I'll admit, I've slacked this month (yes, I do realize this is the very last day of October). But I've been at a loss for words about what I want to say about awareness. I know that awareness has saved lives. Literally. I know of several cases where a mother decided not to abort because of a blog, video or group she found. I know awareness helped me to find an incredible group of moms who encourage and support each other and their children every step of the way. One of those moms wrote up a little something that was everything I wanted to say but couldn't think of. Thanks, Joanna.
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Showing posts with label spina bifida. Show all posts
Showing posts with label spina bifida. Show all posts
October 31, 2011
Awareness
October is spina bifida awareness month.
I'll admit, I've slacked this month (yes, I do realize this is the very last day of October). But I've been at a loss for words about what I want to say about awareness. I know that awareness has saved lives. Literally. I know of several cases where a mother decided not to abort because of a blog, video or group she found. I know awareness helped me to find an incredible group of moms who encourage and support each other and their children every step of the way. One of those moms wrote up a little something that was everything I wanted to say but couldn't think of. Thanks, Joanna.
I'll admit, I've slacked this month (yes, I do realize this is the very last day of October). But I've been at a loss for words about what I want to say about awareness. I know that awareness has saved lives. Literally. I know of several cases where a mother decided not to abort because of a blog, video or group she found. I know awareness helped me to find an incredible group of moms who encourage and support each other and their children every step of the way. One of those moms wrote up a little something that was everything I wanted to say but couldn't think of. Thanks, Joanna.
June 08, 2011
Today
Today has been difficult.
Today, we talked about what was going to happen. They would put on the mask. And he would go to sleep. And Dr. Bowman would fix his head. After he woke up he'd have on a "hat" and probably an owie on his head. We'd spend the night in the hospital. And mommy and daddy would be there the whole time. He had this down-packed.
Today, Nate was as happy as could be and flirted non-stop with the female nurses while we waited the 4+ hours for him to go into the OR. (Must be those blue eyes and long eyelashes.)
Today we talked about what it means to be brave. I told him being brave means that even when you are scared, you are still strong. We practiced this when he had to get his blood drawn. Would you believe that he didn't even flinch? Not so much as a whimper when they put the needle in. (If you know me or asked my mom, she would have a MUCH different story of how I reacted to getting my blood drawn when I was little. And mom, this is not an invitation for you to write the whole story in the comments.)
Today, Nate didn't eat anything. And he didn't complain either.
Today, he had to have 3 xrays and was a champ. Proudly showed off his stickers to me afterward.
Today when they wheeled him back for surgery, he was happily chatting with the nurse who was bringing him back.
Today, I learned something. I learned that my 3 year old (as of tomorrow, anyway) is braver than me. Like, waaaaaay braver. I broke down yesterday (pregnant and hormonal + your baby being in the hospital for an unplanned surgery on his birthday = emotional mess). I didn't want to. I tried to control it, but I couldn't. I sobbed into my hands that covered my face so Nate wouldn't see me. But he knew. He wheeled his little chair up to me and said, "Mommy, you sneezed?" Broke my heart. I realized something then-that I need to be stronger for him. If he can handle it all so well, why can't I? I can't even handle getting a cavity filled. Seriously. I can't imagine what kind of wreck I would be if Nate didn't handle hospitals and doctors and nurses so well. I think him being so brave actually has helped me get through these times more easily. And for that I am very lucky.
