Knowing something is right in your heart does not make it easy. I am thankful though, that I have had the courage in my life to leap. I actually think it's kind of my thing. Whenever God has presented me with a path, I have had an indescribable ability to just believe. Looking back on my life I realize that an incredible sense of peace has always accompanied those biggest decisions.
Lee and I wanted to have a biological baby. We wanted to try surrogacy. It wasn't right. We knew God had a plan. We knew we would adopt our perfect baby. We held hands and we believed.
I hate the process of adoption. It's horrible. It's confusing. It's painful. It's emotional beyond understanding. It's exhausting. It's scary. No, wait, it's terrifying. It's a roller coaster. It's frustrating. It's not fair. It's misunderstood. It's expensive. It's really hard.
It's right. It's our Good. It's amazing.
In less than six weeks, Lee and I could be holding our baby in our arms. We've been chosen. I am already truly, madly, deeply in love with this baby. He holds a place in my heart that is growing bigger every day. He already brings unexpected smiles to my face out of the blue.
I have always believed there was good in my journey. I have always believed God had a plan. I never even dreamed I would be so blessed to get to experience so much of the good.
I'm all in on this. I'm more scared than I have ever been. My heart feels raw from the journey. My instinct is to raise the walls and detach from the experience until it seems safe. I can't though. I deserve to experience every part of this process. It is all part of the future me. All of my leaps have brought me to this point. I truly, madly, deeply believe in the good.
Saturday, September 5, 2015
Thursday, September 3, 2015
A Truly Trying Trial
Hope
Joy
Hope
Anticipation
Hope
These feelings were overwhelming for Lee and me as we started the Anti-IL5 trial. Our time had come! It was finally happening! I was on deck to get the treatment I have NEEDED for so long. We really didn't even hesitate. We knew in our hearts and our minds it was right. This trial was a gift. It was the gift of our future together. It was our All for Good.
Sixty Weeks
We believed. We hoped. We anticipated the good. We reveled in the joy that came with the hope.
We had NO IDEA it would be so hard.
Appointments. Disasterous & massive blood draws. Exhausting and intense tests. Paperwork. Vomiting. Nausea. Debilitating headaches. Tremors. Pain. Muscles cramps. Bone pain. Electric jolts of pain. Fevers. Tears. Dizziness. More vomiting. And more vomiting.
Hope
Overflowing love and care from my husband, my rock.
Then,
we saw the end.
Hope
In less than two months the trial will be complete. The pharmaceutical company will provide the perfect dose of the treatment for me. Overall, my lung function is better than it has been in years, many many years. Lee and I are closer than ever. We are stronger than ever. We see the light at the end of the tunnel. We've almost made it. My body has fought every single minute of every single day. We have hope in the light. My fight is less than two months away from the gift of our future. My fight is less than two months away from the gift more good days than bad.
I am so thankful for all that has brought me to the good that awaits our lives!
Joy
Hope
Anticipation
Hope
These feelings were overwhelming for Lee and me as we started the Anti-IL5 trial. Our time had come! It was finally happening! I was on deck to get the treatment I have NEEDED for so long. We really didn't even hesitate. We knew in our hearts and our minds it was right. This trial was a gift. It was the gift of our future together. It was our All for Good.
Sixty Weeks
We believed. We hoped. We anticipated the good. We reveled in the joy that came with the hope.
We had NO IDEA it would be so hard.
Appointments. Disasterous & massive blood draws. Exhausting and intense tests. Paperwork. Vomiting. Nausea. Debilitating headaches. Tremors. Pain. Muscles cramps. Bone pain. Electric jolts of pain. Fevers. Tears. Dizziness. More vomiting. And more vomiting.
Hope
Overflowing love and care from my husband, my rock.
Then,
we saw the end.
Hope
In less than two months the trial will be complete. The pharmaceutical company will provide the perfect dose of the treatment for me. Overall, my lung function is better than it has been in years, many many years. Lee and I are closer than ever. We are stronger than ever. We see the light at the end of the tunnel. We've almost made it. My body has fought every single minute of every single day. We have hope in the light. My fight is less than two months away from the gift of our future. My fight is less than two months away from the gift more good days than bad.
I am so thankful for all that has brought me to the good that awaits our lives!
Tuesday, September 1, 2015
I lost my voice
Wow! It is hard to believe that it has been over a YEAR since I've written.
