October 31, 2010
Fall photo shoot
I use the phrase "photo shoot" loosely because a photo shoot for me consists of my camera, a pumpkin, and my sister jumping and waving her arms frantically behind me trying to get Nate to look at the camera. This was probably one of the last nice days of October and I decided last minute (while Nate was napping to be exact) that we were going to head out to the Old Mill to get some pictures. The sun was literally setting when we got there. But I think it made for some really great light. Here are some of the goodies in no particular order:
County Line Farm
Last year when we took our trip to the pumpkin patch it was cooooold. I remember desperately trying to keep my baby warm.
This year it was actually HOT. I guess that's Chicago weather for you.
Nate really enjoyed the "animal zoo". He loves pointing out all the animals and knows all their sounds. He was even brave enough to pet a calf!
There were no apples to pick. I guess an early frost meant that all apples had to be picked early, so we didn't venture out to the apple orchards. We did enjoy a tractor ride to the pumpkin patch (and by patch I mean a bunch of already picked pumpkins sitting in a dusty field). But it was fun anyway. Didn't get too many good pumpkin pictures here-I really have no idea how to handle the bright, bright sun when taking pictures.
Some rare mommy pics.
I really can not get over how big he is getting. Seriously, where did my baby go?
This year it was actually HOT. I guess that's Chicago weather for you.
Nate really enjoyed the "animal zoo". He loves pointing out all the animals and knows all their sounds. He was even brave enough to pet a calf!
There were no apples to pick. I guess an early frost meant that all apples had to be picked early, so we didn't venture out to the apple orchards. We did enjoy a tractor ride to the pumpkin patch (and by patch I mean a bunch of already picked pumpkins sitting in a dusty field). But it was fun anyway. Didn't get too many good pumpkin pictures here-I really have no idea how to handle the bright, bright sun when taking pictures.
Some rare mommy pics.
I really can not get over how big he is getting. Seriously, where did my baby go?
October 30, 2010
Leaving our mark
I love October.
Fall is hands down my favorite time of year. This morning, the first thing Nate said to me was "Trick or treat!"-he is soooo excited about Halloween and how people "put the candy in the pumpkin". It is way too cute.
But this October has been about way more than leaves changing colors and kids dressing up in costume. This October I really feel like this wonderful group I have been so blessed to become part of, has left our mark. Together, we are doing amazing, amazing things. And I can only see it continuing to grow and reach people each year.
In honor of October being Spina Bifida Awareness month, I created a "flyer" to send out to friends and family that donated to our Walk and Roll as a sort of thank you and a way to educate, update and spread awareness. I hope to do this each and every year in the month of October. Next year I hope to include yellow awareness lapel pins for everyone (I tried to make my own like I did last year but I had a hard time finding a marker that wouldn't bleed on the ribbon).
And this is just ME. I don't even feel like I really did enough.
But together we sold over 700 shirts advocating for SB awareness and joined together thousands of people for a day of prayer. (**Update-the woman I wrote about here has decided to keep her baby! See, AMAZING things!!!)
Thank you to all our friends and family who donated, are helping spreading awareness by sporting a t-shirt , prayed with us and continue to be such an encouragement and source of strength in our lives. We love you.
And to my sb family-being a part of all this amazingness and being able to share our lives with you as well as yours with us has left no doubt in my mind that we are right where we are meant to be. Hugs!!!!
Here is the flyer I sent out:
Fall is hands down my favorite time of year. This morning, the first thing Nate said to me was "Trick or treat!"-he is soooo excited about Halloween and how people "put the candy in the pumpkin". It is way too cute.
But this October has been about way more than leaves changing colors and kids dressing up in costume. This October I really feel like this wonderful group I have been so blessed to become part of, has left our mark. Together, we are doing amazing, amazing things. And I can only see it continuing to grow and reach people each year.
In honor of October being Spina Bifida Awareness month, I created a "flyer" to send out to friends and family that donated to our Walk and Roll as a sort of thank you and a way to educate, update and spread awareness. I hope to do this each and every year in the month of October. Next year I hope to include yellow awareness lapel pins for everyone (I tried to make my own like I did last year but I had a hard time finding a marker that wouldn't bleed on the ribbon).
And this is just ME. I don't even feel like I really did enough.
But together we sold over 700 shirts advocating for SB awareness and joined together thousands of people for a day of prayer. (**Update-the woman I wrote about here has decided to keep her baby! See, AMAZING things!!!)
Thank you to all our friends and family who donated, are helping spreading awareness by sporting a t-shirt , prayed with us and continue to be such an encouragement and source of strength in our lives. We love you.