Today, my day-away-from-turning-3-year-old taught me how to be brave.
Today, we talked about what was going to happen. They would put on the mask. And he would go to sleep. And Dr. Bowman would fix his head. After he woke up he'd have on a "hat" and probably an owie on his head. We'd spend the night in the hospital. And mommy and daddy would be there the whole time. He had this down-packed.
Today, Nate was as happy as could be and flirted non-stop with the female nurses while we waited the 4+ hours for him to go into the OR. (Must be those blue eyes and long eyelashes.)
Today we talked about what it means to be brave. I told him being brave means that even when you are scared, you are still strong. We practiced this when he had to get his blood drawn. Would you believe that he didn't even flinch? Not so much as a whimper when they put the needle in. (If you know me or asked my mom, she would have a MUCH different story of how I reacted to getting my blood drawn when I was little. And mom, this is not an invitation for you to write the whole story in the comments.)
Today, Nate didn't eat anything. And he didn't complain either.
Today, he had to have 3 xrays and was a champ. Proudly showed off his stickers to me afterward.
Today when they wheeled him back for surgery, he was happily chatting with the nurse who was bringing him back.
Today, I learned something. I learned that my 3 year old (as of tomorrow, anyway) is braver than me. Like, waaaaaay braver. I broke down yesterday (pregnant and hormonal + your baby being in the hospital for an unplanned surgery on his birthday = emotional mess). I didn't want to. I tried to control it, but I couldn't. I sobbed into my hands that covered my face so Nate wouldn't see me. But he knew. He wheeled his little chair up to me and said, "Mommy, you sneezed?" Broke my heart. I realized something then-that I need to be stronger for him. If he can handle it all so well, why can't I? I can't even handle getting a cavity filled. Seriously. I can't imagine what kind of wreck I would be if Nate didn't handle hospitals and doctors and nurses so well. I think him being so brave actually has helped me get through these times more easily. And for that I am very lucky.
Today, my day-away-from-turning-3-year-old taught me how to be brave.
Labels:
bravery,
hospital stays,
spina bifida,
surgery,
today
December 05, 2010
Full circle, part II
I love that Nate has cousins he can grow up with (and two more on the way!) and neighbor pals he can play at the park with. But as much as they love him, and as much as they want to include him, there are always obstacles. And as much as I love my family and enjoy spending time with other mommies on the block, they simply can not understand what it means to be a mother to a child with special needs.
So, what do I do about this?
I reach out to one of my sisters, load up, jump in the car and drive three hours to Grand Rapids to spend some time with people who get me. And even better, Nate gets to spend time with someone who is just like him.
I wrote about a similar experience when my friend Jen and her family stopped by on their drive to Chicago. It was so awesome. And again, when we briefly had dinner with the Gibbs on our way through Michigan. We didn't have a lot of time together, but we hit it off right away. So when I was feeling really lonely and needed some time with another sb family, I e-mailed her about getting together and she more than graciously offered for Nate and I to come stay with them for a night. AND she put together a little sb play date the next day.
Two days just hanging out, watching our boys play and talking about stuff only we get. Awesome.
To say Grey and Nate hit it off would be an understatement.

