It has been a wild week at our house as we prepare for the return to school! Yep, school will be starting on Monday here in GA. I am not sure where our summer has gone. But, we had a good one.
Let me take a moment and celebrate some of Madilyn's successes....
1. For the first time in her life she has been able to swim in a pool with just her bathing suit on! The MACE procedure has changed her life when it comes to bowel control!
2. Madilyn passed the swim test at the YMCA...she swam 25 yards in the pool and can tread water for 1 minute...thanks to her older sister who is a champion swimmer for working with her many hours!
3. Madilyn went down her first water slide and loved every moment of it and jumped off the diving board like she was a professional.
4. She went to play with her friends on her own for the first time ever!
5. Madilyn survived a week without her Mom while she spent a week camping with her older sister!
Each of these moments were amazing. Each accomplishment helped her build a new confidence in herself. I hope that she will take this new found confidence with her as she enters the first grade.
I want to share with you all my feelings as we prepared for the return to school this past week. With my older children getting ready to for school is easy. Shop for clothes, buy school supplies and make a quick visit to pick up schedules at the their schools.
For Madilyn, it is quit different. We had lots of paperwork and lots of appointments. Our pediatrician is an important member of our medical team. We love Dr. Vicki! She is just like a member of our family. She is honest in her assessments and looks out for Madilyn. I was hopeful in my heart that things were not so bad but was prepared to hear that she was concerned about the changes taking place with Madilyn. It was hard to face them but we did.
Next we had our Urology checkup and follow up from Bowel Surgery three months ago. Then we had to discuss the loss of bladder control....I wanted to cry....! It has only been a year since our last spinal surgery. Madilyn's body is masterful at creating scar tissue. So, we are waiting on an appointment for a Urodynamics test. After we get those results, we will be headed to Dr. Reisner, our Neurosurgeon. Sometimes it seems like the never ending cycle. I am not complaining, I am just sharing. If you recall, Madilyn missed 67+ days last year from surgeries and hospitalizations and appointments.
I wouldn't want to forget Orthopedics! Trying to find a shoe to fit Madilyn's right foot is a nightmare!!!!! I think that the combination of the heat and the lymphedema is making it swell even more than usual. But, we must take great caution in putting shoes on her foot because she can not feel it due to the nerve damage. Pressure ulcers come quickly and can be a nightmare!
Finally, we had to have all our paperwork together. A 504 Medical plan is essential for Madilyn. Our visit to the school involved her teacher, the nurse and the Assistant Principal in charge of Special Education. Everyone has to been on the same page! I do not stop talking until I feel confident that we are working together.
So, I have done all I can do at this point. Come Monday morning I will send the entire crew out the door. Madilyn will be riding the bus for the first time because she wants to. I will probably cry as usual. I can't help it. Trusting others to care for her needs at school is the hardest thing I have ever done. There is a lot of uncertainty facing us this fall but we will start this new year with a smile and hope for the best.
Saturday, July 31, 2010
Thursday, July 29, 2010
Words of Wisdom
I'm so excited about this next post. Can I just tell you that I love emails!! Love them Love them Love them!! Especially when they are from perfect strangers. This man Mike wrote me a few days back with some incredibly encouraging thoughts. When I asked for even more, this is what he sent back!! He is 60 Years Old and has Cerebral Palsy. For me personally what he said was incredible profound and helpful. Hope you enjoy his words of wisdom as much as I did!!
First, I'm an unabashed fan of doctors, but in my lifetime, like everyone else, I've experienced the good and the not so good.The good have been great, and the not so good we won't dwell on. But, always remember, for all of the good doctors are able to do (and especially for spina bifida...you can't imagine how much progress has been made in my lifetime..and I'm just speaking as an observer with regard to SB), doctors' knowledge is limited too. They can't predict anyone's motivation or determination or what they'll accomplish. In the end that's what will count most.
Next, understand that the world is a far more welcoming place for the disabled than it's ever been. Sixty years ago many disabled people lived as shut-ins. The phrase "disabled access" meant nothing and the world was far more hostile to the disabled. You can't imagine how much this has changed. Now, you're going to run up against people who may not be so nice (my heart broke when I read your Mall story; but the security guards were jerks and the man who complained about Toby's walker was a jerk (sorry), and there are jerky people out there), but you'll be amazed by all of the good people who are out there and they'll far outweigh the bad. As an aside, my wife also has cerebral palsy and she uses a walker too.
We just did our fourth cruise together (as a married couple, none before...darn) (in fact we went to Norway and were above the Arctic Circle for four of the twelve days...very neat) and everyone was wonderful to us wherever we went (on and off the ship). In our childhoods no one could have imagined that people like us would be traveling independently, doing cruises, and all of the rest.
