We have a weekend and a half until we leave for Dallas! Needless to say my head has been racing! Leading up to surgery is the scariest part and I want to be sure to be as honest as possible about this journey. My hope is that my experience can bring peace or insight of what to expect for parents facing this.
So vulnerable here we go ...
I decided to go talk to a counselor (nice work for shrink) about my fears of surgery and try to get my mind as whole and strong as possible. She gave me a lot of great tips on how to handle certain things, how I can use the nurses at my advantage... But in the end I still left feeling unsettled. This whole time I think I was waiting for acceptance to come by all of a sudden realizing something. Some light bulb would go off to make this easier. Its ironic that the thing giving me peace is the acceptance of how hard this is going to be. Giving in to the realization that there is nothing anyone can say or do that will really make this easier. No one word or action that can take this away. The hard reality is no matter what, I have to face this and it is going to be hard. The hardest thing I have ever done!
I am not going to sit around and feel sorry for Hudson, Matt or myself. Matt and I have decided keeping our body and mind healthy and strong is the best thing. We have starting working out together not because I want to lose weight or even care right now what I look like. It gets the nervous energy out of me, helps me sleep better and endorphins don't hurt either. I am trying to do whatever I can to prepare myself and trying to keep my head up. Plus it makes us feel like even more of a team.
I am so glad I have found peace and acceptance. I really thought I wasn't going to get there. Of course I feel that way right now. Tomorrow could be different. Oh... the cranio coaster you are one wild ride.
If I had to put a positive spin on this journey I would say I honestly ... I am learning so much about myself and what I am made of, Matt and I have grown closer together and are a stronger couple. I appreciate and love Hudson so much everyday and take nothing for granted, its given me a new perspective on being a mom, melts my heart seeing Matt take on his role as such a strong father. I now know without a doubt that our family can make it through anything. That this won't be the last thing that challenges us, thats life. No matter what life throws at us we will work through it together, hand in hand.
Wednesday, November 30, 2011
Wednesday, November 23, 2011
Buck Up!
Today was Hudsons lab work and procrit injection. Matt went to the last one and knowing how squeamish I am with needles combined the difficulty of seeing your baby in pain, graciously said you don't need to go to these appointments. At first, I had a sigh of relief that to be let off the hook. Matt is so incredibly strong and doesn't flinch when it comes to hospitals. In fact he is a first aid responder. If anything should happen medically at work he would come to the rescue. Yep ladies, I've got a hero on my hands.
But the more I got to thinking about it... I shouldn't let myself off the hook. I need to step up and do the things that make me scared, squeamish, sad ... if Hudson needs me I need to be there. Its not about me or how I feel this is about Hudson. It doesn't matter how scared I am of needles or how it hurts my soul to hear him in pain, what matters is that I need to be there for him to comfort him and let him know everything is ok, mommies here.
So today was that day. I did not know that they would be doing more tests on him than ever before. In hindsight I may have gone to the next appointment and skipped this one lol. This time they had to draw 6 viles of blood! As the nurses came in and strapped the band around his little arm he looked up at them suddenly with fear knowing what was to come. He kept looking back and forth at them with fear in his eyes. If he could talk I swear he would be bargaining with them saying... I swear I'll be good guys. I will sleep through the night, I take my medicine, I will even officially crawl if you just put down that pokey thing. We can work out a deal ... he he he ehhhhh right guys?! His last officially plee was when he grabbed the nurses hand and gave the biggest puppy dogs eyes I have ever seen. As she said sorry little guy, he knew it was over. He puffed out his lip and gave a wimper of defeat.
Needless to say, 6 viles of blood takes some time. During that time there was a lot of its okay buddy, from me as I stroked his hair and a level of screaming that absolutely broke my heart. I couldn't have felt more helpless. As tears started rolling down my face I looked in his eyes and knew he needed me to buck up. He looked back and forth from me to Matt searching for some relief which neither could provide except just being there and being calm. Matt did save the day by providing binki which did comfort him a bit.
After the blood work was over we had to sit for a loooonnnnng time for them to test his blood before giving him his procrit shot. The shot he wasn't happy with, but in comparison was a walk in the park compared to the lab work.