Leigh and I had to do double takes a couple times because we realized we had just checked on the wrong kid. Must have been the blonde hair. Or the matching shirts. :)

We also got to meet Carson and his mommy Emily and daddy Nate. Carson is adorable and is walking with a walker! It was awesome to see him doing so well. Even more awesome to see the three boys together.


Yeah, I'm going to use the word awesome a lot in this post. Just get used to it!
Nate got to play with lots of other kids and I got to talk with lots of other mommies. Leigh is blessed to have a wonderful support group right in her own city, and for a day I felt like I was part of that.

Nate has been talking about Grey since we left. When he sees a picture of himself on my blog or on facebook, he points and says, "Grey".
They had so much fun together. And I think Grey was smitten. :)



I don't know what I enjoyed more. Watching these two boys love on each other,

or watching Leigh snuggle up in a big chair and read them bedtime stories,

or watching Grey try out Nate's wheel chair.
Probably all of it.
But, being in a place where I totally felt safe talking about my fears, sharing scar stories, chatting about floor plans, therapy and mobility over Diet Dr. Peppers was awesome.

I hope these little cuties can be buddies for a long, long time. Because watching Nate play with someone who is just like him

was priceless.
So, what do I do about this?
I reach out to one of my sisters, load up, jump in the car and drive three hours to Grand Rapids to spend some time with people who get me. And even better, Nate gets to spend time with someone who is just like him.
I wrote about a similar experience when my friend Jen and her family stopped by on their drive to Chicago. It was so awesome. And again, when we briefly had dinner with the Gibbs on our way through Michigan. We didn't have a lot of time together, but we hit it off right away. So when I was feeling really lonely and needed some time with another sb family, I e-mailed her about getting together and she more than graciously offered for Nate and I to come stay with them for a night. AND she put together a little sb play date the next day.
Two days just hanging out, watching our boys play and talking about stuff only we get. Awesome.
To say Grey and Nate hit it off would be an understatement.
Leigh and I had to do double takes a couple times because we realized we had just checked on the wrong kid. Must have been the blonde hair. Or the matching shirts. :)
We also got to meet Carson and his mommy Emily and daddy Nate. Carson is adorable and is walking with a walker! It was awesome to see him doing so well. Even more awesome to see the three boys together.
Yeah, I'm going to use the word awesome a lot in this post. Just get used to it!
Nate got to play with lots of other kids and I got to talk with lots of other mommies. Leigh is blessed to have a wonderful support group right in her own city, and for a day I felt like I was part of that.

Nate has been talking about Grey since we left. When he sees a picture of himself on my blog or on facebook, he points and says, "Grey".
They had so much fun together. And I think Grey was smitten. :)
I don't know what I enjoyed more. Watching these two boys love on each other,
or watching Leigh snuggle up in a big chair and read them bedtime stories,
or watching Grey try out Nate's wheel chair.
Probably all of it.
But, being in a place where I totally felt safe talking about my fears, sharing scar stories, chatting about floor plans, therapy and mobility over Diet Dr. Peppers was awesome.
I hope these little cuties can be buddies for a long, long time. Because watching Nate play with someone who is just like him
was priceless.
November 26, 2010
Thankful
At our church's Thanksgiving service, they showed a video clip of a couple who were especially thankful. The woman on the clip started talking about how when she was pregnant the doctors told her that there was a chance that her baby would be born with Down Syndrome, and about how she prayed and prayed that the doctors were wrong.
At that moment, I knew we had the same story.
God did not answer those prayers. Her son was born with Down Syndrome. There were times she thought she wouldn't be able to handle it. But 11 years later, she couldn't imagine her life without him.
And then she said something that I think only mothers like she and I can understand. She said that if she could, she wouldn't take it back. Because all the trials and triumphs that her son goes through, make him who he is.

I think about that a lot. Well, really I only think about one thing. And that is that if Nate didn't have spina bifida, if he could walk and run and do all of those typical things that he can't do right now, he simply would not be Nate. He would be somebody else. When that image of him as a "typical" kid enters my mind, the one where he is walking and running around our house doing all the typical things that two year olds do, it's as if I am seeing someone else's child in my home and not mine.

That may be difficult for some to understand or believe. They may think, "what mother wouldn't want to take away something that keeps their child from walking or running or living a "typical" life?" And my answer to that would be that I wouldn't want to take something away from him that makes him who he is. Spina bifida does not define him-but all that he has been through and continues to endure will shape him into the person he is supposed to be. The person God intended him to be.

Of course, that is not to say that I don't worry constantly, have my doubts about whether I am making the right decisions, wonder if I am doing enough and wish that I could take all the pain and the surgeries on myself. But God has a plan. And worrying only steals time away.
It's so easy to get lost inside
a problem that seems so big at the time
it's like a river thats so wide
it swallows you whole
While you sit around thinking about what you can't change
and worrying about all the wrong things
time's flying by
moving so fast
you better make it count 'cause you can't get it back

Sometimes that mountain you've been climbing is just a grain of sand
What you've been up there searching for
forever is in your hands
When you figure out love is all that matters after all
It sure makes everything else
seem so small
~Carrie Underwood
There is no fear in love,
but perfect love casts out fear.
1 John 4:18