Two more things...
You're certainly on the right track as far as expecting more and more of Toby. Never stop. The more he can do over time
the better. Remember too that childhood passes very quickly and he'll be an adult for a long time (relatively speaking, of course), and the more you expect of him now the better prepared he'll be for the future. The best thing my mother ever did was push school. Neither of my parents were college educated but my mother's big thing was math (and my father's too) and her 'philosophy' was "if you can do math, you can do anything." So, she ended-up with three kids with four advanced degrees (2 in math, 1 in computer science, and my PhD in chemistry...but my dissertation was very mathematical).
But here's the real point....disabled kids need to be educated if they're going to be employed and they need to be employed if they're going to be successful adults. Disabled kids aren't going to become police officers, firefighters, truck drivers, football players, etc...so they need to develop their intellect. Now's the time to start...and never give up.
Finally, let Toby be Toby. Always encourage his curiosity and the things that interest him. Just a few anecdotes.
As a kid I was always fascinated by fire trucks. As I got older (like around 10) my interest peaked as I met firefighters (by the way I live in Philadelphia) and learned more about what they did. At 11 I wanted a "fire radio" so I could listen to "fire calls" and my parents went along (although at different times they probably rued that decision). So began a fifty year love affair with the Philadelphia Fire Department. But here's the point...not only did it start a lifelong hobby, it also brought me into contact with many wonderful people who were role models and were very instrumental in helping to shape my own personal growth. I would have missed a lot had my parents discouraged this interest. And, the other big thing was the periodic table. At age 14, I became fascinated with a periodic table that hung on a classroom wall and of course, I needed a periodic chart (a big one, no less) on my bedroom wall (I have one on my office wall, I'm not a chemist my PhD notwithstanding, but at work I joke that I use it (the chart) to scare our financial people away). So I pestered my parents for six months (I had pestering down to a science early on) and I got the chart. This opened up a lifelong interest in chemistry, helped make me become a more focused and determined student, and eventually found my way to a PhD in chemistry at age 53. So, again, I'm glad my parents let "Mike be Mike." So, let Toby be Toby (with some boundaries of course).
Sorry for the long windedness...
Warmest regards.
Mike
P.S. One thing about my Ph.D. I started my PhD program in 1991 at age 41. For two years prior to that I was "hanging out" with a professor at a local university who encouraged me to pursue the PhD and who also became my thesis adviser.
Without question, one of the most wonderful people to ever come into my life. Again, encourage Toby's interests....you never know what doors will open up in time.
First, I'm an unabashed fan of doctors, but in my lifetime, like everyone else, I've experienced the good and the not so good.The good have been great, and the not so good we won't dwell on. But, always remember, for all of the good doctors are able to do (and especially for spina bifida...you can't imagine how much progress has been made in my lifetime..and I'm just speaking as an observer with regard to SB), doctors' knowledge is limited too. They can't predict anyone's motivation or determination or what they'll accomplish. In the end that's what will count most.
Next, understand that the world is a far more welcoming place for the disabled than it's ever been. Sixty years ago many disabled people lived as shut-ins. The phrase "disabled access" meant nothing and the world was far more hostile to the disabled. You can't imagine how much this has changed. Now, you're going to run up against people who may not be so nice (my heart broke when I read your Mall story; but the security guards were jerks and the man who complained about Toby's walker was a jerk (sorry), and there are jerky people out there), but you'll be amazed by all of the good people who are out there and they'll far outweigh the bad. As an aside, my wife also has cerebral palsy and she uses a walker too.
We just did our fourth cruise together (as a married couple, none before...darn) (in fact we went to Norway and were above the Arctic Circle for four of the twelve days...very neat) and everyone was wonderful to us wherever we went (on and off the ship). In our childhoods no one could have imagined that people like us would be traveling independently, doing cruises, and all of the rest.
Two more things...
You're certainly on the right track as far as expecting more and more of Toby. Never stop. The more he can do over time
the better. Remember too that childhood passes very quickly and he'll be an adult for a long time (relatively speaking, of course), and the more you expect of him now the better prepared he'll be for the future. The best thing my mother ever did was push school. Neither of my parents were college educated but my mother's big thing was math (and my father's too) and her 'philosophy' was "if you can do math, you can do anything." So, she ended-up with three kids with four advanced degrees (2 in math, 1 in computer science, and my PhD in chemistry...but my dissertation was very mathematical).
