 3, 2011
Culture
The germs have returned! Maggie seemed on the mend until yesterday. Then the complaint of her sinuses hurting and a temp. A call to Dr T's was in order. Dr. T got us in actually before office hours this morning. He took a look at her and agreed my girl is definitely under the weather. There was a large amount of florescent, yellow gunk in her left nostril/sinus. So Dr. T took a culture and now we wait to see what kind of bacteria it is. After the results we can set up a game plan to treat whatever is growing and taking residence up there.
The medical part is taken care of and now to face up to the emotional part. Maggie is a wreck. She feels awful and cannot hold it together. I think she has spent a better part of the day crying and whining. I know it is because she feels horrible but it is driving me up the wall. It doesn't help that Ricks kept me up most of the night with his 2 year molars and a crazy obsession for Elmo. I am so exhausted physically, mentally and emotionally. I am at one of those moments where I don't feel like I have one bit of strength or energy. Dr. T said this is another big infection and so that means we could be in for a fight. Another round of battling with a sinus infection feels overwhelming.
It is time to look beyond me for the strength. I have no choice in the matter. Maggie relies on me to be her advocate and caregiver. I am her safe haven in the crazy moments of a medical crisis. In any battle against an infection, I am her rock who is there no matter what the outcome or scenario. She needs me so I have to put my baggage aside. A mediation book I read talks about taking the needed quiet time with God to reload. I need to make that a priority tonight. My nerves are frayed and I am exhausted. The mere bark of the dog across the street is sending my skin crawling so the constant needs of a teething 2 year old and sick 4 old are sending me to the funny farm.
Right now in my life I am carrying this burden on my own. I am the go-to-person around her for the kids and their medical needs. I have to be on my game and prepared to do whatever is needed. It is a huge responsibility but I am their Mom. I gladly will do what is needed for them medically and emotionally. I just have to get better at taking care of myself. I need more time and ways to refuel. I do have the most important gear in the machine for recharging the battery - faith. Life can be hard but I can do hard as long as I have God. Even in my darker moments, I truly believe I am where I need to be and somehow I will walk through. I just need to hold on and keep counting my blessings.
The medical part is taken care of and now to face up to the emotional part. Maggie is a wreck. She feels awful and cannot hold it together. I think she has spent a better part of the day crying and whining. I know it is because she feels horrible but it is driving me up the wall. It doesn't help that Ricks kept me up most of the night with his 2 year molars and a crazy obsession for Elmo. I am so exhausted physically, mentally and emotionally. I am at one of those moments where I don't feel like I have one bit of strength or energy. Dr. T said this is another big infection and so that means we could be in for a fight. Another round of battling with a sinus infection feels overwhelming.
It is time to look beyond me for the strength. I have no choice in the matter. Maggie relies on me to be her advocate and caregiver. I am her safe haven in the crazy moments of a medical crisis. In any battle against an infection, I am her rock who is there no matter what the outcome or scenario. She needs me so I have to put my baggage aside. A mediation book I read talks about taking the needed quiet time with God to reload. I need to make that a priority tonight. My nerves are frayed and I am exhausted. The mere bark of the dog across the street is sending my skin crawling so the constant needs of a teething 2 year old and sick 4 old are sending me to the funny farm.
Right now in my life I am carrying this burden on my own. I am the go-to-person around her for the kids and their medical needs. I have to be on my game and prepared to do whatever is needed. It is a huge responsibility but I am their Mom. I gladly will do what is needed for them medically and emotionally. I just have to get better at taking care of myself. I need more time and ways to refuel. I do have the most important gear in the machine for recharging the battery - faith. Life can be hard but I can do hard as long as I have God. Even in my darker moments, I truly believe I am where I need to be and somehow I will walk through. I just need to hold on and keep counting my blessings.
Sunday, May 1, 2011
Time to Post
I have missed a couple of weeks due to just plain craziness and not a lot of time. I feel squeezed again tonight with cleaning to do and phone calls to make. Life is a journey and we have had a few bumps the past couple of weeks. I am grateful for the couple of friends who have patiently listened and carried me through some very trying moments. I would be lost without the women in my life and am grateful for each and every one.
The kids were heading down the road to being healthy again but seem to be backtracking. Ricky started with the runny nose over the weekend and has never stopped being congested. Maggie has seemed a bit crusty today and tonight mentioned being "a tiny bit of a yellow band aid." This means she doesn't feel 100%. So off to Dr. T we go to see what needs to be done.
I am grateful Maggie got through her birthday healthy and loved every minute. She had so much fun at her gymnastics party and her smile just radiated. It is such a joy to see her sparkle. I can't say enough how blessed I am to have such an amazing kid. She is so smart, loving, energetic, happy and filled with faith. One example is today when she, on her own, shared on of her flowers with a child at church. It was the May Crowning and he had forgotten to bring one. She is growing up and I am so proud of the person she is becoming. At Target she wanted a butterfly dress she saw. A few minutes later she saw a kitty toy and asked us for it. We told her she had to choose between the dress and the kitty. She looked so mature as she thought it over and finally chose the dress. "I have enough kitties and the dress will be so cute on me",she told us!
The past week I have really struggled on a couple of levels. I have leaned heavily on my faith and it has kept me upright. There have been moments I have wondered about choices and the future. I have fought my fears and battled my demons. In the end I look around and find the storm has passed. My life is incredibly blessed and God has me right where I need to be. There are definite moments that are hard but I can do hard. I can stand up and carry one especially when it is for my kids. I love them more than I ever thought I could love anyone or anything. For them, I can be an adult and do the work that must be done. It is all just a bump on the journey and I can't wait to see what happens next.
The kids were heading down the road to being healthy again but seem to be backtracking. Ricky started with the runny nose over the weekend and has never stopped being congested. Maggie has seemed a bit crusty today and tonight mentioned being "a tiny bit of a yellow band aid." This means she doesn't feel 100%. So off to Dr. T we go to see what needs to be done.
I am grateful Maggie got through her birthday healthy and loved every minute. She had so much fun at her gymnastics party and her smile just radiated. It is such a joy to see her sparkle. I can't say enough how blessed I am to have such an amazing kid. She is so smart, loving, energetic, happy and filled with faith. One example is today when she, on her own, shared on of her flowers with a child at church. It was the May Crowning and he had forgotten to bring one. She is growing up and I am so proud of the person she is becoming. At Target she wanted a butterfly dress she saw. A few minutes later she saw a kitty toy and asked us for it. We told her she had to choose between the dress and the kitty. She looked so mature as she thought it over and finally chose the dress. "I have enough kitties and the dress will be so cute on me",she told us!
The past week I have really struggled on a couple of levels. I have leaned heavily on my faith and it has kept me upright. There have been moments I have wondered about choices and the future. I have fought my fears and battled my demons. In the end I look around and find the storm has passed. My life is incredibly blessed and God has me right where I need to be. There are definite moments that are hard but I can do hard. I can stand up and carry one especially when it is for my kids. I love them more than I ever thought I could love anyone or anything. For them, I can be an adult and do the work that must be done. It is all just a bump on the journey and I can't wait to see what happens next.
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