How to even begin tonight's entry. Maggie and I went to the ENT today for her appointment. His assessment was that she has mucous/infection and inflammation but.... The but is that it doesn't seem to be serious enough to warrant any further (or more invasive treatment). We just need to stay the course on the nasal spray and singulair.
So how does this all sit with me when Maggie is still complaining about her head "hurting"? How do I assess myself where this whole thing is? I have absolutely no idea! I just keep praying and putting one step in front of of the other. I suppose I could shed a couple of tears to get the frustration out or take a walk to settle my craziness. In all honesty, some cheesecake and General Hospital feels like the best medicine.
It has been implied by the ENT that Maggie may be exaggerating her symptoms. Yes they are there but she is upping the ante. Do I buy it? I don't know. Is she using it to manipulate me? Could be. Or does she really feel yucky and this is just her reality? That is what the pediatrician feels is more likely. Maggie has some "stuff" going on in her head. That "stuff" is making her feel yucky but she is not sick enough to require major invasive treatment (thank God!). It just makes her feel yucky all the time.
That "yucky" may be her reality for awhile. I hate the thought of that. I struggle to wrap my heart and soul around it. I want to be able to make her 100%. To fix it and make it all better. Okay I can't do that so I need to do the next right thing. That means teaching her to rise to the challenge. To be happy, successful and well-rounded in spite of the yuckies.
I am not sure how I feel or what it all means. I will review with our trusty Dr. T and go from there. It may be time to just quit the crazy search for a resolution and work with what we have. Or maybe there is more options available that we have yet to come upon. I will just have to hand it over to God and let Him lead the way.
Thursday, July 14, 2011
Butterflies
Okay I have to admit I have butterflies in my stomach about Maggie's ENT appointment today. We have to leave in an hour and that hour can't go fast enough. I don't know if it is from the emotion of the day (extended family funeral) or the situation itself but crying feels to be on the horizon. I just am having one of those heartbreak reaction every time I have to review the past 12 weeks of my baby girl's life. She needs a break and a resolution to this situation. I just have a feeling of "we must get something done" going in to this meeting. The problem is I already know there is no guarantee that anything will be done. We may be sitting here tomorrow still counting the days that this continues. I am so grateful for a couple of pals who listened with no advice and accept my frustrations unconditionally. I truly appreciate the safe place to let off steam. It helps me to walk through the stress and get back to the moments of peace. God has definitely blessed me with support to help me along this crazy journey.
Wednesday, July 13, 2011
D-Day
Tomorrow is finally almost here!! We are finally headed back in to the ENT to reassess where Maggie is at. I don't know whether to be calm, excited, nervous or overwhelmed. A month ago Dr. T started us on a regime of Singular and Veramyst to get the inflammation down. It doesn't seem that either have worked. I don't have a very good gut instinct that we will get a solid answer on a resolution. I honestly have no idea what the ENT will say.
I am praying that Dr. Arnold has some ideas to reassess where Maggie is at. I want to hear some concrete ideas or plans to look at what is going on. Surgery may not be the best option or even an option. I don't really want it to be an option. But maybe we can do something to see how much inflammation/infection is in Maggie's head. Then we will have a better idea of how much intervention is needed.
After 12 weeks, I just want someone to make it better for her. I am feeling a bit done and I know so is Maggie. It is time to make it better and move on to other things in life. I realize this may not be the reality. We may be in for another week or month of trying to figure it all out. I just pray that God will give me the patience, wisdom and strength to handle whatever we find, or don't find, out.
I am praying that Dr. Arnold has some ideas to reassess where Maggie is at. I want to hear some concrete ideas or plans to look at what is going on. Surgery may not be the best option or even an option. I don't really want it to be an option. But maybe we can do something to see how much inflammation/infection is in Maggie's head. Then we will have a better idea of how much intervention is needed.