So we made it through this week of testing. All done with that till... next week. YIKES! At least at that appointment it will just be 1 vile of blood work and procrit.
This was my first exercise in being stronger than you think you are capable of. Although some tears were shed I am happy with my performance. Which a performance it was. Acting like everything is okay, mommy is cool, calm and collected. You are okay baby, mommies here. But hey, he doesn't know that and that's all that matters. Being a mom doesn't mean you are as strong as a rock, just means your baby has to believe you are.
But the more I got to thinking about it... I shouldn't let myself off the hook. I need to step up and do the things that make me scared, squeamish, sad ... if Hudson needs me I need to be there. Its not about me or how I feel this is about Hudson. It doesn't matter how scared I am of needles or how it hurts my soul to hear him in pain, what matters is that I need to be there for him to comfort him and let him know everything is ok, mommies here.
So today was that day. I did not know that they would be doing more tests on him than ever before. In hindsight I may have gone to the next appointment and skipped this one lol. This time they had to draw 6 viles of blood! As the nurses came in and strapped the band around his little arm he looked up at them suddenly with fear knowing what was to come. He kept looking back and forth at them with fear in his eyes. If he could talk I swear he would be bargaining with them saying... I swear I'll be good guys. I will sleep through the night, I take my medicine, I will even officially crawl if you just put down that pokey thing. We can work out a deal ... he he he ehhhhh right guys?! His last officially plee was when he grabbed the nurses hand and gave the biggest puppy dogs eyes I have ever seen. As she said sorry little guy, he knew it was over. He puffed out his lip and gave a wimper of defeat.
Needless to say, 6 viles of blood takes some time. During that time there was a lot of its okay buddy, from me as I stroked his hair and a level of screaming that absolutely broke my heart. I couldn't have felt more helpless. As tears started rolling down my face I looked in his eyes and knew he needed me to buck up. He looked back and forth from me to Matt searching for some relief which neither could provide except just being there and being calm. Matt did save the day by providing binki which did comfort him a bit.
After the blood work was over we had to sit for a loooonnnnng time for them to test his blood before giving him his procrit shot. The shot he wasn't happy with, but in comparison was a walk in the park compared to the lab work.
So we made it through this week of testing. All done with that till... next week. YIKES! At least at that appointment it will just be 1 vile of blood work and procrit.
This was my first exercise in being stronger than you think you are capable of. Although some tears were shed I am happy with my performance. Which a performance it was. Acting like everything is okay, mommy is cool, calm and collected. You are okay baby, mommies here. But hey, he doesn't know that and that's all that matters. Being a mom doesn't mean you are as strong as a rock, just means your baby has to believe you are.
Monday, November 21, 2011
Ah HA!
Last night after my post here I went to the craniokids.org site. Often they are the only people who can really give me comfort b/c they share this experience. One of the moms said something that hit me like a brick to the head. The thing I have been struggling with isn't as much accepting surgery (although that is part of it). But I have felt like my dream of having a "healthy baby" was taken from me.
When I was pregnant I remember people asking do you want a boy or a girl? Or course I would respond I don't care I just want him/her to be healthy. I have always dreamed of being a mom. Picking out what names I would want for them even as a child myself. Imagine what they would look like, what our relationship would be like, how many I want ... I have always known I wanted to be a mom.
I never in my wildest dreams imagined we would be facing this. Part of what I struggle with is my dream turning into a nightmare. My idea of perfect being shattered.
I remember when I was first pregnant and not wanting to get to excited about it. I was worried that if I was too happy it would somehow be taken away. That all my dreams were coming true and it was too good to be true. When I met Hudson it was the greatest moment of my life. I finally let my guard down and let myself be deliriously happy and considered myself the luckiest woman in the world. All my dreams really did come true.
Then just like that, BAM! Wake up call. We are facing surgery and a condition that possibly requires multiple invasive skull surgeries.
I have always felt that my little boy is perfect. He is perfect to me, he is perfect for me. He is everything I dreamed he would be and more. But I have to admit this situation is less than perfect. I would not wish this on anyone. Yes it could be worse... but it could be better. I am going to let go of all these could be, should be, unfair emotions but first I have to acknowledge them.