Our blessings, they are many. And we just try to take it one blessed day at a time.
At that moment, I knew we had the same story.
God did not answer those prayers. Her son was born with Down Syndrome. There were times she thought she wouldn't be able to handle it. But 11 years later, she couldn't imagine her life without him.
And then she said something that I think only mothers like she and I can understand. She said that if she could, she wouldn't take it back. Because all the trials and triumphs that her son goes through, make him who he is.
I think about that a lot. Well, really I only think about one thing. And that is that if Nate didn't have spina bifida, if he could walk and run and do all of those typical things that he can't do right now, he simply would not be Nate. He would be somebody else. When that image of him as a "typical" kid enters my mind, the one where he is walking and running around our house doing all the typical things that two year olds do, it's as if I am seeing someone else's child in my home and not mine.
That may be difficult for some to understand or believe. They may think, "what mother wouldn't want to take away something that keeps their child from walking or running or living a "typical" life?" And my answer to that would be that I wouldn't want to take something away from him that makes him who he is. Spina bifida does not define him-but all that he has been through and continues to endure will shape him into the person he is supposed to be. The person God intended him to be.
Of course, that is not to say that I don't worry constantly, have my doubts about whether I am making the right decisions, wonder if I am doing enough and wish that I could take all the pain and the surgeries on myself. But God has a plan. And worrying only steals time away.
It's so easy to get lost inside
a problem that seems so big at the time
it's like a river thats so wide
it swallows you whole
While you sit around thinking about what you can't change
and worrying about all the wrong things
time's flying by
moving so fast
you better make it count 'cause you can't get it back
Sometimes that mountain you've been climbing is just a grain of sand
What you've been up there searching for
forever is in your hands
When you figure out love is all that matters after all
It sure makes everything else
seem so small
~Carrie Underwood
There is no fear in love,
but perfect love casts out fear.
1 John 4:18
Our blessings, they are many. And we just try to take it one blessed day at a time.
Labels:
getting real,
spina bifida,
thankful thursday,
the rebel
November 04, 2010
Finally
It's here, in all it's red glory!

I was worried that Nate wouldn't like it because it was so different from his loaner one. But he didn't seem to mind a bit. We put the new wheels on and the guy couldn't even get the plastic off of them before Nate was tearin' it up.

He's finally able to look out the window himself-the old one was too low.


Aaaand I finally found the cord to upload video! Hooray! This is one I took today...it's not much because my battery died. I just can't get a break with this thing.
***UPDATE*** I just tried to upload the video TWICE and it won't load! AAaaaaahhhhhh!!!
I was worried that Nate wouldn't like it because it was so different from his loaner one. But he didn't seem to mind a bit. We put the new wheels on and the guy couldn't even get the plastic off of them before Nate was tearin' it up.
He's finally able to look out the window himself-the old one was too low.
Aaaand I finally found the cord to upload video! Hooray! This is one I took today...it's not much because my battery died. I just can't get a break with this thing.
***UPDATE*** I just tried to upload the video TWICE and it won't load! AAaaaaahhhhhh!!!
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 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! :)
Labels:
doctor visits,
fall,
spina bifida,
update,
wheel chair
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.
September 12, 2010
Baby steps
We got a loner walker today (and the one we ordered through insurance should be in very soon). We are armed and ready for Wednesday's PT appointment where Nate will hopefully start learning how to use his equipment to WALK. We realize that this is going to be a slow process and, although he is two, we will be taking baby steps. It's still exciting all the same. Nate seems to be excited, too. If he sees his RGOs, he will point and say "legs" which is what we have been calling them. Then he'll say "Put legs on." I'll follow with "What do you want to do when we get them on?" and his reply is, "Stand. Walk." He is so patient while we put them on and doesn't seem to mind them at all! Here are some pics of daddy helping him walk (we aren't so good at it just yet-you can see how much he is leaning-but we're working on it!)


September 06, 2010
Watch out, world!
Here is Nate using his "wagon" as he likes to call it. He is really starting to get around in it. He actually used it most of the night tonight and we can see that he is building endurance. He happily wheeled all over our family room (on the carpet which is harder!) and played with toys. We are eternally grateful to our PT Toni and her husband for making it for him. Every time we see him in it, we can't help but think that he is REALLY going to take off when he gets his chair! (It was officially ordered Aug. 20th and should be in the middle of October!)
September 02, 2010
Real
I recently applauded a friend for being real on her blog and writing about not just the good and the bad, but the ugly, too. It's always been difficult for me to be 'real' in my writing because I just don't think I can write like that. Or maybe I am afraid to put it all out there. And as real and open as I am about Nathan's special needs I realized recently that I have never posted 'real' pictures of him. Most are pictures of him smiling or doing something cute. I think as real as I have gotten is posting pictures of him using some of his equipment and even then his adorable face is usually the main attraction. But there is a very raw and very real side of him that we see on a daily basis that I've never really shared before in pictures. Thanks to some very good friends who have gotten real lately, I've decided to share, along with the good and the bad, the real. And real does not have to be ugly. On the contrary, real can be beautiful.








