So my last post was a bit debbie downer, not like me but hey I am human! That is also what I have been wanting to tell the people who have been surprised when I am not always usual self. I am just human. I think since we have known about this for awhile people think that you have had plenty of time to adjust and just move on. As much as I wished it worked that way it doesn't. Especially since we can't move on yet and we are in limbo until surgery. I think part of the stress is also jut part of being a mom and add a working mom on top of that.
So now I am just keepin my head up and dealing with each day and all the stresses that come with it. You really just have to laugh sometimes when you look around and see that everything is a mess. Laughing does keep you from crying anyway and its much more fun.
I know I have said this before but it always amazes me how I can have the worst day and it vanishes as soon as I hold my lil boy. He really is such a strong life force. You can't help but smile when you are with him. He is so amazing and easily the best thing I have ever done.
Wednesday, August 31, 2011
Wednesday, August 24, 2011
Overwhelmed
Overwhelmed is the word of the week. Since I was so consumed with everything going on with Hudson, now everything else is falling apart around me and I can't seem to catch up. Just because you have a lot going on doesn't mean the rest of the world stops.
Juggling being a mom, work, house responsibilities, along with the every day stresses has just got me running like a hamster on a wheel. But it seems the faster I try to run the more I seem to miss. By the end of the day I am totally exhausted. I just can't be everything to everyone and I hate disappointing anyone. Unfortunately I know I have.
I am going to try to focus on one thing at a time and just hope for some forgiveness and understanding. I will have to work this weekend to catch up. One thing at a time, one thing at a time.
Juggling being a mom, work, house responsibilities, along with the every day stresses has just got me running like a hamster on a wheel. But it seems the faster I try to run the more I seem to miss. By the end of the day I am totally exhausted. I just can't be everything to everyone and I hate disappointing anyone. Unfortunately I know I have.
I am going to try to focus on one thing at a time and just hope for some forgiveness and understanding. I will have to work this weekend to catch up. One thing at a time, one thing at a time.
Thursday, August 18, 2011
Happy Ending
Recently I had a fortune cookie that said something to the effect of taking time for yourself will allow you to be more productive. Not that I put much weight into fortune cookies, but its interesting when things work out like that...
It really is amazing how when you take some time for yourself how different your outlook is. So my new strategy is working! The week started out pretty awful and is ending great!
Simple things like working out, reading for fun and not research, and NOT focusing on cranio but focusing on Hudson has made all the difference. A cherry on top was having a happy hour with my amazing co-workers. Thanks ladies!!! Thanks to my amazing husband who is always tell me, slow down babe, slow down. You don't even know how much I need that. Now I am curling up to one of my favorite movies Practical Magic to top it all off.
I am well on my way to worrying the "normal" amount that a mother should about her 5 month old baby; not worrying about my 5 month old baby with cranio.
What a great ending to the week! Happy Thursday everyone!
Love,
Jen
It really is amazing how when you take some time for yourself how different your outlook is. So my new strategy is working! The week started out pretty awful and is ending great!
Simple things like working out, reading for fun and not research, and NOT focusing on cranio but focusing on Hudson has made all the difference. A cherry on top was having a happy hour with my amazing co-workers. Thanks ladies!!! Thanks to my amazing husband who is always tell me, slow down babe, slow down. You don't even know how much I need that. Now I am curling up to one of my favorite movies Practical Magic to top it all off.
I am well on my way to worrying the "normal" amount that a mother should about her 5 month old baby; not worrying about my 5 month old baby with cranio.
What a great ending to the week! Happy Thursday everyone!
Love,
Jen
Wednesday, August 17, 2011
Just Breathe
So last week I thought I had a pretty good handle on all this. I had come up with some new things to distract me and it seemed to be working really well! I have been BUSY:
But this week my anxiety got out of control. I got so overwhelmed I had to remind myself to breathe. Just breathe. I realized my strategy of distraction wasn't distraction at all but obsession. Every second of every day revolved around cranio. I guess subconsciously I thought by doing all this I was gaining control over something I have no control of.