Hearing all the cranio moms saying they have felt the exact same way, they do feel the same way right now as they themselves are getting geared up for surgery is so comforting. I have received so many we are here for you, we feel your pain emails that means so much to me. They have said these weeks leading up to surgery will be really hard and a roller coaster of emotions.
I want off this ride!!!
Thank you to all the cranio moms out there. I don't know how I would do this without you!
When I was pregnant I remember people asking do you want a boy or a girl? Or course I would respond I don't care I just want him/her to be healthy. I have always dreamed of being a mom. Picking out what names I would want for them even as a child myself. Imagine what they would look like, what our relationship would be like, how many I want ... I have always known I wanted to be a mom.
I never in my wildest dreams imagined we would be facing this. Part of what I struggle with is my dream turning into a nightmare. My idea of perfect being shattered.
I remember when I was first pregnant and not wanting to get to excited about it. I was worried that if I was too happy it would somehow be taken away. That all my dreams were coming true and it was too good to be true. When I met Hudson it was the greatest moment of my life. I finally let my guard down and let myself be deliriously happy and considered myself the luckiest woman in the world. All my dreams really did come true.
Then just like that, BAM! Wake up call. We are facing surgery and a condition that possibly requires multiple invasive skull surgeries.
I have always felt that my little boy is perfect. He is perfect to me, he is perfect for me. He is everything I dreamed he would be and more. But I have to admit this situation is less than perfect. I would not wish this on anyone. Yes it could be worse... but it could be better. I am going to let go of all these could be, should be, unfair emotions but first I have to acknowledge them.
Hearing all the cranio moms saying they have felt the exact same way, they do feel the same way right now as they themselves are getting geared up for surgery is so comforting. I have received so many we are here for you, we feel your pain emails that means so much to me. They have said these weeks leading up to surgery will be really hard and a roller coaster of emotions.
I want off this ride!!!
Thank you to all the cranio moms out there. I don't know how I would do this without you!
Sunday, November 20, 2011
Acceptance
"Acceptance is the acknowledgement of reality as it is, not as we would like it to be. It is our inner nod to the universe that expresses our understanding of our circumstances exactly as they are. When we finally accept, we place ourselves on the starting line of the journey ahead of us and make the mental room for the needed planning."
-Laura Posada
"Acceptance is a person's agreement to experience a situation, to follow a process or condition (often a negative or uncomfortable situation) without attempting to change it, protest, or exit"
- Wikipedia
I have been searching for acceptance. Accepting this feels like surrender which is not something I am accustomed to. Giving up is not in my nature. Accepting the fact that my baby is going to be going through this is just not acceptable. I worry about not only the obvious physical pain, but the emotional distress is something I am really struggling with. The fact that he isn't going to understand and he will be so scared. Learning so much fear at such a young age is just tragic. He is such a happy little boy and the joy to my life. The fact that I can't take this away and protect him from this literally makes me sick. How can I accept this?! I keep picturing the moment where I attempt to surrender him over to the doctors and all I can picture is me running out of the hospital with him.
I of course realize that whether I accept this or not it is reality. All we want as parents is the best lives for our kids. I would do anything to give Hudson the best life possible. I just HATE that this is the only way to do that. I literally wish I could go through the operation for him. I want to protect him. How is it possible that protecting him also means putting him in harms way? Its unnatural.
This is going to shape part of who is going to become. I know that he won't likely remember this. But kids are little sponges. He is going to learn fear, real fear. What does that do to a person at this age?
I understand the definition of acceptance ... the acknowledgement of reality as it is, not as we would like it to be. And I know what I have to do. Surgery is right around the corner. Watching the days slip away and weeks flying by is very scary. I am taking comfort knowing we aren't doing this alone and am so thankful for all the prayers sent our way. Don't forget to say a big one for my little guy on Dec. 14th! And maybe one for mommy and that I don't run out of the hospital with him instead. Yeah, acceptance ... not there yet. I'll work on it.