His scars are a reminder of just how much he has endured and how far he has come. And to quote my friend Joanna, who writes beautiful words about our miracle babies on her blog,
scars are the most precious things to me -
they are a glorious statement that says -
I am alive.
I am a miracle.
God made me.
And I am wonderfully made.
And a Psalm that I have leaned on since Nathan was still growing in my tummy,
"I praise you that I am fearfully and wonderfully made;
Your works are wonderful,
I know that full well."
Psalms 139:14
Oh yes, real can be beautiful. And the beauty of our little boy, the joy he holds and the way he makes my heart want to burst with love is so very, very real.






His scars are a reminder of just how much he has endured and how far he has come. And to quote my friend Joanna, who writes beautiful words about our miracle babies on her blog,
scars are the most precious things to me -
they are a glorious statement that says -
I am alive.
I am a miracle.
God made me.
And I am wonderfully made.
And a Psalm that I have leaned on since Nathan was still growing in my tummy,
"I praise you that I am fearfully and wonderfully made;
Your works are wonderful,
I know that full well."
Psalms 139:14
Oh yes, real can be beautiful. And the beauty of our little boy, the joy he holds and the way he makes my heart want to burst with love is so very, very real.
August 29, 2010
New things
School started again and I have one word for that: Boo.
It's been a hard transition. I went from getting things done to not getting anything done at all. And of course I lost time with my precious little guy which is killing me. Especially missing most of his therapy appointments. No more water therapy or hippo for mom. Boo. Thank goodness for my mother-in-law and sister who have been helping us out while Ryan is still working midnights. Otherwise the transition back to work would have been that much more traumatic. So thankful for family!
I have some pictures of Nate doing some new things in his RGOs. We are still waiting on a walker so we haven't been able to really practice walking just yet. We have one ordered and are hoping it arrives soon. For now we have been practicing standing in them. We already had to have some tweaking done (he was leaning to his left) but things seem to be good now. Aside from playing at his sand and water table (mostly just the water part-he is NOT a fan of sand) we have been playing with playdoh at the coffee table, using window markers to draw on the patio doors, standing and looking out the front window and picking out books off the TOP shelf of his bookcase. Oh yes, lots of new things!



It's been a hard transition. I went from getting things done to not getting anything done at all. And of course I lost time with my precious little guy which is killing me. Especially missing most of his therapy appointments. No more water therapy or hippo for mom. Boo. Thank goodness for my mother-in-law and sister who have been helping us out while Ryan is still working midnights. Otherwise the transition back to work would have been that much more traumatic. So thankful for family!
I have some pictures of Nate doing some new things in his RGOs. We are still waiting on a walker so we haven't been able to really practice walking just yet. We have one ordered and are hoping it arrives soon. For now we have been practicing standing in them. We already had to have some tweaking done (he was leaning to his left) but things seem to be good now. Aside from playing at his sand and water table (mostly just the water part-he is NOT a fan of sand) we have been playing with playdoh at the coffee table, using window markers to draw on the patio doors, standing and looking out the front window and picking out books off the TOP shelf of his bookcase. Oh yes, lots of new things!