I don't want to wait 6 months for surgery and I don't want the surgery to be tomorrow either. I want to exist in a place where there is no time. At least no time where he has to go through this surgery. I just don't want to do it at all! It makes me want to scream!
So ... new strategy. I'm going to have at least 3 days that I do nothing related to cranio. I have started reading a book before going to sleep instead of being internet researching cranio. I'm going to start working out to get rid of some of this nervous energy. And focus on loving my baby and family. Doing fun things together and building awesome memories.
I realize the bad days are still going to come and there really is nothing I can do about it. I have to go through this process whether I like it or not. I'm trying to focus on the things I do have control over.
- Working on a Chicks Dig Scars Logo.
- A "We're On The Other Side" shirt for later.
- Researching Cranio
- Doing this blog
- Planning for Dallas in October
- Thinking of all the ways I can make the surgery easier for him.
- Whether its patting his leg when I put him to sleep instead of stroking his hair, or using toys that have sounds more so when his eyes are swollen shut he can still find comfort in his toys...
But this week my anxiety got out of control. I got so overwhelmed I had to remind myself to breathe. Just breathe. I realized my strategy of distraction wasn't distraction at all but obsession. Every second of every day revolved around cranio. I guess subconsciously I thought by doing all this I was gaining control over something I have no control of.
I don't want to wait 6 months for surgery and I don't want the surgery to be tomorrow either. I want to exist in a place where there is no time. At least no time where he has to go through this surgery. I just don't want to do it at all! It makes me want to scream!
So ... new strategy. I'm going to have at least 3 days that I do nothing related to cranio. I have started reading a book before going to sleep instead of being internet researching cranio. I'm going to start working out to get rid of some of this nervous energy. And focus on loving my baby and family. Doing fun things together and building awesome memories.
I realize the bad days are still going to come and there really is nothing I can do about it. I have to go through this process whether I like it or not. I'm trying to focus on the things I do have control over.
Friday, August 12, 2011
Cranio Angels
"The Divine Kiss"
by Cindy Scofield
One day God was taking roll of all the precious souls who were eagerly awaiting their assignments on earth. The angels were helping these innocents to organize themselves and to prepare for the lifelong task at hand. Each of these precious children had to be perfectly placed so that they could achieve their true life tasks. A small group anxiously discussed where they thought they would end up. One by one, they received their purposes and were sent down to where they were needed. One was sent to a rich family and needed to use his resources to someday help a person in need. Another was sent to a poor family and needed to use his wellspring of happiness to cheer those around him. A little girl was sent to give her parents hope in all the heartache they had endured. Finally, a little boy was all that was left. Fearing that he did not have a place, he started to cry. God asked, “What was wrong my precious one? Since we are in heaven, your burden must be pretty great for you to shed tears.” The little boy explained, “You have given so many children a chance to make a difference in the lives of some special humans. Since I am still here, I fear that I will not have the opportunity to know what it is to be human.” God said, “My child, do not worry. You will have one of the biggest tasks of all. I wanted to send you last so that I could spend some time helping you to understand your true purpose. Your life as a human being will not have an easy start. Your little form will not be perfect, and you will face many uphill battles in your life because of your special conditions. I just want to send you with the knowledge that I have specially chosen you because of your strength of character and your stubbornness of will. I am confident that you will face these challenges head-on, and I know that you will only serve to uplift Me and those around you. You are a chosen one, and I will be right beside you the whole way.” The little boy felt better, but then he began to feel that the burden was too great for his small shoulders. God noticed the concern on that darling face and said, “My child, do not worry over your physical burdens. I am sending you to parents who will seek to make your life comfortable and happy. They are strong people who doubt themselves but will quickly take comfort in your courage. As a family, you will all learn from each other; and in turn, you will touch the lives of everyone else you contact. Please do not worry; you and yours will find plenty of strength in Me. I send you down with My kiss. Let the mark on your head be a constant reminder of this conversation and the love that surrounds you. I will be with you always.” The child arrived pristine to the open arms of his intended parents. In a very short time, God’s promises came true; and a few months later, God kissed that remarkable boy’s head. Since that fateful kiss, this brave little man has given courage, strength, and hope to all those who know his story; and he has only just begun. The angels in heaven rejoice.