But here's the real point....disabled kids need to be educated if they're going to be employed and they need to be employed if they're going to be successful adults. Disabled kids aren't going to become police officers, firefighters, truck drivers, football players, etc...so they need to develop their intellect. Now's the time to start...and never give up.
Finally, let Toby be Toby. Always encourage his curiosity and the things that interest him. Just a few anecdotes.
As a kid I was always fascinated by fire trucks. As I got older (like around 10) my interest peaked as I met firefighters (by the way I live in Philadelphia) and learned more about what they did. At 11 I wanted a "fire radio" so I could listen to "fire calls" and my parents went along (although at different times they probably rued that decision). So began a fifty year love affair with the Philadelphia Fire Department. But here's the point...not only did it start a lifelong hobby, it also brought me into contact with many wonderful people who were role models and were very instrumental in helping to shape my own personal growth. I would have missed a lot had my parents discouraged this interest. And, the other big thing was the periodic table. At age 14, I became fascinated with a periodic table that hung on a classroom wall and of course, I needed a periodic chart (a big one, no less) on my bedroom wall (I have one on my office wall, I'm not a chemist my PhD notwithstanding, but at work I joke that I use it (the chart) to scare our financial people away). So I pestered my parents for six months (I had pestering down to a science early on) and I got the chart. This opened up a lifelong interest in chemistry, helped make me become a more focused and determined student, and eventually found my way to a PhD in chemistry at age 53. So, again, I'm glad my parents let "Mike be Mike." So, let Toby be Toby (with some boundaries of course).
Sorry for the long windedness...
Warmest regards.
Mike
P.S. One thing about my Ph.D. I started my PhD program in 1991 at age 41. For two years prior to that I was "hanging out" with a professor at a local university who encouraged me to pursue the PhD and who also became my thesis adviser.
Without question, one of the most wonderful people to ever come into my life. Again, encourage Toby's interests....you never know what doors will open up in time.
Wednesday, July 28, 2010
LOL
I am a very discreet person, and I normally would never ever discuss this subject in person BUT! I knew that this is a funny story that us Spina Bifida moms can appreciate and laugh about. So please forgive me but I wanted to share a funny experience that happened yesterday following one of Carson's surgeries which we called a "glorified" circumcision.
Dr. Koh is Carson's urologist. He is a young man, probably in his late twenties. Following Carson's surgery he came out to consult with us regarding the surgery. He told us, "The surgery was successful, we repaired the hidden pe.." then he started choking, he tried to stop but had to excuse himself down the hall. A minute later he came back, and began again, this time talking a little bit about the bladder wall then he started to say, "We repaired the hidden pe.." and started choking again, excusing himself down the hall again. Came back and once again started choking at pe... This happened about 2 more times. While we still standing in the hallway one of the nurses came out and asked us if we needed anything, to which we replied that we were talking with Dr. Koh but he's getting a drink of water. She then stated, "Oh, he does that all the time when he talks about this subject." We all laughed and upon Dr. Koh's return, my husband stated the words (that he couldn't say) for him, and we had a very nice finish to our consult.
Doctors can be very intimidating at times, but there are these times too when we can remember their just like us.
Dr. Koh is Carson's urologist. He is a young man, probably in his late twenties. Following Carson's surgery he came out to consult with us regarding the surgery. He told us, "The surgery was successful, we repaired the hidden pe.." then he started choking, he tried to stop but had to excuse himself down the hall. A minute later he came back, and began again, this time talking a little bit about the bladder wall then he started to say, "We repaired the hidden pe.." and started choking again, excusing himself down the hall again. Came back and once again started choking at pe... This happened about 2 more times. While we still standing in the hallway one of the nurses came out and asked us if we needed anything, to which we replied that we were talking with Dr. Koh but he's getting a drink of water. She then stated, "Oh, he does that all the time when he talks about this subject." We all laughed and upon Dr. Koh's return, my husband stated the words (that he couldn't say) for him, and we had a very nice finish to our consult.
Doctors can be very intimidating at times, but there are these times too when we can remember their just like us.
Tuesday, July 27, 2010
The Mobile Stander
I recently was catching up on some of the amazing blogs. (found on the left side of the screen) When I came across Leigh's post on Grey trying out a mobile stander. It stuck out to me because I can remember seeing Toby in a wheelchair for the first time, I can remember dragging it out of the car for the first time (and feeling like everyone was staring at me) Sometimes certainly medical equipment things that we welcome into our lives and our homes (Good things that help our children) Can still be hard.
So thanks Leigh for writing this up!!
The Mobile Stander...