After 12 weeks, I just want someone to make it better for her. I am feeling a bit done and I know so is Maggie. It is time to make it better and move on to other things in life. I realize this may not be the reality. We may be in for another week or month of trying to figure it all out. I just pray that God will give me the patience, wisdom and strength to handle whatever we find, or don't find, out.
This Moment
At this moment, my children are running around like crazy. The toys are flying and the laughter loud. It feels a bit like a zoo. And life has NEVER been better! I just want to freeze this moment to hold onto it forever. How can I be so blessed with such miracles? They are so AMAZING! I am the luckiest and most blessed Mom in this universe. I believe I am going to go and enjoy the madness : )
Tuesday, July 12, 2011
I Don't Get It
I copied a status report of a friends today on facebook. It said, "Give some of that weight where it belongs - to God, and have faith that what happens to you is for the best, whether you understand it or not." I guess this past weekend and week I have struggled a bit with this. I strongly believe this and have that faith on most issues in my life.
With the kids and all their medical issues, I have no doubt that God has our back. He is holding us in the palm of his hands. I don't know why the kids have the conditions they do but I believe that it is all a part of their journey. Each crisis, obstacle and moment is to help them grow, become stronger and help them to fulfill their calling in this life.
I even believe and have faith on the basics on many things in life including parenting. Maybe that is why I find such joy in some moments and patience in others. Some question my lack of priority on items such as housework and such focus on things like playing with my kids. I know in my heart that the time spent with them will bring great rewards. The mess and dirt will be there tomorrow.
I strive to be the best I can be each day. I pray for guidance and strength to do the next right thing. Faith is my guiding light these days. I feel I have truly grown into my own skin and feel a confidence and peace I have never had. And then life happens......
There is one area that I am struggling for strength, patience and the clarity to do the right thing. Rick and I have been working on our communication for a bit. It is important to us both to provide a loving, happy and stable environment for our kids. We want to give them what we didn't necessarily have and always wanted. To do that we have gone to an outside source to help navigate the way. On Thursday we hit a bump. What I have found is marriage is not the "happily ever after" of fairy tales or movies. It is hard work full of changes, challenges and joys.
Rick and I are very different people with different ways of handling life on life terms. We each have our baggage and expectations. And sometimes they don't match. That is basically what happened to us this past weekend. So we were at a standstill. I felt strongly that I couldn't give in or sacrifice because that would be a sacrifice of myself and all I had work to become. He had his reasons for where he was at. I wasn't sure what to do or how it would resolve itself.
That is when God worked another miracle in my life. Do you know how sometimes a person is placed in your path right when you need them? Well that is what happened to me yesterday. I had an appointment to see the counselor that we were working with. I talked, cried and prayed with her. I was able to see past the hurt, expectations and frustrations of the situation. With Rose's help, I was reminded of some of the most precious characteristics that make up my husband. She helped me remember things that my anger had clouded. Most importantly, she reminded me of looking at the situation through God's eyes and loving my husband as God wants me to.
My fears about losing who I am to solve the problem melted away. Rose had many ideas of how not do that while still loving Rick. She talked about how to nurture my marriage even with the differences. We have a challenge that we have come up against but I need to answer that challenge as a woman of God. Even though my instincts do not always lend themselves to that reaction, my faith must direct me. I have to stop coming from the fear and come from love and faith.
Today I spoke with my sister who is married over 25 years. She shared an experience very similar to what Rick and I are walking through. She told me how it made them better and stronger. In the end, the experience brought them closer as both friends and lovers. It seems to me very few, if any couples get through without a few bumps. The key is how you face the challenges and love each other through them.
I told a friend I was envious of her patience and God-directed response to her husband. I was hurt and angry at the moment. I still envy the ease with which she seems to be able to come from that place. I also know that love is not a problem between Rick and I. We are best friends and we need each other. I might have wavered for a moment and let the fear take over. But as the fog passes, I am confident that we will weather through stronger and better. I just need to remember to follow God's lead and do His will. Then it will work out just fine.