All I can say is that I felt as though I lost my voice. I could not put my experiences, feelings, or even thoughts into words. I wasn't in a place to process... well, anything really. As therapeutic as writing this blog has been for me, I guess I just needed a break.
A lot has happened in a year.
I've been feeling the urge to write again. I have that familiar need to save my thoughts. I'm ready to put the past year into words.
All I can say is that I felt as though I lost my voice. I could not put my experiences, feelings, or even thoughts into words. I wasn't in a place to process... well, anything really. As therapeutic as writing this blog has been for me, I guess I just needed a break.
A lot has happened in a year.
I've been feeling the urge to write again. I have that familiar need to save my thoughts. I'm ready to put the past year into words.
Friday, August 15, 2014
Seeing the Rainbow
I’m pretty sure this has been the hardest back to school
week I’ve ever tried to push through. The pain has been unrelenting. I don’t
even know how to describe it. It has been constant and exhausting. I have no
idea how I will make it through five regular work days next week. I’m
overwhelmed with those horrible feelings of not doing my job like I want and
not being a helpful or present colleague. It’s beyond exhausting to “pretend”
through each day just trying to seem okay.
I pray this flare will subside and the pain will ease….. soon.
On top of all that comes with “back to school” we’ve also
been dealing with a sort of loss. Our dream to have a baby, our own, biological
baby, isn’t going to happen. All I can write at this point is that it hurts.
It’s a deep, awful, hurt. I know though, that it is right. I know we will
grow stronger together through this, but I know it will take time.
As if that isn’t quite enough for one little week, we’ve
known something has been going on with my labs. We’ve known it must not be
good. The news was quite different than we expected. A nurse I do not know
called right after dismissal Wednesday and said she needed to schedule an
appointment for me with Dr. Kern because they think I might have chronic kidney
disease. There was no more information. She scheduled the appointment for
September 5th and said good-bye.
That’s a load to drop a person in passing. The prognosis for
chronic kidney disease isn’t exactly full of hope. Thinking back, I’m wondering
why this nurse even mentioned it. It’s not Dr. Olson’s style to discuss bad
possibilities before we know more. My mind has been all over the place. One
minute I’m scared and thinking about what this could mean for our future. The
next minute I’m angry and frustrated. The next minute I’m ready to fight it
with all I am.
Right now, I know that all I can deal with is what I know.
Getting through each day in pain is enough. I know that I am loved. I know that
we can and will rise up and fight hard to beat any obstacle my body or this
world presents. I also know that as hard as it has been to get through this
week, I can still see the rainbow. I have been given the gift of 23 beautiful
second graders who need me this year. They are my reminder that I am needed and
I have a lot more to do before this body is finished.
Friday, August 8, 2014
is it really the "best policy"
I'll start by admitting that I'm not in a good state of mind. I think I'm feeling hurt.... by my hopes.
Two months. I had a lot of hope wrapped in those two summer months.
Most people would think two months sounds like an incredibly long time to rest, build strength, and get better. Sitting here in bed tonight, I'm exhausted, overwhelmed with pain, and reflecting on the week. That doesn't make for a very good combination. I feel like this summer was a joke or even a bad prank. I don't even have students yet and I'm barely fighting my way through the work days. I should be so much better than this. After all the effort, the medicine, the labwork and tests, the days at National Jewish, the intense focus on nothing but getting stronger and healthier, I should be, well, "stronger & healthier". Much stronger & healthier. I shouldn't be fighting back tears in a meeting because of the radiating pain shooting through my legs and arms. I shouldn't be so exhausted that I feel like my body will crumble. I shouldn't feel the overwhelming need, yes NEED to lie to people when they ask how I'm feeling. I should be strong and healthy enough to get through a day without wondering how it's going to happen.
So no, I'd have to say that I'm realizing honesty might not be the best policy for me. I don't feel better when I'm open and honest about how I'm doing. I don't feel relief when I admit the pain I'm experiencing. I don't feel better when I tell about my latest test or lab results. I feel like a burden. I feel like a failure. I feel whiny. I feel weak. I feel lazy. I feel incompetent. I feel like a disappointment. I feel annoying. I feel alone.
I hope one day I'll know what it's like to be well. I truly believe those days are around the corner. I believe it WILL happen. Today though, I'm hurting. I'm feeling defeated by my body. I'm struggling to see how I'll even make it through Monday, much less make it through all of next week. I'm struggling to envision how I will make it through Project Baby Rambo. How will I make it through another year if I'm part of the 50% in the clinical trial that doesn't get the IL5 treatment?