And to my sb family-being a part of all this amazingness and being able to share our lives with you as well as yours with us has left no doubt in my mind that we are right where we are meant to be. Hugs!!!!
Here is the flyer I sent out:
October 27, 2010
October 26, 2010
And so it continues...
Our wheel chair saga is not over. (Omgosh, is wheelchair one word or two? I'm pretty sure I type it differently every time I write it!)
Nate had another fitting today, with the new wheels. The guy came two and a half hours early. Just as Nate was going down for a nap. And then when Ryan put him in his red chair, he started crying. Not a good sign. Long story short-wheels are better but there is a problem with the seat height now. Which requires some little tool thingey that the guy (surprise, surprise) didn't have with him. So we are set up again for the end of next week.
Sigh.
Later after I got home I was talking to Nate about his red chair. I asked him, "Did you like your red chair?" His response? "Like the blue chair."
And continuing the fun...the bladder test I mentioned the other day turned out to be just a renal ultrasound. Which I knew was not right as soon as Ryan and Nate left Children's and were headed home. A few phone calls confirmed that he also needed a video-urodynamics (which fills his bladder with a saline solution to see how much it can hold, while taking a video to see at what point there is reflux to the kidney-or that's at least how I understand it-we've never had this procedure before).
So, it's back to Children's on Nov. 3rd for the correct test. Trying to set up clinic for Nov. 16th. Feeling anxious about it all.
**************************************
I am incredibly behind in pictures. Stay tuned for pumpkin patch, fall photo shoot and happy-to-be-reunited-with-Aunt-Gina pics (she is officially HOME as of a half hour ago!!! No more two and a half hour flight to visit her in Orlando-now it's just a two and a half hour drive to Milwaukee!!!)
PS-I can't find the cord that connects the camera with the video to the computer so I can't upload video of him in his chair just yet. Please let this picture serve as a replacement for now! :)
Nate had another fitting today, with the new wheels. The guy came two and a half hours early. Just as Nate was going down for a nap. And then when Ryan put him in his red chair, he started crying. Not a good sign. Long story short-wheels are better but there is a problem with the seat height now. Which requires some little tool thingey that the guy (surprise, surprise) didn't have with him. So we are set up again for the end of next week.
Sigh.
Later after I got home I was talking to Nate about his red chair. I asked him, "Did you like your red chair?" His response? "Like the blue chair."
And continuing the fun...the bladder test I mentioned the other day turned out to be just a renal ultrasound. Which I knew was not right as soon as Ryan and Nate left Children's and were headed home. A few phone calls confirmed that he also needed a video-urodynamics (which fills his bladder with a saline solution to see how much it can hold, while taking a video to see at what point there is reflux to the kidney-or that's at least how I understand it-we've never had this procedure before).
So, it's back to Children's on Nov. 3rd for the correct test. Trying to set up clinic for Nov. 16th. Feeling anxious about it all.
**************************************
I am incredibly behind in pictures. Stay tuned for pumpkin patch, fall photo shoot and happy-to-be-reunited-with-Aunt-Gina pics (she is officially HOME as of a half hour ago!!! No more two and a half hour flight to visit her in Orlando-now it's just a two and a half hour drive to Milwaukee!!!)
PS-I can't find the cord that connects the camera with the video to the computer so I can't upload video of him in his chair just yet. Please let this picture serve as a replacement for now! :)
October 24, 2010
The waiting game
I called exactly 6 weeks after we ordered it. And, surprisingly, it was in.
So we went to pick it up. And when they wheeled it out, it was red. Red, as in the opposite of blue which is what we ordered.
And then there was this little problem where Nate could barely reach the wheels. So we ordered bigger ones. And made an appointment for the following week. Which was cancelled. And rescheduled. And cancelled again. We are hoping and praying that this Tuesday's appointment will finally be the one where Nate gets his chair. His red chair.
Sigh.
Here is a picture of it from our first appointment.
Fortunately they did have a loaner chair they let us use so Nate has been tearin' up the town in that one. It's actually the first model we were going to order but had second thoughts about due to how small it is. He barely fits into it now, and it won't allow much room for growth so I'm glad we went with the bigger one. Although he is learning to maneuver the loaner one quite well and it is low enough that he is able to pick up things he drops on the floor. Anxious to see what challenges his new one will bring. Today we took him out in public for the first time (to church) and he had a ball. Everyone was so impressed with how well he gets around.