With the kids and all their medical issues, I have no doubt that God has our back. He is holding us in the palm of his hands. I don't know why the kids have the conditions they do but I believe that it is all a part of their journey. Each crisis, obstacle and moment is to help them grow, become stronger and help them to fulfill their calling in this life.
I even believe and have faith on the basics on many things in life including parenting. Maybe that is why I find such joy in some moments and patience in others. Some question my lack of priority on items such as housework and such focus on things like playing with my kids. I know in my heart that the time spent with them will bring great rewards. The mess and dirt will be there tomorrow.
I strive to be the best I can be each day. I pray for guidance and strength to do the next right thing. Faith is my guiding light these days. I feel I have truly grown into my own skin and feel a confidence and peace I have never had. And then life happens......
There is one area that I am struggling for strength, patience and the clarity to do the right thing. Rick and I have been working on our communication for a bit. It is important to us both to provide a loving, happy and stable environment for our kids. We want to give them what we didn't necessarily have and always wanted. To do that we have gone to an outside source to help navigate the way. On Thursday we hit a bump. What I have found is marriage is not the "happily ever after" of fairy tales or movies. It is hard work full of changes, challenges and joys.
Rick and I are very different people with different ways of handling life on life terms. We each have our baggage and expectations. And sometimes they don't match. That is basically what happened to us this past weekend. So we were at a standstill. I felt strongly that I couldn't give in or sacrifice because that would be a sacrifice of myself and all I had work to become. He had his reasons for where he was at. I wasn't sure what to do or how it would resolve itself.
That is when God worked another miracle in my life. Do you know how sometimes a person is placed in your path right when you need them? Well that is what happened to me yesterday. I had an appointment to see the counselor that we were working with. I talked, cried and prayed with her. I was able to see past the hurt, expectations and frustrations of the situation. With Rose's help, I was reminded of some of the most precious characteristics that make up my husband. She helped me remember things that my anger had clouded. Most importantly, she reminded me of looking at the situation through God's eyes and loving my husband as God wants me to.
My fears about losing who I am to solve the problem melted away. Rose had many ideas of how not do that while still loving Rick. She talked about how to nurture my marriage even with the differences. We have a challenge that we have come up against but I need to answer that challenge as a woman of God. Even though my instincts do not always lend themselves to that reaction, my faith must direct me. I have to stop coming from the fear and come from love and faith.
Today I spoke with my sister who is married over 25 years. She shared an experience very similar to what Rick and I are walking through. She told me how it made them better and stronger. In the end, the experience brought them closer as both friends and lovers. It seems to me very few, if any couples get through without a few bumps. The key is how you face the challenges and love each other through them.
I told a friend I was envious of her patience and God-directed response to her husband. I was hurt and angry at the moment. I still envy the ease with which she seems to be able to come from that place. I also know that love is not a problem between Rick and I. We are best friends and we need each other. I might have wavered for a moment and let the fear take over. But as the fog passes, I am confident that we will weather through stronger and better. I just need to remember to follow God's lead and do His will. Then it will work out just fine.
Wednesday, July 6, 2011
Chronic Sucks
The title of this entry is a mantra I share with a friend. Some days it is how I feel about the reality of our life around here. Most moments I stay in the positive and count my blessings and miracles. But there are moments, okay days, where it all just feels overwhelming and unfair. This is when I feel just as the title says and I scream, "CHRONIC SUCKS!". The best part is that God understands, expects and allows me to walk through those feelings. He watches me struggle through and finish my tantrum. Much like I work to do with my kids, he patiently waits as I stomp my feet, scream and cry. Then, when I have exhausted myself, he scoops me up into His arms. He soothes me with His love and tells me all is okay. He reminds He is there and He is my strength. That is the awesomeness of God!