How can I pick up the pieces of myself, stand up, smile, and do what I need to do? Pain is so destructive. I pray that I can focus on my faith in the Grace of God and push through. I pray that this pain is a flare and it will ease soon. I pray for stronger and healthier days in which it will be easy to be honest.
Two months. I had a lot of hope wrapped in those two summer months.
Most people would think two months sounds like an incredibly long time to rest, build strength, and get better. Sitting here in bed tonight, I'm exhausted, overwhelmed with pain, and reflecting on the week. That doesn't make for a very good combination. I feel like this summer was a joke or even a bad prank. I don't even have students yet and I'm barely fighting my way through the work days. I should be so much better than this. After all the effort, the medicine, the labwork and tests, the days at National Jewish, the intense focus on nothing but getting stronger and healthier, I should be, well, "stronger & healthier". Much stronger & healthier. I shouldn't be fighting back tears in a meeting because of the radiating pain shooting through my legs and arms. I shouldn't be so exhausted that I feel like my body will crumble. I shouldn't feel the overwhelming need, yes NEED to lie to people when they ask how I'm feeling. I should be strong and healthy enough to get through a day without wondering how it's going to happen.
So no, I'd have to say that I'm realizing honesty might not be the best policy for me. I don't feel better when I'm open and honest about how I'm doing. I don't feel relief when I admit the pain I'm experiencing. I don't feel better when I tell about my latest test or lab results. I feel like a burden. I feel like a failure. I feel whiny. I feel weak. I feel lazy. I feel incompetent. I feel like a disappointment. I feel annoying. I feel alone.
I hope one day I'll know what it's like to be well. I truly believe those days are around the corner. I believe it WILL happen. Today though, I'm hurting. I'm feeling defeated by my body. I'm struggling to see how I'll even make it through Monday, much less make it through all of next week. I'm struggling to envision how I will make it through Project Baby Rambo. How will I make it through another year if I'm part of the 50% in the clinical trial that doesn't get the IL5 treatment?
How can I pick up the pieces of myself, stand up, smile, and do what I need to do? Pain is so destructive. I pray that I can focus on my faith in the Grace of God and push through. I pray that this pain is a flare and it will ease soon. I pray for stronger and healthier days in which it will be easy to be honest.
Tuesday, August 5, 2014
working on perception
So much of life is impacted by perception. I've always heard that negativity breeds more negativity. Well, on the flip side, it must be true that positivity breeds more positivity ~ right?
Yesterday, my body scared me. I was sitting and when I tried to get up my legs simply didn't work. It's hard to explain. From the hips down my legs felt numb and weak at the same time. After several minutes there was a deep aching throughout both legs. It was intense and unfamiliar. I felt helpless and confused. It happened again in one leg a few hours later.
Today I had an appointment with Dr. Round, my neurologist. I'm so thankful for my wonderful doctors. He is so knowledgeable and caring. He explained that the "episode" with my legs along with the pain I've continued to have in my bones and joints is neuropathy. He believes the symptoms are worsening because the Churg Strauss is progressing. The unfortunate news is that there is nothing I can take to make it better right now. He has high hopes that the IL5 treatment will be the key to slowing the disease and stopping the pain. It doesn't help me much now, but at least it's something to look forward to. For now, he increased my Keppra dosage in hopes it will alleviate some of the pain and other neurological problems. He certainly didn't give me good news today, but he provided solid information which is always good.
He also gave me powerful advice. Until I am able to start the IL5, he said the best thing I can do for my body is to rest. A lot. As much as possible. It sounds so simple. The problem is that in my mind, rest = lazy. It sounds crazy, but that is ingrained in me. When I rest, no matter how terrible I feel, my mind overflows with all the "things" I feel like I should be doing. Lee has helped me immensely in this area, but it is still such a struggle. Even now, I am hearing Dr. Round's voice in my head, "The only way you will get through teaching, IVF, & getting into the IL5 study is by taking serious time to let your body rest. Your body is fighting against itself constantly. You need to give it a break and understand that you aren't like everyone else." How odd is it that I feel like he told me I need to climb Mt. Everest? I am thankful there is something I can do to help me make it through these challenges. I am uneasy about what I'll have to let go of on the way.
Yesterday, my body scared me. I was sitting and when I tried to get up my legs simply didn't work. It's hard to explain. From the hips down my legs felt numb and weak at the same time. After several minutes there was a deep aching throughout both legs. It was intense and unfamiliar. I felt helpless and confused. It happened again in one leg a few hours later.