One week during PT, Greyson's therapist mentioned that she would be bringing some new "equipment" the following week. I always look forward to when she does this...whether it works or not, it is always fun to se what new things we can try with Grey. The next week as she rang the doorbell and came in, I saw lots of straps, levers, brakes, and something that I wasn't prepared for...big wheels. Big wheels with handles. Right away I started to tear up. I tried not to let it show, but I see Liz once a week and she knows me well by now. She knew that I would need a few minutes to adjust after seeing these wheels wheels that I didn't think that I would see for awhile yet) so she did what any nice person would do, she pretended like she didn't see the tears in my eyes. She just kept on talking so I wouldn't have to. (Just one of the reasons why I love her.) She started telling me that this thing that to me looked very much like a wheelchair, was actually a mobile stander. She explained that this was a way for Grey to be upright and moving, just like all of his peers. As we were putting him in it, I could see the look on Grey's face. He was not excited about being strapped in and was squirming and trying to get out until...he discovered that he could move these big wheels all. by. himself. He started off by just moving one. Forward and back, back and forward he went. Soon, he discovered that he could use BOTH hands and that he could CRASH into the walls (his favorite part). With each passing movement his smile got bigger and bigger. The more I saw him smile and moving and having FUN, the more OK I became. It was easy for me to see that this was so good for him. This is just one example of Grey, my sweet little 17 month old, being ready for something long before I am. Everyday he teaches me something. Some days he teaches me to be patient, some days he teaches me to be determined, on this day he taught me to open my mind and except whatever it is that can help him.
..whether I am ready or not!
So thanks Leigh for writing this up!!
The Mobile Stander...
One week during PT, Greyson's therapist mentioned that she would be bringing some new "equipment" the following week. I always look forward to when she does this...whether it works or not, it is always fun to se what new things we can try with Grey. The next week as she rang the doorbell and came in, I saw lots of straps, levers, brakes, and something that I wasn't prepared for...big wheels. Big wheels with handles. Right away I started to tear up. I tried not to let it show, but I see Liz once a week and she knows me well by now. She knew that I would need a few minutes to adjust after seeing these wheels wheels that I didn't think that I would see for awhile yet) so she did what any nice person would do, she pretended like she didn't see the tears in my eyes. She just kept on talking so I wouldn't have to. (Just one of the reasons why I love her.) She started telling me that this thing that to me looked very much like a wheelchair, was actually a mobile stander. She explained that this was a way for Grey to be upright and moving, just like all of his peers. As we were putting him in it, I could see the look on Grey's face. He was not excited about being strapped in and was squirming and trying to get out until...he discovered that he could move these big wheels all. by. himself. He started off by just moving one. Forward and back, back and forward he went. Soon, he discovered that he could use BOTH hands and that he could CRASH into the walls (his favorite part). With each passing movement his smile got bigger and bigger. The more I saw him smile and moving and having FUN, the more OK I became. It was easy for me to see that this was so good for him. This is just one example of Grey, my sweet little 17 month old, being ready for something long before I am. Everyday he teaches me something. Some days he teaches me to be patient, some days he teaches me to be determined, on this day he taught me to open my mind and except whatever it is that can help him.
..whether I am ready or not!
Monday, July 26, 2010
Field trip to the zoo
This week, Esther-Faith's preschool class went on a field trip to the zoo. She LOVES the zoo. This time, we tried something new. She wore her braces while sitting in her wheelchair so that she could get out from time to time. It seemed to work, but after a while, I could tell that she was uncomfortable and tired. I also didn't take her walker into the zoo. So, when she got out of the wheelchair, she had to hold onto me or something else.
I think she enjoyed the extra bits of freedom.
And she gave me lots of opportunities to snap some photos.
All in all, it was a great trip to the zoo. VERY hot. EXTREMELY humid. But fun.
Lately, Esther-Faith has been somewhat resistant to continuing to learn the crutches. As we walked around the zoo, there were lots of opportunities for me to gently emphasize that crutches sure would be nice. She is persistent--she kept reminding me that a walker would be useful, too.
Sigh.
We've also been working on independent wheelchair use instead of us pushing her all the time. Instead of being behind her, I can walk beside her--holding her hand--while she navigates her chair with the other. She is still learning that in order for us to keep up with her at the pace she wants to go, we've got to jog. And she's still learning to ALWAYS make sure she can see one of her grownups. But, we keep practicing. Giving her opportunities to gain some independence within some very clear boundaries. But she is persistent. And VERY fast.
Sigh.
When we got home from the zoo, she ate a big lunch and took a LONG, peaceful nap. We're going to keep practicing. The wheeling and the walking. The holding on and the letting go. Eventually, she'll spread her wings and soar.
I think she enjoyed the extra bits of freedom.