Habakkuk 3:19 “The Lord God is my strength, and he will make my feet like hinds feet, and he will make me to walk upon mine high places.”
http://www.thescofieldfamily.com/DivineKiss.html
by Cindy Scofield
One day God was taking roll of all the precious souls who were eagerly awaiting their assignments on earth. The angels were helping these innocents to organize themselves and to prepare for the lifelong task at hand. Each of these precious children had to be perfectly placed so that they could achieve their true life tasks. A small group anxiously discussed where they thought they would end up. One by one, they received their purposes and were sent down to where they were needed. One was sent to a rich family and needed to use his resources to someday help a person in need. Another was sent to a poor family and needed to use his wellspring of happiness to cheer those around him. A little girl was sent to give her parents hope in all the heartache they had endured. Finally, a little boy was all that was left. Fearing that he did not have a place, he started to cry. God asked, “What was wrong my precious one? Since we are in heaven, your burden must be pretty great for you to shed tears.” The little boy explained, “You have given so many children a chance to make a difference in the lives of some special humans. Since I am still here, I fear that I will not have the opportunity to know what it is to be human.” God said, “My child, do not worry. You will have one of the biggest tasks of all. I wanted to send you last so that I could spend some time helping you to understand your true purpose. Your life as a human being will not have an easy start. Your little form will not be perfect, and you will face many uphill battles in your life because of your special conditions. I just want to send you with the knowledge that I have specially chosen you because of your strength of character and your stubbornness of will. I am confident that you will face these challenges head-on, and I know that you will only serve to uplift Me and those around you. You are a chosen one, and I will be right beside you the whole way.” The little boy felt better, but then he began to feel that the burden was too great for his small shoulders. God noticed the concern on that darling face and said, “My child, do not worry over your physical burdens. I am sending you to parents who will seek to make your life comfortable and happy. They are strong people who doubt themselves but will quickly take comfort in your courage. As a family, you will all learn from each other; and in turn, you will touch the lives of everyone else you contact. Please do not worry; you and yours will find plenty of strength in Me. I send you down with My kiss. Let the mark on your head be a constant reminder of this conversation and the love that surrounds you. I will be with you always.” The child arrived pristine to the open arms of his intended parents. In a very short time, God’s promises came true; and a few months later, God kissed that remarkable boy’s head. Since that fateful kiss, this brave little man has given courage, strength, and hope to all those who know his story; and he has only just begun. The angels in heaven rejoice.
Habakkuk 3:19 “The Lord God is my strength, and he will make my feet like hinds feet, and he will make me to walk upon mine high places.”
http://www.thescofieldfamily.com/DivineKiss.html
Thursday, August 11, 2011
Cranio Cap
We got our pirate hat from the Cranio Angel Network (a charitable awareness program providing handmade flower headbands for girls and pirate hats for boys with Craniosynostosis.)
http://www.cranioangelnetwork.com/Cranio_Angel_Network/Welcome.html
I have a video about the amazing mom who does runs this program under the Awareness Tab.
It really brightened my day opening it and I couldn't wait to get it on his adorable little noggin. He is SO cute in it. MWAH baby boy.
It will be really nice after the surgery to put this on him on days that you just want to go to the grocery store without people starring at your babies head. I'm all for awareness but I can imagine that some days you just don't want the looks. I did see a funny shirt for Cranio gear that said "Keep Starring, We Haven't Been Through Enough Yet". Cracked me up but I know people will just look because they are curious. The scar is going to be pretty noticeable before his hair fills in. Another great reason to raise awareness and understanding :)
Great Day!
Jen
Wednesday, August 10, 2011
4 weeks ago
It is exactly 4 weeks ago today that we found out what Craniosynostosis meant and that big word was going to have an enormous impact on our lives.