Love,
Jen
-Laura Posada
"Acceptance is a person's agreement to experience a situation, to follow a process or condition (often a negative or uncomfortable situation) without attempting to change it, protest, or exit"
- Wikipedia
I have been searching for acceptance. Accepting this feels like surrender which is not something I am accustomed to. Giving up is not in my nature. Accepting the fact that my baby is going to be going through this is just not acceptable. I worry about not only the obvious physical pain, but the emotional distress is something I am really struggling with. The fact that he isn't going to understand and he will be so scared. Learning so much fear at such a young age is just tragic. He is such a happy little boy and the joy to my life. The fact that I can't take this away and protect him from this literally makes me sick. How can I accept this?! I keep picturing the moment where I attempt to surrender him over to the doctors and all I can picture is me running out of the hospital with him.
I of course realize that whether I accept this or not it is reality. All we want as parents is the best lives for our kids. I would do anything to give Hudson the best life possible. I just HATE that this is the only way to do that. I literally wish I could go through the operation for him. I want to protect him. How is it possible that protecting him also means putting him in harms way? Its unnatural.
This is going to shape part of who is going to become. I know that he won't likely remember this. But kids are little sponges. He is going to learn fear, real fear. What does that do to a person at this age?
I understand the definition of acceptance ... the acknowledgement of reality as it is, not as we would like it to be. And I know what I have to do. Surgery is right around the corner. Watching the days slip away and weeks flying by is very scary. I am taking comfort knowing we aren't doing this alone and am so thankful for all the prayers sent our way. Don't forget to say a big one for my little guy on Dec. 14th! And maybe one for mommy and that I don't run out of the hospital with him instead. Yeah, acceptance ... not there yet. I'll work on it.
Love,
Jen
Tuesday, November 15, 2011
Unconditional Love
"Being deeply loved by someone gives you strength, while loving someone deeply gives you courage."
-LaoTzu
The day that I looked into his eyes was the day I discovered what unconditional love means. I feel so blessed to be lucky enough to feel something so real and pure. I would do anything to protect that, to protect him. We are 4 weeks away from surgery and I have realized its time to get strong.
When we first found out about our sons diagnosis we felt very scared, alone and helpless. We had never heard the word craniosynostosis before, we couldn't pronounce it, we didn't know anyone that had ever been through it. Honestly I felt a little ashamed in the beginning and wanted to hide it. I was terrified of the surgery! It hurt me when people found out and started studying his head looking for the imperfection. My whole life I have been aiming for perfection in anything I do (although Im FAR from perfect), I felt like a failure.
Along this journey we have realized we are anything but alone. We are so incredibly overwhelmed by all the love and support from family, friends, strangers ... THANK YOU. Many of you have had a huge impact on how I have gotten this far. I have started to see that maybe this happened so that I can make an impact on craniosynostosis awareness and help other families. I felt we made headway this last Friday at the benefit, Chicks Dig Scars. Thank you so much for coming out, for your donations and most importantly your love and support. It exceeded our expectations and I am so happy to have that memory to take with us to Dallas. We are so incredibly blessed to have such amazing people in our lives!
Several people have said how strong I am. Honestly that always throws me b/c I have been called a lot of things but strong has never been one of them. I have always been the one being taken care of, kind of a scared little girl. But now I have someone who really needs me. Recently I have realized it doesn't matter who you have been in the past, but what you are capable of being. By being strong for him he will find comfort that everything is going to be okay. I am starting to dig deep and be what he needs me to be. I love him so incredibly much I would do anything for him. I now know what loving unconditionally really truly means, being willing to do anything and loving someone no matter what the cost or sacrifice. He is going to make it through this and so will we. This will make all 3 of us stronger. Nothing has ever come easy for Matt and I but it has always been worth the fight. No surprise that this will be the same.
Good thing we are fighters!
-LaoTzu
The day that I looked into his eyes was the day I discovered what unconditional love means. I feel so blessed to be lucky enough to feel something so real and pure. I would do anything to protect that, to protect him. We are 4 weeks away from surgery and I have realized its time to get strong.
When we first found out about our sons diagnosis we felt very scared, alone and helpless. We had never heard the word craniosynostosis before, we couldn't pronounce it, we didn't know anyone that had ever been through it. Honestly I felt a little ashamed in the beginning and wanted to hide it. I was terrified of the surgery! It hurt me when people found out and started studying his head looking for the imperfection. My whole life I have been aiming for perfection in anything I do (although Im FAR from perfect), I felt like a failure.