In other news, Ryan is taking Nate downtown to Children's tomorrow for a bladder test. This was one that was scheduled to determine if his bladder function is deteriorating which will help decide if he needs a detethering surgery. We need to follow up with a clinic appointment next month. This is more of a waiting game...waiting to see what the text results say and whether Nate will need another surgery. We have been trying not to think about it for the past several weeks but it's been like the big elephant in the room. Hoping for positive test results that will buy us some more time.
Took some video of him in his chair-going to post soon!
So we went to pick it up. And when they wheeled it out, it was red. Red, as in the opposite of blue which is what we ordered.
And then there was this little problem where Nate could barely reach the wheels. So we ordered bigger ones. And made an appointment for the following week. Which was cancelled. And rescheduled. And cancelled again. We are hoping and praying that this Tuesday's appointment will finally be the one where Nate gets his chair. His red chair.
Sigh.
Here is a picture of it from our first appointment.
Fortunately they did have a loaner chair they let us use so Nate has been tearin' up the town in that one. It's actually the first model we were going to order but had second thoughts about due to how small it is. He barely fits into it now, and it won't allow much room for growth so I'm glad we went with the bigger one. Although he is learning to maneuver the loaner one quite well and it is low enough that he is able to pick up things he drops on the floor. Anxious to see what challenges his new one will bring. Today we took him out in public for the first time (to church) and he had a ball. Everyone was so impressed with how well he gets around.
In other news, Ryan is taking Nate downtown to Children's tomorrow for a bladder test. This was one that was scheduled to determine if his bladder function is deteriorating which will help decide if he needs a detethering surgery. We need to follow up with a clinic appointment next month. This is more of a waiting game...waiting to see what the text results say and whether Nate will need another surgery. We have been trying not to think about it for the past several weeks but it's been like the big elephant in the room. Hoping for positive test results that will buy us some more time.
Took some video of him in his chair-going to post soon!
October 18, 2010
Another little idea gone big
So, here we are again.
One mom with an idea, and a few days later we have sold nearly 700 shirts advocating for our kids. 700 shirts, people!!! Simply amazing.
And now this.
Spina Bifida Kids National Day of Prayer.
This Wednesday. At noon EST.
Pray for those living with sb. Pray for the newly diagnosed mothers and fathers who are scared and feel like no one could possibly understand what is happening to them or their baby. Pray for the doctors who give the news.
Please, join us and pray.
As of this posting, we are near 1000 people who have committed via faceboook.
Amazing.
This October, we are leaving our mark.
One mom with an idea, and a few days later we have sold nearly 700 shirts advocating for our kids. 700 shirts, people!!! Simply amazing.
And now this.
Spina Bifida Kids National Day of Prayer.
This Wednesday. At noon EST.
Pray for those living with sb. Pray for the newly diagnosed mothers and fathers who are scared and feel like no one could possibly understand what is happening to them or their baby. Pray for the doctors who give the news.
Please, join us and pray.
As of this posting, we are near 1000 people who have committed via faceboook.
Amazing.
This October, we are leaving our mark.
October 16, 2010
God does not make mistakes
Early on in my pregnancy, my husband and I took a trip to Orlando to visit my sister. We went and did the typical touristy stuff and had a god time. Tonight, after feeling many strong emotions, I have been reminded of that trip. Specifically, our day at Sea World. While we were there I remember seeing several children-some in wheel chairs, some in braces, some severely disabled-and every time I did I remember thinking, "Please don't let that be me. I don't think I can handle that."
God knew differently.
The day of Nate's diagnosis, my husband and I just laid in bed, held each other, and cried. We were presented with the option to terminate my pregnancy and it was weighing on us heavily. For me, there was no option. I had already grown attached to my baby, had seen his sweet face on ultrasound, begun making plans for a beautiful nursery and felt him move and kick in my tummy. This child was mine, no matter what the outcome. Ryan was in a different place at that moment. He was stuck on the scare-tactic, worst-case scenario that had been laid out before us. Surgeries. Partial paralysis. Loss of bowel and bladder function. Therapy. All this medical lingo made him question our unborn baby's quality of life. I remember him saying, "I don't want our kid to have to use a catheter to go to the bathroom. I don't think I could handle that."
God knew differently.
He knows us better than we know ourselves. And he won't give us more than we can handle.
And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.
Romans 5: 2-5
Recent events have really made me think about where I stand on abortion.
I didn't feel I could commit to one side or the other.
Yet, how can I support ending a life when I feel like my child was a GIFT? How can I support the choice to end a life because someone may want to hold out for, as they put it, "a better outcome"?
For you created my inmost being;
you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.
Psalm 139:13-16
Nathan was ment to be our son. And we were meant to be his parents.