Today I had an appointment with Dr. Round, my neurologist. I'm so thankful for my wonderful doctors. He is so knowledgeable and caring. He explained that the "episode" with my legs along with the pain I've continued to have in my bones and joints is neuropathy. He believes the symptoms are worsening because the Churg Strauss is progressing. The unfortunate news is that there is nothing I can take to make it better right now. He has high hopes that the IL5 treatment will be the key to slowing the disease and stopping the pain. It doesn't help me much now, but at least it's something to look forward to. For now, he increased my Keppra dosage in hopes it will alleviate some of the pain and other neurological problems. He certainly didn't give me good news today, but he provided solid information which is always good.
He also gave me powerful advice. Until I am able to start the IL5, he said the best thing I can do for my body is to rest. A lot. As much as possible. It sounds so simple. The problem is that in my mind, rest = lazy. It sounds crazy, but that is ingrained in me. When I rest, no matter how terrible I feel, my mind overflows with all the "things" I feel like I should be doing. Lee has helped me immensely in this area, but it is still such a struggle. Even now, I am hearing Dr. Round's voice in my head, "The only way you will get through teaching, IVF, & getting into the IL5 study is by taking serious time to let your body rest. Your body is fighting against itself constantly. You need to give it a break and understand that you aren't like everyone else." How odd is it that I feel like he told me I need to climb Mt. Everest? I am thankful there is something I can do to help me make it through these challenges. I am uneasy about what I'll have to let go of on the way.
Monday, July 28, 2014
You Just Have to WANT It
"You just have to WANT it."
That quote is from a real estate show on HGTV called Hawaii Life. I'm choosing to apply it to my life rather than dreamy homes in paradise. I have a big list of WANTS that may not have the best odds in the eyes of a realist. My life is a testament to miracles and unlikely situations though, so I'm diving in head first. I'm ready to fight with all I have for my "wants", my dreams.
I want to have a baby. I have come to terms with the fact that I won't get to carry that baby. I get that. I understand that it's going to be a tough road and IVF will be incredibly hard on my body. I understand that there are risks and that my doctors have concerns. I also understand it is expensive and will be stressful. I believe though. I have faith. I have hope. I am optimistic. We believe. We have faith. We have hope. We are optimistic. Lee and I are the strongest team and we are ready to fight for this baby that we already love.
I want to teach. I want to brighten the lives of students, families, and other teachers. I want to embark on things in the classroom without concerns of weakness or illness. I want to be me without being ashamed of revealing medical realities that might make others uncomfortable.
I want to enjoy and support Lee and his basketball team. I want to go to the games and be a helpful supporter of the team.
I want to participate in things - things I enjoy doing. I want to cook, clean, go to concerts, take Jackson to the park, make friends and spend time with friends.
I want to do what is right for my health. I want to accept my limitations and be at peace with the things my body needs. I want to live fully with no regrets.
Simply put, I want it all. We want it all. Together, I know we are going to continue to live beautifully. :)
That quote is from a real estate show on HGTV called Hawaii Life. I'm choosing to apply it to my life rather than dreamy homes in paradise. I have a big list of WANTS that may not have the best odds in the eyes of a realist. My life is a testament to miracles and unlikely situations though, so I'm diving in head first. I'm ready to fight with all I have for my "wants", my dreams.
I want to have a baby. I have come to terms with the fact that I won't get to carry that baby. I get that. I understand that it's going to be a tough road and IVF will be incredibly hard on my body. I understand that there are risks and that my doctors have concerns. I also understand it is expensive and will be stressful. I believe though. I have faith. I have hope. I am optimistic. We believe. We have faith. We have hope. We are optimistic. Lee and I are the strongest team and we are ready to fight for this baby that we already love.
I want to teach. I want to brighten the lives of students, families, and other teachers. I want to embark on things in the classroom without concerns of weakness or illness. I want to be me without being ashamed of revealing medical realities that might make others uncomfortable.
I want to enjoy and support Lee and his basketball team. I want to go to the games and be a helpful supporter of the team.
I want to participate in things - things I enjoy doing. I want to cook, clean, go to concerts, take Jackson to the park, make friends and spend time with friends.
I want to do what is right for my health. I want to accept my limitations and be at peace with the things my body needs. I want to live fully with no regrets.
Simply put, I want it all. We want it all. Together, I know we are going to continue to live beautifully. :)
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