And she gave me lots of opportunities to snap some photos.
Esther-Faith LOVES the polar bears.
One of them is named Aurora.
We watched one catch a fish and eat it.
For a while, we were the only ones watching the penguins.
She walked back and forth holding onto the glass.
This penguin followed her every move.
Watching the new, baby manatee.
Esther-Faith was SO excited that the turtle touched the "grownup."
The carousel conductor took this photo.
He was super nice.
While seeing and watching the baby gorilla
cemented her decision to become a "doctor for animals,"
She was much less sure about this guy.
In fact, she wheeled away from him, and turned her chair.
He mimicked her by turning his back.
They watched each other out of the corners of their eyes.
She inched closer.
He turned a little.
She leaned in close to the glass.
He turned and made this pose, staring right at her!
Always a favorite: The flamingos.
Cause they're pink.
Cause they're pink.
All in all, it was a great trip to the zoo. VERY hot. EXTREMELY humid. But fun.
Lately, Esther-Faith has been somewhat resistant to continuing to learn the crutches. As we walked around the zoo, there were lots of opportunities for me to gently emphasize that crutches sure would be nice. She is persistent--she kept reminding me that a walker would be useful, too.
Sigh.
We've also been working on independent wheelchair use instead of us pushing her all the time. Instead of being behind her, I can walk beside her--holding her hand--while she navigates her chair with the other. She is still learning that in order for us to keep up with her at the pace she wants to go, we've got to jog. And she's still learning to ALWAYS make sure she can see one of her grownups. But, we keep practicing. Giving her opportunities to gain some independence within some very clear boundaries. But she is persistent. And VERY fast.
Sigh.
When we got home from the zoo, she ate a big lunch and took a LONG, peaceful nap. We're going to keep practicing. The wheeling and the walking. The holding on and the letting go. Eventually, she'll spread her wings and soar.
He gives power to the weak
and strength to the powerless.
Those who trust in the Lord will find new strength.
They will soar high on wings like eagles.
They will run and not grow weary.
They will walk and not faint.
Isaiah 40:29, 31 (NLT)
Sunday, July 25, 2010
Sharing the Journey
In just 3 days I will get to meet my little Brooklyn. Just writing that blows my mind. I feel like we’ve already been through so much together, and now – finally -- we get to meet face to face. That thought both thrills me and scares me. I am so excited to finally tell her how much I love her in person, but I also know that there will be a lot of raw emotion as we find out exactly what some of her challenges might be. I admit, that is scary.
But, honestly, what scares me the most are the days immediately following her birth. When I am stuck in the hospital recovering while she is in a separate hospital receiving her first surgery. My husband will be with Brooklyn, and I will be relying on phone updates. My other two children will be at home with my sister-in-law. And there I will sit – totally helpless.
That day has haunted me more than anything else these last several months. I am not the type of person who easily asks for help, and on this day, I will need to rely on everyone else to take care of the most precious things in my life. This goes against every ounce of my being and makes my heart physically ache. But I have no choice.
In thinking about this day, I have come to a very important decision: This journey is going to be hard, and it’s going to have to be shared. I am only one person and as much as I am going to want to do it all on my own, I know it won’t be physically -- or emotionally -- possible. I am going to need help.
Thankfully, I have been blessed with a wonderful family and support system that has more than offered their assistance. The hard part is accepting that help and then actually telling people what I need. As my Mom has told me, “You will need to be the quarterback.” Of course, my husband is going to be a part of all of this, but he will also be bouncing around between the hospital, work, and home.
For the first time in my life, I am going to have to allow myself to fully rely on others and then accept that this does not indicate failure. In fact, I have to view it as a gift. A gift that will not only provide tangible assistance, but more importantly, will provide comfort as I realize that I will not be going through this alone.
A gift of peace. Of community. Of love.
What a wonderful lesson God is teaching me. Yes, He is always there for us, but He has also provided people in our lives to physically help us when we feel it is all crashing down, and we just need a hug, a babysitter, or some eggs.
I have asked my Mom to be with me on the day of Brooklyn’s surgery, and I have asked my Mother-in-law to be with my husband so that neither one of us has to be alone. My girls will be at home getting more than enough love and attention from their aunt, and Brooklyn will be in the hands of amazing doctors and nurses that will provide the best care they can for her.
Yes, I will share this journey. And I will allow myself to joyfully accept each and every gift I receive along the way.
But, honestly, what scares me the most are the days immediately following her birth. When I am stuck in the hospital recovering while she is in a separate hospital receiving her first surgery. My husband will be with Brooklyn, and I will be relying on phone updates. My other two children will be at home with my sister-in-law. And there I will sit – totally helpless.