God does not make mistakes.
Doctors make mistakes. Misdiagnose. Try to determine a child's ability before that child has even had the chance to breathe out of the womb. Present worst-case-scenarios without so much as a glance in the positive direction. Lay their own, personal opinions about life on parent's shoulders. Push for termination. I recently read a post by a mother whose doctor told her, “You should just clean the slate, and start over. It is so shameful knowingly bringing a child like this into the world.”
I know that I want to be an advocate for our children and the miracles they are. I have felt this way for a long time-and haven't known what to do with it. Until now. I want to do what no one was able to do for me right after Nathan's diagnosis-I want to help put the pieces back together after that bleak picture is painted. I think that is the goal of most of us sb mommies-not only to RE-EDUCATE the very same doctors who educated us on what spina bifida is (a FAR cry from what it's known to be and from what many of them believe it to be) but to help others who may find themselves in the same situation we were faced with-and to tell them that spina bifida is not a death sentence.
I can not be an advocate for our children while also believing that terminating a pregnancy because of a diagnosis of sb is the right choice. The whole point of my blog is (yes, to chronicle our life and post ridiculous amounts of pictures of Nate) my desire to try to reach those who are hurting and scared like we once were, and to let them know that there is so much beauty in the midst of all that anger and hurt. With every picture I take I am trying to convey what I already know-that Nathan is perfect in our eyes, and is just as God intended him to be.
As a fellow sb momma put it,
This is my fire.
October is Spina Bifida Awareness month. During this month I always feel tremendous pressure to do something to try to make a difference.
Today, I learned I already am.
I am Facebook friends with a pretty awesome guy in his 20s who has sb. Tonight he told me that I am already making a difference in Nathan's life by just being a loving and caring mother. Best affirmation I could have ever asked for.
I need to let go. I have been emotionally distraught all day. But this blog post was my way of processing all that I read today. I have a clearer position on where I stand, and I have a fire. All I can hope is that my fire will someday be enough to guide others to make the best decision I ever made.
God knew differently.
The day of Nate's diagnosis, my husband and I just laid in bed, held each other, and cried. We were presented with the option to terminate my pregnancy and it was weighing on us heavily. For me, there was no option. I had already grown attached to my baby, had seen his sweet face on ultrasound, begun making plans for a beautiful nursery and felt him move and kick in my tummy. This child was mine, no matter what the outcome. Ryan was in a different place at that moment. He was stuck on the scare-tactic, worst-case scenario that had been laid out before us. Surgeries. Partial paralysis. Loss of bowel and bladder function. Therapy. All this medical lingo made him question our unborn baby's quality of life. I remember him saying, "I don't want our kid to have to use a catheter to go to the bathroom. I don't think I could handle that."
God knew differently.
He knows us better than we know ourselves. And he won't give us more than we can handle.
And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.
Romans 5: 2-5
Recent events have really made me think about where I stand on abortion.
I didn't feel I could commit to one side or the other.
Yet, how can I support ending a life when I feel like my child was a GIFT? How can I support the choice to end a life because someone may want to hold out for, as they put it, "a better outcome"?
For you created my inmost being;
you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.
Psalm 139:13-16
Nathan was ment to be our son. And we were meant to be his parents.
God does not make mistakes.
Doctors make mistakes. Misdiagnose. Try to determine a child's ability before that child has even had the chance to breathe out of the womb. Present worst-case-scenarios without so much as a glance in the positive direction. Lay their own, personal opinions about life on parent's shoulders. Push for termination. I recently read a post by a mother whose doctor told her, “You should just clean the slate, and start over. It is so shameful knowingly bringing a child like this into the world.”
I know that I want to be an advocate for our children and the miracles they are. I have felt this way for a long time-and haven't known what to do with it. Until now. I want to do what no one was able to do for me right after Nathan's diagnosis-I want to help put the pieces back together after that bleak picture is painted. I think that is the goal of most of us sb mommies-not only to RE-EDUCATE the very same doctors who educated us on what spina bifida is (a FAR cry from what it's known to be and from what many of them believe it to be) but to help others who may find themselves in the same situation we were faced with-and to tell them that spina bifida is not a death sentence.
I can not be an advocate for our children while also believing that terminating a pregnancy because of a diagnosis of sb is the right choice. The whole point of my blog is (yes, to chronicle our life and post ridiculous amounts of pictures of Nate) my desire to try to reach those who are hurting and scared like we once were, and to let them know that there is so much beauty in the midst of all that anger and hurt. With every picture I take I am trying to convey what I already know-that Nathan is perfect in our eyes, and is just as God intended him to be.