Along this journey we have realized we are anything but alone. We are so incredibly overwhelmed by all the love and support from family, friends, strangers ... THANK YOU. Many of you have had a huge impact on how I have gotten this far. I have started to see that maybe this happened so that I can make an impact on craniosynostosis awareness and help other families. I felt we made headway this last Friday at the benefit, Chicks Dig Scars. Thank you so much for coming out, for your donations and most importantly your love and support. It exceeded our expectations and I am so happy to have that memory to take with us to Dallas. We are so incredibly blessed to have such amazing people in our lives!
Several people have said how strong I am. Honestly that always throws me b/c I have been called a lot of things but strong has never been one of them. I have always been the one being taken care of, kind of a scared little girl. But now I have someone who really needs me. Recently I have realized it doesn't matter who you have been in the past, but what you are capable of being. By being strong for him he will find comfort that everything is going to be okay. I am starting to dig deep and be what he needs me to be. I love him so incredibly much I would do anything for him. I now know what loving unconditionally really truly means, being willing to do anything and loving someone no matter what the cost or sacrifice. He is going to make it through this and so will we. This will make all 3 of us stronger. Nothing has ever come easy for Matt and I but it has always been worth the fight. No surprise that this will be the same.
Good thing we are fighters!
Monday, November 14, 2011
Wednesday, November 2, 2011
Collectors Items ... Hospital Bracelets?
We have been guilty of wanting to hold onto every little thing related to Hudson ... like many parents fall into. Keeping even the little things makes you feel like you can hold on to those cherished, fleeting moments. Yep ... HORDING! I have always been one to throw away everything, until becoming a parent. Its a sickness! I remember when we got his first hospital bracelet we said we better keep this for the baby book. Even the second, third. But now we have a growing collection of hospital bracelets and its time to start tossing.
He had his first round of blood work today, poooorrr baby. We met with the hematologist and had his first round of blood work today. We will be having appointments once a week to give him shots of procrit to increase his blood cells. Then they draw blood to test that the procrit is working. A very important step leading into surgery so he doesn't loose too much blood. We will also be giving him iron supplements. This is really happening soon! Surgery is 6 weeks from today. Man my fingers just stuttered as I tried to type 6 months vs. 6 WEEKS.
As I picked Hudson up from daycare all the kids gave him hugs and kisses goodbye. Although Hudson is the little super star of daycare, this was extra special treatment today. It melted my heart to know they all knew he had a rough day and although I couldn't be there to comfort him that he was in great company. Those kids LOVE him.
That is something else we have been collecting... lots of love and support. THANK YOU so much! I can't tell you how much it means to us to have your support. Family, friends, co-workers and strangers!
We will be surrounded by everyone in one big room very soon due to the benefit next Friday.
We are really looking forward to seeing everyone there! I plan on collecting lots of hugs that day and taking them with me to Dallas to give to Hudson. It will be so nice to have that memory to reflect on when we are so far away from everyone.
Lots of Love back at cha!
The Ravens
He had his first round of blood work today, poooorrr baby. We met with the hematologist and had his first round of blood work today. We will be having appointments once a week to give him shots of procrit to increase his blood cells. Then they draw blood to test that the procrit is working. A very important step leading into surgery so he doesn't loose too much blood. We will also be giving him iron supplements. This is really happening soon! Surgery is 6 weeks from today. Man my fingers just stuttered as I tried to type 6 months vs. 6 WEEKS.
As I picked Hudson up from daycare all the kids gave him hugs and kisses goodbye. Although Hudson is the little super star of daycare, this was extra special treatment today. It melted my heart to know they all knew he had a rough day and although I couldn't be there to comfort him that he was in great company. Those kids LOVE him.
That is something else we have been collecting... lots of love and support. THANK YOU so much! I can't tell you how much it means to us to have your support. Family, friends, co-workers and strangers!
We will be surrounded by everyone in one big room very soon due to the benefit next Friday.
We are really looking forward to seeing everyone there! I plan on collecting lots of hugs that day and taking them with me to Dallas to give to Hudson. It will be so nice to have that memory to reflect on when we are so far away from everyone.
Lots of Love back at cha!
The Ravens
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