August 17, 2010
6
Right now i am terrified of this number.
I am still trying to dissect everything that happened at clinic today. It was quite a whirl wind that lasted hours later than it was supposed to (as it always does).
Good things: We got Nate's RGOs and they are so awesome! RGO stands for Reciprocating Gait Orthosis, and they are leg braces that will help aid him in learning to walk. It's been a bit of a long road trying to get them (today was no exception but I will spare you all the long scheduling-conflict story). Our PT comes tomorrow so we will be trying them out for the first time and we're so excited. Pictures to come!
Also, Nate was a ROCK STAR all day. Our first appoint was supposed to be 8:30 but didn't end up happening until much later in the afternoon so we were there until 3:30. We got several comments again from the staff about what a laid-back, easy going, well behaved little boy he is! Aside from having to ask for more diapers because as I have mentioned in previous posts, when it comes to BMs he is all or nothing and today was an ALL day, he was so good and it made our long day go that much smoother.
So back to that dreaded number 6.
The neuro surgeon basically had a conversation with us about his 6th surgery-a detethering. NOT what we wanted to hear. Honestly, I'm still not sold. We only recently started clinic at Children's and between what medical records they actually received (you'd think when you ask a hospital to send ALL medical records, that's what they would do) and what tests we have had done over the summer, they are still trying to "piece things together". Those were our neuro surgeon's words, and not exactly the most comforting. My problem is this: I just have a really hard time agreeing to a surgery that will only put him several steps back when we have been doing nothing but moving forward. Plus, we don't see anything symptomatic-it only shows up on paper or x-rays. Just really hard to grasp. Ryan and I have a lot to talk about. The plan right now is to go through another slew of tests, x-rays and another clinic appointment in 3 months and reassess from there.
So, right now we are going to pray. And ask if you are led, to please pray for wisdom for Nate's doctors, clarity in communicating with us, and peace in trusting in God's plan. And if as you read this, you have a little one who has been through a tethering surgery or are considering having one, we would love some feedback from parents.

Here is an updated pic of Nate's eyes, which are healing nicely. I'm still hoping Lefty will come around a little but overall there is definitely a positive change!
I am still trying to dissect everything that happened at clinic today. It was quite a whirl wind that lasted hours later than it was supposed to (as it always does).
Good things: We got Nate's RGOs and they are so awesome! RGO stands for Reciprocating Gait Orthosis, and they are leg braces that will help aid him in learning to walk. It's been a bit of a long road trying to get them (today was no exception but I will spare you all the long scheduling-conflict story). Our PT comes tomorrow so we will be trying them out for the first time and we're so excited. Pictures to come!
Also, Nate was a ROCK STAR all day. Our first appoint was supposed to be 8:30 but didn't end up happening until much later in the afternoon so we were there until 3:30. We got several comments again from the staff about what a laid-back, easy going, well behaved little boy he is! Aside from having to ask for more diapers because as I have mentioned in previous posts, when it comes to BMs he is all or nothing and today was an ALL day, he was so good and it made our long day go that much smoother.
So back to that dreaded number 6.
The neuro surgeon basically had a conversation with us about his 6th surgery-a detethering. NOT what we wanted to hear. Honestly, I'm still not sold. We only recently started clinic at Children's and between what medical records they actually received (you'd think when you ask a hospital to send ALL medical records, that's what they would do) and what tests we have had done over the summer, they are still trying to "piece things together". Those were our neuro surgeon's words, and not exactly the most comforting. My problem is this: I just have a really hard time agreeing to a surgery that will only put him several steps back when we have been doing nothing but moving forward. Plus, we don't see anything symptomatic-it only shows up on paper or x-rays. Just really hard to grasp. Ryan and I have a lot to talk about. The plan right now is to go through another slew of tests, x-rays and another clinic appointment in 3 months and reassess from there.
So, right now we are going to pray. And ask if you are led, to please pray for wisdom for Nate's doctors, clarity in communicating with us, and peace in trusting in God's plan. And if as you read this, you have a little one who has been through a tethering surgery or are considering having one, we would love some feedback from parents.
Here is an updated pic of Nate's eyes, which are healing nicely. I'm still hoping Lefty will come around a little but overall there is definitely a positive change!
Labels:
clinic,
doctor visits,
spina bifida,
trusting,
update
August 05, 2010
We've finally decided...
...and ended up with a happy medium. And I finally feel good about it.
Dan the wheel chair man (it has a nice ring to it, doesn't it?) came by earlier this week with two models for Nate to try out. One was teeny tiny and the other was quite big for him.

He got around great in the teeny chair and even protested a little when we took him out of it. It fit him near perfectly...but it just wasn't right. Although the chair would "grow with him" I couldn't see him in that teeny chair, so low to the ground, in a couple years. And this was no easy decision. We hemmed and hawed, and sought out opinions of therapists and other families we knew had already been in our situation. The bottom line is every child is different so you just have t to go with your gut.