That day has haunted me more than anything else these last several months. I am not the type of person who easily asks for help, and on this day, I will need to rely on everyone else to take care of the most precious things in my life. This goes against every ounce of my being and makes my heart physically ache. But I have no choice.
In thinking about this day, I have come to a very important decision: This journey is going to be hard, and it’s going to have to be shared. I am only one person and as much as I am going to want to do it all on my own, I know it won’t be physically -- or emotionally -- possible. I am going to need help.
Thankfully, I have been blessed with a wonderful family and support system that has more than offered their assistance. The hard part is accepting that help and then actually telling people what I need. As my Mom has told me, “You will need to be the quarterback.” Of course, my husband is going to be a part of all of this, but he will also be bouncing around between the hospital, work, and home.
For the first time in my life, I am going to have to allow myself to fully rely on others and then accept that this does not indicate failure. In fact, I have to view it as a gift. A gift that will not only provide tangible assistance, but more importantly, will provide comfort as I realize that I will not be going through this alone.
A gift of peace. Of community. Of love.
What a wonderful lesson God is teaching me. Yes, He is always there for us, but He has also provided people in our lives to physically help us when we feel it is all crashing down, and we just need a hug, a babysitter, or some eggs.
I have asked my Mom to be with me on the day of Brooklyn’s surgery, and I have asked my Mother-in-law to be with my husband so that neither one of us has to be alone. My girls will be at home getting more than enough love and attention from their aunt, and Brooklyn will be in the hands of amazing doctors and nurses that will provide the best care they can for her.
Yes, I will share this journey. And I will allow myself to joyfully accept each and every gift I receive along the way.
Saturday, July 24, 2010
Redecorating
As you can tell, ive done a little redecorating around here.
What do you think?
Honestly I'm not quite sure myself So it wont hurt my feelings if you don't like it.
Is it easy to read?
Easy to find things?
Nice to look at?
Hard on the eyes?
I think and think and think about all these things, but honestly need some opinions. suggestions would be fantastic too!! : )
thanks!!
What do you think?
Honestly I'm not quite sure myself So it wont hurt my feelings if you don't like it.
Is it easy to read?
Easy to find things?
Nice to look at?
Hard on the eyes?
I think and think and think about all these things, but honestly need some opinions. suggestions would be fantastic too!! : )
thanks!!
The Balancing Act
Have you ever heard the saying..."life hangs in a balance"? I really hope it is a saying and that I just didn't make it up. Just go with my for a moment and let me expound on my madness this morning. I have been thinking about this a lot this week. I usually do my best or worst thinking while I am working in the middle of the night.
You may be asking...."What could the image of the scales of justice have to do with Spina Bifida"?
Here it is.... That's really me standing there. I am young and beautiful and dressed nicely. I love saying that out loud.... It is obvious I take really good care of myself. What a trim waistline and buff shoulders I am sporting! Not just any Mom can handle a sword like that. All the experiences of my life have given me the strength to hold those scales. Its those scales I want to focus on for a moment.
In my life, I would call one side of those scales family life and the other side would be Spina Bifida. The balancing act comes into play when the weight of one side tries to take over the other. The activities of my older children always have to accommodate the needs of Madilyn. A schedule is so important in her life. Being able to participate in their activities requires planning. When we fail to plan than "Spina Bifida" wins out. When I take the time to plan for little things that she needs it all balances out. The flip side is the same. Taking the extra time to make sure everyone in our house knows what appointments are coming and what is needed for Madilyn it keeps them balanced. We each can plan accordingly and support each other.
Now back to that lady holding those scales. If you notice there are some other interesting things about her. She is blindfolded and she is standing on a strong base.
I often feel like I am wearing a blindfold. Let me explain once again.... I consider myself a well informed Mom. I have researched and studied and read medical journals until I could quote what they will say. I am always well prepared for our appointments and challenge anyone who wants to stall our progress. But, at times that blindfold appears when I lest expect it. Right now the future is unclear. I don't have a magic eight ball to ask if Madilyn's spinal cord has re-tethered. But, because I have walked this path 3 times we know the signs. We recognize the changes and we know how hard it will be for her. But, the picture is unclear. Yet, the woman holding those scales is still strong because of the base that holds her up. For me it is my family and friends and all of those who love our sweet Madilyn.
As each of us balance the scales in our life, let us remember to take care of the woman holding those scales. When we take care of ourselves and our needs it doesn't throw us off the balance. It only makes us stronger and more capable. This upcoming week is full of appointments for Madilyn. I hope I will be prepared to raise my sword if I need to!