As a fellow sb momma put it,
This is my fire.
October is Spina Bifida Awareness month. During this month I always feel tremendous pressure to do something to try to make a difference.
Today, I learned I already am.
I am Facebook friends with a pretty awesome guy in his 20s who has sb. Tonight he told me that I am already making a difference in Nathan's life by just being a loving and caring mother. Best affirmation I could have ever asked for.
I need to let go. I have been emotionally distraught all day. But this blog post was my way of processing all that I read today. I have a clearer position on where I stand, and I have a fire. All I can hope is that my fire will someday be enough to guide others to make the best decision I ever made.
October 13, 2010
October 10, 2010
October 06, 2010
From 18 to 30
This is my husband (then my boyfriend) and I celebrating our 18th birthdays. In 1998. When we graduated high school together and headed off to separate colleges. We had no idea where our relationship was going to go. We had so many new adventures ahead for us bringing new challenges for us both. Surviving 4 years of college as a couple, living away from each other was definitely not easy. But we made it, somehow.
This September we both celebrated our 30th birthdays. We decided to celebrate and invited our friends and family for a night out. I really was hating the idea of turning 30 (and feeling old) for the longest time, but the more I thought about it the more I realized that I should be thankful for another year.
Recently we returned to my alma matter (North Park University in Chicago) and walked around the campus. We walked down the same streets and paths where I had lived for 4 years and Ryan had driven once a week to visit me, towing our little two year old behind us in his wagon. It was pretty surreal, thinking about how unsure we were about things then and how blessed we are now.
Here's to 30 more birthdays...and then some!
This September we both celebrated our 30th birthdays. We decided to celebrate and invited our friends and family for a night out. I really was hating the idea of turning 30 (and feeling old) for the longest time, but the more I thought about it the more I realized that I should be thankful for another year.
Recently we returned to my alma matter (North Park University in Chicago) and walked around the campus. We walked down the same streets and paths where I had lived for 4 years and Ryan had driven once a week to visit me, towing our little two year old behind us in his wagon. It was pretty surreal, thinking about how unsure we were about things then and how blessed we are now.
Here's to 30 more birthdays...and then some!
October 03, 2010
A weekend of walking
Last weekend our gathered together and walked. We walked for my gramma, for my mother-in-law and for Nate.
Saturday night was Light the Night for cancer in Chicago. We've been doing this for a few years now in support of my mother-in-law, a cancer survivor, and in memory of my gramma. It was a very fall-ish night, cool and windy, but we made the best of it.
No matter what the temperature is, Chicago is beautiful. Especially at night.
(Some of these photos have too much "noise" or look grainy-I had my ISO cranked waaaaay up. I'm still learning!)
It was a great night walking for a good cause. And Nate was a rock star, as usual. We just bundled him up, put him in the double stroller with his cousin and a blanket and he was good to go. The band and echoing tunnel didn't even bother him this year! Yea, progress there!
Sunday was our second Walk and Roll for Spina Bifida. We were fortunate to meet some other families from our babycenter chat group there. It was wonderful to finally meet some of these ladies (and their cute kiddos) in person! We had another chilly, overcast day but the sun did come out for a little while and we avoided rain.
As I wrote about in a previous post, we were very successful in raising money for the SBAI. Words simply can not express our gratitude. Team Nate really rocked it out this year! Here are some pictures from our day.
October is a big month for us. Stay tuned...I have a few things up my sleeve!
Saturday night was Light the Night for cancer in Chicago. We've been doing this for a few years now in support of my mother-in-law, a cancer survivor, and in memory of my gramma. It was a very fall-ish night, cool and windy, but we made the best of it.
No matter what the temperature is, Chicago is beautiful. Especially at night.
(Some of these photos have too much "noise" or look grainy-I had my ISO cranked waaaaay up. I'm still learning!)
It was a great night walking for a good cause. And Nate was a rock star, as usual. We just bundled him up, put him in the double stroller with his cousin and a blanket and he was good to go. The band and echoing tunnel didn't even bother him this year! Yea, progress there!
Sunday was our second Walk and Roll for Spina Bifida. We were fortunate to meet some other families from our babycenter chat group there. It was wonderful to finally meet some of these ladies (and their cute kiddos) in person! We had another chilly, overcast day but the sun did come out for a little while and we avoided rain.
As I wrote about in a previous post, we were very successful in raising money for the SBAI. Words simply can not express our gratitude. Team Nate really rocked it out this year! Here are some pictures from our day.
October is a big month for us. Stay tuned...I have a few things up my sleeve!
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