The bigger chair was, quite obviously, too big but ultimately it had more of what we were looking for (double push handles, lighter weight). And you had the option of getting light up caster wheels (okay, I'm a grown-up and I thought they were so cool!). Nate may not get to wear those light-up shoes like all the other kids do, but in my opinion he's got something better! Now, keep in mind this is not the actual chair he is getting. The wheels on this particular chair were 24" and we ordered 16" wheels which will bring the height of the chair way down. But not as low as the teeny one. We decided on getting him the wheels with the spokes and the hand rail (like the ones in the pic below) versus the ones on the other chair for two reasons. 1.) I am a bit of a germ-o-phobe and the thought of Nate having to actually push dirty wheels around all the time was enough to freak me out, and 2.) these are the kinds of wheels he will be having for a long time (if a wheel chair is what works best for him down the road) so we thought it best to just start with these. He was able to maneuver both chairs easily, with Dan the wheel chair man even commenting how well he took to it.

So, there you go. Picture it a bit smaller, lower to the ground, in a Cubbie blue color with his name stitched on the back. We are genuinely excited to see him be able to move around independently, at the level of his peers. I've heard that giving kids this new-found sense of freedom can be life changing for them. We're eager to see how Nate feels about it. We're also super eager for it to come in, which we were told could take up to 8 weeks (if not more). As hard as it was to make a decision, I think playing the waiting game will be even harder!
Dan the wheel chair man (it has a nice ring to it, doesn't it?) came by earlier this week with two models for Nate to try out. One was teeny tiny and the other was quite big for him.
He got around great in the teeny chair and even protested a little when we took him out of it. It fit him near perfectly...but it just wasn't right. Although the chair would "grow with him" I couldn't see him in that teeny chair, so low to the ground, in a couple years. And this was no easy decision. We hemmed and hawed, and sought out opinions of therapists and other families we knew had already been in our situation. The bottom line is every child is different so you just have t to go with your gut.
The bigger chair was, quite obviously, too big but ultimately it had more of what we were looking for (double push handles, lighter weight). And you had the option of getting light up caster wheels (okay, I'm a grown-up and I thought they were so cool!). Nate may not get to wear those light-up shoes like all the other kids do, but in my opinion he's got something better! Now, keep in mind this is not the actual chair he is getting. The wheels on this particular chair were 24" and we ordered 16" wheels which will bring the height of the chair way down. But not as low as the teeny one. We decided on getting him the wheels with the spokes and the hand rail (like the ones in the pic below) versus the ones on the other chair for two reasons. 1.) I am a bit of a germ-o-phobe and the thought of Nate having to actually push dirty wheels around all the time was enough to freak me out, and 2.) these are the kinds of wheels he will be having for a long time (if a wheel chair is what works best for him down the road) so we thought it best to just start with these. He was able to maneuver both chairs easily, with Dan the wheel chair man even commenting how well he took to it.
So, there you go. Picture it a bit smaller, lower to the ground, in a Cubbie blue color with his name stitched on the back. We are genuinely excited to see him be able to move around independently, at the level of his peers. I've heard that giving kids this new-found sense of freedom can be life changing for them. We're eager to see how Nate feels about it. We're also super eager for it to come in, which we were told could take up to 8 weeks (if not more). As hard as it was to make a decision, I think playing the waiting game will be even harder!
August 03, 2010
Pure Michigan
We decided to turn a wedding weekend into a family vacation. We are suckers for Michigan, including the radio commercials where Tim Allen's soothing voice never ceases to make us want to load up the car with whatever we can manage to fit and leave our home here in boring Indiana to start a new life in the ever appealing state of Michigan.
Our first stop landed us at Red Robin. Yes, I know they have those in other places, including Indiana, but we were meeting some friends there (I can call them that now that we have actually met in real life!) I came up with the bright idea of trying to meet up with another family that I have been following online (gosh, that sounds so stalker-ish) and who live in Grand Rapids, only about a half hour from where we were staying. We had a great time and talked as only parents of kids with sb can, which was so reassuring and...nice. I don't get to do that very often! The boys sat together and checked each other out while we talked and I learned that Nate and Greyson are a lot alike (and not just in the blonde-haired, blue-eyed way). Leigh and Andy are just awesome, down-to-earth people (not to mention amazing parents) and Greyson is one amazing kid (even if he really likes his personal space). We were so happy to have that time together and are looking forward to getting together with them again.