I will never forget my stomach hitting the floor as the doctor told us surgery was required and described cutting my babies head from ear to ear to reshape his skull. As if this wasn't horrific enough, but that he couldn't even do the surgery and recommended we find Dr. Fearon. That day will forever be imprinted in my mind. Feeling like you can't breathe, can't speak, can't move. I can remember exactly how I felt yet no words can possibly describe it.
I tell you this for all those parents out there who have just been through this. It WILL get better. Only 4 weeks and I feel like the Cranio expert. Although its still surreal at times we have been able to enjoy our baby again. These moments with them are so precious and they grow up so fast it would be a shame not to enjoy every second. A friend of mine, Keri, reminded me, he is still your baby. He is the same boy he was the day before... no different.
Those first couple days I couldn't even do our night time routine that I used to cherish. I had to leave the room constantly crying and leaned on Matt to take over. Being scared consumed me. Hudson would just give me a smile with an its okay mommy look.
I promised myself that would be the last time he would have to give me that look. That I must keep face in front of him. My mom was at my house when I told her about surgery and I could see her eyes start to well up. I said if you are to cry please go in the other room, not in front of Hudson. If I know I am going to cry I put him down and walk away for a moment until I can get it together. She teared up and whispered, "You are a mom".
The best thing I can recommend is research and do more research. Knowledge is power. The more you know the better you can prepare yourself. The craniokids.org has been such a HUGE comfort. You can talk to moms who have been through this or who are in the exact same shoes as you right now. Those ladies are amazing. Many stay on the board years after their kids have had surgery just to support others.
I still wish on a daily basis that I could take his place for the surgery. That I could somehow protect him from all of this. Talking to people who feel the same way you do, no matter how unrealistic or crazy makes the biggest difference. Knowing that people make it on the other side of this all the time and you will too. Maybe a little bumped and bruised even as parents but I don't think you can walk away from this as if it never happened. Then again I don't think you should. You have to learn from every experience whether good or bad. I have to believe there is a reason for everything. Don't know what the reason is right now... but I do know I don't take a second for granted with him.
Love Jen
I will never forget my stomach hitting the floor as the doctor told us surgery was required and described cutting my babies head from ear to ear to reshape his skull. As if this wasn't horrific enough, but that he couldn't even do the surgery and recommended we find Dr. Fearon. That day will forever be imprinted in my mind. Feeling like you can't breathe, can't speak, can't move. I can remember exactly how I felt yet no words can possibly describe it.
I tell you this for all those parents out there who have just been through this. It WILL get better. Only 4 weeks and I feel like the Cranio expert. Although its still surreal at times we have been able to enjoy our baby again. These moments with them are so precious and they grow up so fast it would be a shame not to enjoy every second. A friend of mine, Keri, reminded me, he is still your baby. He is the same boy he was the day before... no different.
Those first couple days I couldn't even do our night time routine that I used to cherish. I had to leave the room constantly crying and leaned on Matt to take over. Being scared consumed me. Hudson would just give me a smile with an its okay mommy look.
I promised myself that would be the last time he would have to give me that look. That I must keep face in front of him. My mom was at my house when I told her about surgery and I could see her eyes start to well up. I said if you are to cry please go in the other room, not in front of Hudson. If I know I am going to cry I put him down and walk away for a moment until I can get it together. She teared up and whispered, "You are a mom".
The best thing I can recommend is research and do more research. Knowledge is power. The more you know the better you can prepare yourself. The craniokids.org has been such a HUGE comfort. You can talk to moms who have been through this or who are in the exact same shoes as you right now. Those ladies are amazing. Many stay on the board years after their kids have had surgery just to support others.
I still wish on a daily basis that I could take his place for the surgery. That I could somehow protect him from all of this. Talking to people who feel the same way you do, no matter how unrealistic or crazy makes the biggest difference. Knowing that people make it on the other side of this all the time and you will too. Maybe a little bumped and bruised even as parents but I don't think you can walk away from this as if it never happened. Then again I don't think you should. You have to learn from every experience whether good or bad. I have to believe there is a reason for everything. Don't know what the reason is right now... but I do know I don't take a second for granted with him.