Thursday, July 22, 2010
Being Realistic Can Bite you in the Hiney
So I consider myself a pretty realistic person...okay well not always, but when it comes to Toby's medical condition. Realistic.
We read up on Spina Bifida. Researched his specific level. Talked to therapists, doctors, specialists. Anyone at all you would give us an answer on what his condition would look like down the road. We thought we had a pretty good grasp on it. Honestly, I thought I had a pretty excellent grasp on it.
I thought that realistic was the best way to be. Expect the worst and be surprised if something better happens. Well, sometimes being realistic can really bite you in the hiney. (rear, booty, butt) whatever word your family uses.
I know Ive written this before, but I feel like its so important Im going to write about it again. I have cried tears that never should have been. I mourned things that would not be in Tobys life that are most definitely in Toby's life. I ached over missed opportunities and activities that now are just normal for us.
Havent we all heard this? (or at least a lot of us) Your child might walk for a little while, with a walker or some type of device but will eventually be in a wheelchair full time. It's the way it goes with these kids.
Well, Id like to take this time to stick my tongue out at all of those people!!!
I believed what they said. Believed what they told me based on their "medical expertise" And then I mourned the things I was told we would miss out on. Toby never walking by himself, Toby using a wheelchair majority of the time.
Now, yes there is a point where you have to be realistic about your child's condition, BUT COME ON!! Don't slump your shoulders in defeat. Don't nod your head at every Doctor and assume they know. Get up and Push your child and if you have a therapist who isnt pushing your child FIND A NEW ONE!!!
I dont always give you guys the reason for why I write what I write, but today I am. Today Toby stood BY HIMSELF for the first time. No walker, no table, no arm crutches. BY HIMSELF. Today I was told "Your son should be walking by himself in no time!" I walked out of that office in shock. Is this really my life? Is this really Toby's life? Did he really just do that? Is this really going to happen?
And then I thought, What would have happened if we hadnt ended up with an incredible therapist. What would have happened if we had lost our last one and ended up with one who was content to help him in his walker, and help him in his chair? I would have trusted them and would have assumed that everything was going according to plan. It would have been the realistic route.
I say they can take their realism. I'm ready to push and reach and dream. I'm ready to picture my son with out a walker. You know? Is it going to hurt if it doesnt happen? Yes. Will I cry? Most likely. But no more than I have already cried being realistic.
So I say we stop taking large doses of realism and start being willing to dream a little. Dont letting being realistic bite you in the hiney.
We read up on Spina Bifida. Researched his specific level. Talked to therapists, doctors, specialists. Anyone at all you would give us an answer on what his condition would look like down the road. We thought we had a pretty good grasp on it. Honestly, I thought I had a pretty excellent grasp on it.
I thought that realistic was the best way to be. Expect the worst and be surprised if something better happens. Well, sometimes being realistic can really bite you in the hiney. (rear, booty, butt) whatever word your family uses.
I know Ive written this before, but I feel like its so important Im going to write about it again. I have cried tears that never should have been. I mourned things that would not be in Tobys life that are most definitely in Toby's life. I ached over missed opportunities and activities that now are just normal for us.
Havent we all heard this? (or at least a lot of us) Your child might walk for a little while, with a walker or some type of device but will eventually be in a wheelchair full time. It's the way it goes with these kids.
Well, Id like to take this time to stick my tongue out at all of those people!!!
I believed what they said. Believed what they told me based on their "medical expertise" And then I mourned the things I was told we would miss out on. Toby never walking by himself, Toby using a wheelchair majority of the time.
Now, yes there is a point where you have to be realistic about your child's condition, BUT COME ON!! Don't slump your shoulders in defeat. Don't nod your head at every Doctor and assume they know. Get up and Push your child and if you have a therapist who isnt pushing your child FIND A NEW ONE!!!
I dont always give you guys the reason for why I write what I write, but today I am. Today Toby stood BY HIMSELF for the first time. No walker, no table, no arm crutches. BY HIMSELF. Today I was told "Your son should be walking by himself in no time!" I walked out of that office in shock. Is this really my life? Is this really Toby's life? Did he really just do that? Is this really going to happen?
And then I thought, What would have happened if we hadnt ended up with an incredible therapist. What would have happened if we had lost our last one and ended up with one who was content to help him in his walker, and help him in his chair? I would have trusted them and would have assumed that everything was going according to plan. It would have been the realistic route.
I say they can take their realism. I'm ready to push and reach and dream. I'm ready to picture my son with out a walker. You know? Is it going to hurt if it doesnt happen? Yes. Will I cry? Most likely. But no more than I have already cried being realistic.