Next, it was off to Holland where we walked around downtown and checked out the cute shops,



and checked out this little red lighthouse on the lake.


The wind and the water were too much for our little guy, who promptly fell asleep. Did I mention we brought the Governess (her words-not ours) with us? Yes, we selfishly had my mother-in-law act as nanny during our trip. Although, she didn't mind one bit.

And I must say, it worked out fabulously! Ryan and I got to enjoy some time alone together (out for a late drink at an Irish pub while on family vacation-yes, it is possible!) as well as the reception of the wedding we attended kid-free. And our dear Governess got a little vacation out of the deal, too!
Friday afternoon was spent at the beach, where Ryan and I got to frolic in the choppy water like we were kids again. Seriously, I don't think I've laughed like that in a loooong time. We all just loved soaking up the sun and listening to the waves.

Friday night we attended the beautiful wedding of Deanne and Dan and enjoyed time with family. (Can you believe I actually forgot my camera at the hotel during the ceremony?!)


Saturday we spent the day at Sandy Pines. I have lots of fond memories of visiting while growing up. It seems that someone in our family has always had property there and growing up we'd visit and go tubing or skiing. Great, great memories. And this momma tried her luck at skiing for the first time in probably 10 years (with a LOT of coaxing from my cousins) and I'm proud to say...

that I

got up

on the

FIRST TRY!!!
(That's my rock star face I'm making in the last picture!):)
I love that place! So glad Nate had some time there-hopefully he'll get to have some of the same memories that I did growing up. It was a much needed get-away filled with fun, family and friends. I'm pretty sure we've booked Michigan for next years family vacation, too!
Our first stop landed us at Red Robin. Yes, I know they have those in other places, including Indiana, but we were meeting some friends there (I can call them that now that we have actually met in real life!) I came up with the bright idea of trying to meet up with another family that I have been following online (gosh, that sounds so stalker-ish) and who live in Grand Rapids, only about a half hour from where we were staying. We had a great time and talked as only parents of kids with sb can, which was so reassuring and...nice. I don't get to do that very often! The boys sat together and checked each other out while we talked and I learned that Nate and Greyson are a lot alike (and not just in the blonde-haired, blue-eyed way). Leigh and Andy are just awesome, down-to-earth people (not to mention amazing parents) and Greyson is one amazing kid (even if he really likes his personal space). We were so happy to have that time together and are looking forward to getting together with them again.
Next, it was off to Holland where we walked around downtown and checked out the cute shops,
and checked out this little red lighthouse on the lake.
The wind and the water were too much for our little guy, who promptly fell asleep. Did I mention we brought the Governess (her words-not ours) with us? Yes, we selfishly had my mother-in-law act as nanny during our trip. Although, she didn't mind one bit.
And I must say, it worked out fabulously! Ryan and I got to enjoy some time alone together (out for a late drink at an Irish pub while on family vacation-yes, it is possible!) as well as the reception of the wedding we attended kid-free. And our dear Governess got a little vacation out of the deal, too!
Friday afternoon was spent at the beach, where Ryan and I got to frolic in the choppy water like we were kids again. Seriously, I don't think I've laughed like that in a loooong time. We all just loved soaking up the sun and listening to the waves.
Friday night we attended the beautiful wedding of Deanne and Dan and enjoyed time with family. (Can you believe I actually forgot my camera at the hotel during the ceremony?!)
Saturday we spent the day at Sandy Pines. I have lots of fond memories of visiting while growing up. It seems that someone in our family has always had property there and growing up we'd visit and go tubing or skiing. Great, great memories. And this momma tried her luck at skiing for the first time in probably 10 years (with a LOT of coaxing from my cousins) and I'm proud to say...
that I
got up
on the
FIRST TRY!!!
(That's my rock star face I'm making in the last picture!):)
I love that place! So glad Nate had some time there-hopefully he'll get to have some of the same memories that I did growing up. It was a much needed get-away filled with fun, family and friends. I'm pretty sure we've booked Michigan for next years family vacation, too!
Labels:
family fun,
family trips,
friends,
outdoors,
spina bifida,
summer
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