Love Jen
Monday, August 8, 2011
Cranio Angel Network
I have a new video under the Awareness tab that you should check out. I am so incredibly inspired by story. To turn this into a positive and help other families is so awesome.
I can relate to needing a way to keep her mind focused on something happy.
I plan on doing my part as well to raise awareness and helping other families as well.
Hudson's hat should be at our house any day. Can't wait! After his surgery he is going to be an angel too. I also put the link to her Cranio Angel Network below.
http://www.cranioangelnetwork.com/Cranio_Angel_Network/Welcome.html
I can relate to needing a way to keep her mind focused on something happy.
I plan on doing my part as well to raise awareness and helping other families as well.
Hudson's hat should be at our house any day. Can't wait! After his surgery he is going to be an angel too. I also put the link to her Cranio Angel Network below.
http://www.cranioangelnetwork.com/Cranio_Angel_Network/Welcome.html
Sunday, August 7, 2011
Meeting the Doc
We have our consultation date set to go to Dallas and meet Dr. Fearon for Oct. 10th!
Really excited to meet him in person, yet a little nervous b/c this is all becoming very real. We will get to see the facility and get a full scope of what is going to happen. I feel like each step along the way is filled with so many mixed emotions.
This whole thing is still just so surreal. I keep thinking I am going to wake up and this is all just a bad dream.
I really just wish time would stand still for awhile. But at the same time want this all behind us as soon as possible. Don't know if that makes any sense.
Wish this pit in my stomach would ease up. I'm feeling excited, nervous, scared, apprehensive and anxious! I need to somehow take control of my thoughts. Yoga maybe, lol. I will give anything a try.
Really excited to meet him in person, yet a little nervous b/c this is all becoming very real. We will get to see the facility and get a full scope of what is going to happen. I feel like each step along the way is filled with so many mixed emotions.
This whole thing is still just so surreal. I keep thinking I am going to wake up and this is all just a bad dream.
I really just wish time would stand still for awhile. But at the same time want this all behind us as soon as possible. Don't know if that makes any sense.
Wish this pit in my stomach would ease up. I'm feeling excited, nervous, scared, apprehensive and anxious! I need to somehow take control of my thoughts. Yoga maybe, lol. I will give anything a try.
Thursday, August 4, 2011
My Sunshine
"Children have neither past nor future; they enjoy the present, which very few of us do."
~Jean de la Bruyere
So after feeling pretty low yesterday, I went and picked Hudson up from daycare and just one gummy faced grin from that little boy turned everything around.
It amazes me how I am trying to be strong for him yet he is the one who gives me strength. With one giggle, he makes me realize everything is going to be okay. Within that moment I don't think about anything else but how lucky I am to have him in my life and be his mom.
Last night I sang You Are My Sunshine, which somehow felt more true than ever. I read him just one more book, sang him just one more song and held him a little tighter. This experience makes me cherish every moment and taking nothing for granted. Yep he is going to be one spoiled little boy! LOL!
Its funny how shortly after I found out about his diagnoses I was doing laundry and found my gym clothes. Just a few days earlier my main concerns were getting baby weight off and why this boy doesn't like to sleep! Within a moment everything changed. I am grateful to have a new perspective on whats really important again.
He really is my sunshine
Love,
Jen
~Jean de la Bruyere
So after feeling pretty low yesterday, I went and picked Hudson up from daycare and just one gummy faced grin from that little boy turned everything around.
It amazes me how I am trying to be strong for him yet he is the one who gives me strength. With one giggle, he makes me realize everything is going to be okay. Within that moment I don't think about anything else but how lucky I am to have him in my life and be his mom.
Last night I sang You Are My Sunshine, which somehow felt more true than ever. I read him just one more book, sang him just one more song and held him a little tighter. This experience makes me cherish every moment and taking nothing for granted. Yep he is going to be one spoiled little boy! LOL!
Its funny how shortly after I found out about his diagnoses I was doing laundry and found my gym clothes. Just a few days earlier my main concerns were getting baby weight off and why this boy doesn't like to sleep! Within a moment everything changed. I am grateful to have a new perspective on whats really important again.