So I say we stop taking large doses of realism and start being willing to dream a little. Dont letting being realistic bite you in the hiney.
Sunday, July 18, 2010
I am a new contributor to The Journey, and I am more than honored to be here. I know I have already learned so much from the awesome moms who have shared on this blog, and I can only hope that our story might help others as well.
I am 38 weeks pregnant with my third daughter, who we have named Brooklyn Hope. At our 18-week ultrasound, we found out that she has Spina Bifida. Specifically, she has myelomeningocele, as well as clubbed feet and hydrocephalus. Of course, this was a total shock. We have two healthy little girls, Emma (4 years old) and Kendall (2 years old), and both pregnancies were very easy. In fact, this whole pregnancy was a total surprise. We thought we were perhaps done at two children, but clearly God had other plans.
And, honestly, that is what has made this whole experience a blessing in so many ways. My Christian faith has taken on a whole new meaning since we found out about Brooklyn. Yes, the night we found out about her condition was one of the worst nights of my life. I cried and cried all night long. My heart ached more than I ever thought it could, and my mind kept replaying the ultrasound appointment over and over in my head. It was like a movie reel I just couldn’t stop.
But then the morning came, and God literally picked me up. He carried me through the night, but now He was ready to guide me, to help me take the first step of our journey with my eyes focused on Him. And I haven’t been the same since.
This may come as a surprise to some of you, but I can honestly say I have never once been mad at God for giving our family a child with Spina Bifida. Not once. Why would I be mad? She is my child, and I love her no matter how He has decided to make her. The question has never been “why?” for me. Because, honestly, why not? We have two healthy children already, and we can take care of Brooklyn. No parent or child deserves to go through this, so why not us?
For me, the question has been “how?” On my “bad days,” the “how” can overwhelm me as I try to imagine what life will be like when Brooklyn arrives. How will I be able to balance the Mommy time between all of my girls? How can I possibly watch my baby struggle through life? How can we afford all of the ongoing medical needs? How am I going to manage all of the stress, all of the heartbreak? And on and on and on…
Thankfully, I have been able to find the answers to most of those questions through my faith. There are so many ways God has already used this experience to bring me, my family, and others closer to Him that I am overwhelmed. He has truly made me feel blessed to be the Mommy of this little angel, and I can’t wait to meet her. Yes, I am scared of all the unknowns and the challenges ahead, but more than that, I am excited to rub those little feet and look in her eyes and know that she is truly meant to be a part of my life.
I am 38 weeks pregnant with my third daughter, who we have named Brooklyn Hope. At our 18-week ultrasound, we found out that she has Spina Bifida. Specifically, she has myelomeningocele, as well as clubbed feet and hydrocephalus. Of course, this was a total shock. We have two healthy little girls, Emma (4 years old) and Kendall (2 years old), and both pregnancies were very easy. In fact, this whole pregnancy was a total surprise. We thought we were perhaps done at two children, but clearly God had other plans.
And, honestly, that is what has made this whole experience a blessing in so many ways. My Christian faith has taken on a whole new meaning since we found out about Brooklyn. Yes, the night we found out about her condition was one of the worst nights of my life. I cried and cried all night long. My heart ached more than I ever thought it could, and my mind kept replaying the ultrasound appointment over and over in my head. It was like a movie reel I just couldn’t stop.
But then the morning came, and God literally picked me up. He carried me through the night, but now He was ready to guide me, to help me take the first step of our journey with my eyes focused on Him. And I haven’t been the same since.
This may come as a surprise to some of you, but I can honestly say I have never once been mad at God for giving our family a child with Spina Bifida. Not once. Why would I be mad? She is my child, and I love her no matter how He has decided to make her. The question has never been “why?” for me. Because, honestly, why not? We have two healthy children already, and we can take care of Brooklyn. No parent or child deserves to go through this, so why not us?
For me, the question has been “how?” On my “bad days,” the “how” can overwhelm me as I try to imagine what life will be like when Brooklyn arrives. How will I be able to balance the Mommy time between all of my girls? How can I possibly watch my baby struggle through life? How can we afford all of the ongoing medical needs? How am I going to manage all of the stress, all of the heartbreak? And on and on and on…
Thankfully, I have been able to find the answers to most of those questions through my faith. There are so many ways God has already used this experience to bring me, my family, and others closer to Him that I am overwhelmed. He has truly made me feel blessed to be the Mommy of this little angel, and I can’t wait to meet her. Yes, I am scared of all the unknowns and the challenges ahead, but more than that, I am excited to rub those little feet and look in her eyes and know that she is truly meant to be a part of my life.
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