On a side note, we got the results back from Dr. T about Ricks' autoimmune disease testing. Most of the results looked good. There was one, the neutrophils, that was high. I guess these are a marker of inflammation and so this shows that there is some kind of inflammation some where. Dr. T recommends we see a rheumatologist for further testing. He said his tests really look inside the box and with all things considered we need to look inside and outside the box. So we wait to hear from Dr. T about who is the best rheumatologist for Ricks to go to. Then we add another specialist to our list. Ricks is joining Maggie in having his own medical team. The thought of 2 kids and 2 medical teams really exhausts me. As I said, sometimes chronic sucks.
Maggie is so frayed and done feeling sick. She bruised her tummy on the 4th. With all her issues, I thought it best we have the pediatrician check it out. All looked fine but Maggie's anxiety was high. She was scared that they would have to do more medical interventions or IV's. After her appointment, she had a little bit of an emotional breakdown. It was short-lived and we talked our way through it. During the talk, she told me she is sad to feel sick all the time. It makes her worry about what the doctors will do or if they will ever fix it. Talk about breaking a mother's heart! In the end, I calmed her and she moved on.
It seems she is getting worse and there is no resolution in sight. I told her pediatrician today that I feel as if there will never be an answer. That she will just have this head pain for the rest of her life. He looked a bit taken aback but did agree that she may be ill a lot in her life. His recommendation is she has to learn how to be happy and successful in spite of her health. I totally agree but will she still be ill with this infection? He did not seem to think all was hopeless but there are moments when it feels that way. As I said, chronic sucks.
Yes, at this moment, I am feeling a bit more on the half empty side of the table. I just want a moment of health and peace in this family. I want not to have to manage and organize medical appointments, doctors or test results. I want two kids who feel healthy and don't need 5 medicines to help manage the day. I know that my wants are not truly realistic at this time. I hope someday to get there for me, Rick and the kids. I also know that God is waiting for me to finish my tantrum. He is waiting with open arms to remind me of all my blessings and miracles.
On a side note, we got the results back from Dr. T about Ricks' autoimmune disease testing. Most of the results looked good. There was one, the neutrophils, that was high. I guess these are a marker of inflammation and so this shows that there is some kind of inflammation some where. Dr. T recommends we see a rheumatologist for further testing. He said his tests really look inside the box and with all things considered we need to look inside and outside the box. So we wait to hear from Dr. T about who is the best rheumatologist for Ricks to go to. Then we add another specialist to our list. Ricks is joining Maggie in having his own medical team. The thought of 2 kids and 2 medical teams really exhausts me. As I said, sometimes chronic sucks.
Maggie is so frayed and done feeling sick. She bruised her tummy on the 4th. With all her issues, I thought it best we have the pediatrician check it out. All looked fine but Maggie's anxiety was high. She was scared that they would have to do more medical interventions or IV's. After her appointment, she had a little bit of an emotional breakdown. It was short-lived and we talked our way through it. During the talk, she told me she is sad to feel sick all the time. It makes her worry about what the doctors will do or if they will ever fix it. Talk about breaking a mother's heart! In the end, I calmed her and she moved on.
It seems she is getting worse and there is no resolution in sight. I told her pediatrician today that I feel as if there will never be an answer. That she will just have this head pain for the rest of her life. He looked a bit taken aback but did agree that she may be ill a lot in her life. His recommendation is she has to learn how to be happy and successful in spite of her health. I totally agree but will she still be ill with this infection? He did not seem to think all was hopeless but there are moments when it feels that way. As I said, chronic sucks.
Yes, at this moment, I am feeling a bit more on the half empty side of the table. I just want a moment of health and peace in this family. I want not to have to manage and organize medical appointments, doctors or test results. I want two kids who feel healthy and don't need 5 medicines to help manage the day. I know that my wants are not truly realistic at this time. I hope someday to get there for me, Rick and the kids. I also know that God is waiting for me to finish my tantrum. He is waiting with open arms to remind me of all my blessings and miracles.
Sunday, July 3, 2011
Looking Back
I was reminded tonight of some of the places I have been. It was a great reality check of how far I have come in life. The bottom line is that I never knew I could be so blessed and so happy. How grateful I am!
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