He really is my sunshine
Love,
Jen
Wednesday, August 3, 2011
I am also using this blog also for families who are going to be later reading this and going through the same thing. This blog is intended to be informative but also as an outlet for us to cope. We have good and bad days and the way I feel about this changes daily if not hourly or more. Sometimes I may be venting, and rambling. But it feels better to release these emotions. Some days may not be fun to read because that is our reality right now.
I feel my head and heart are in a constant battle. I have to stay positive and strong but also face the reality that this is not going to be easy. I have to be as prepared as possible to that I can be strong for him.
The reality is its going to be almost too much to bear seeing him post-op. His eyes may be swollen shut for days. His head is going to swell to the point he won't be recognizable. He will have a zig zag incision from ear to ear. He is going to be poked and prodded for months leading up to this as well as while he is in the hospital. Many children flinch to the touch after the surgery for a long time not knowing if its going to be a gentle touch or a needle. They have issues sleeping after from post traumatic stress for at least 6 weeks.
My head tells me:
All this doesn't change the fact that I also have to deal with my heart
I realize all l I can do it be as prepared as possible and focus on the things we do have control over:
Keeping him as comfortable and calm as possible by bringing him his favorite music, toys, holding his hand, singing to him, reassuring him and just being there. Waiting 6 months is going to be so hard to have all of this on our shoulders. I can't wait until we are "on the other side" as all my friends on the craniokids.org site say.
Oh Yuck! Well I feel better now. Thanks for letting me get that off my chest.
-Jen
I feel my head and heart are in a constant battle. I have to stay positive and strong but also face the reality that this is not going to be easy. I have to be as prepared as possible to that I can be strong for him.
The reality is its going to be almost too much to bear seeing him post-op. His eyes may be swollen shut for days. His head is going to swell to the point he won't be recognizable. He will have a zig zag incision from ear to ear. He is going to be poked and prodded for months leading up to this as well as while he is in the hospital. Many children flinch to the touch after the surgery for a long time not knowing if its going to be a gentle touch or a needle. They have issues sleeping after from post traumatic stress for at least 6 weeks.
My head tells me:
- How lucky we are that it is something that can be fixed
- This procedure has been done many times before with success
- We have the best doctor we could hope for
- How lucky we are that his development is great!
- Kids recovery so quickly and this will be way harder on us than him
- Soon this will all just be a nightmare and he will go on to lead a normal, happy life
All this doesn't change the fact that I also have to deal with my heart
- My heart breaks that my baby has to go through this at all!
- That he is going to be in pain, scared and not understand
- Why someone so innocent has to go through something so hard
- My baby is learning so much fear and pain at such a young age
- Will this surgery shape who Hudson will become being exposed to something so traumatic so young?
- That this isn't fair. WHY my baby!
- Along with many more thoughts that I don't even want to write
I realize all l I can do it be as prepared as possible and focus on the things we do have control over:
Keeping him as comfortable and calm as possible by bringing him his favorite music, toys, holding his hand, singing to him, reassuring him and just being there. Waiting 6 months is going to be so hard to have all of this on our shoulders. I can't wait until we are "on the other side" as all my friends on the craniokids.org site say.
Oh Yuck! Well I feel better now. Thanks for letting me get that off my chest.
-Jen
Monday, August 1, 2011
Welcome
Thank you for checking out Hudsons blog. I hope you enjoy following along in our journey. We will be posting updates as we go through this crazy process.
We are doing this blog for several reasons:
To keep our family and friends updated
Raise awareness of this rare condition
And of course for Hudson. Right now we are the narrators but this is his story. Someday he will want to share it himself because afterall, Chicks Dig Scars!
Start with Our Story to get the background story.
We are doing this blog for several reasons:
To keep our family and friends updated
Raise awareness of this rare condition
And of course for Hudson. Right now we are the narrators but this is his story. Someday he will want to share it himself because afterall, Chicks Dig Scars!
Start with Our Story to get the background story.
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