Saturday, July 31, 2010

Preparation Week

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.

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 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, 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.


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 never know what doors will open up in time.

Wednesday, July 28, 2010


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. 

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!

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.

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.

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.


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.


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.

Saturday, July 24, 2010


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!! : )


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.

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.

Saturday, July 17, 2010

This week I have spent a lot of time reflecting on our journey. The thoughts shared by the most incredible women this week on this blog have stirred my emotions in ways that I did not expect. I wanted to post comments and tell them how much I appreciated their thoughts but every time I tried the tears got in my way. It frustrated me....

There are times when we need others to remind us to grow and stretch and reach. It is easy to become complacent and accept things when challenges push us to the edge of sanity. That edge can be a new medical crisis that you were not prepared for, a stack of medical bills or insurance issues. It could also be disappointments when milestones are delayed or unmet.

What I discovered this week was..... Rain is needed in order for us to experience the joy of the "Rainbow"! Complacency clouds our vision.

We all can't run full steam ahead at every moment of every day. We may have days when the minimum is all we can do. That is OK. We need to allow others to help us or simply lift us by sharing in our experiences.

I asked myself the hard questions this week... Do I really believe?

I had to refocus somethings that we have been slacking on...... I found it easier to let Madilyn take off her compression stocking than listen to her complain her leg was hot. I have a list that could go on. However, because I do "believe" and want the best for Madilyn I have adjusted my actions to make sure that they reflect my belief in her and her abilities to succeed.

Thanks to those who reminded me of these things this week.

Wednesday, July 14, 2010

Do you REALLY believe?

Do we really believe in our children the way we say we do? Or do our actions really prove that belief?

Isnt it always true, what our mommies, daddies, aunts, uncles, grandparents, sunday school teachers..pretty much anyone and everyone.

Our ACTIONS speak louder than words!!

At the age of 3 Toby was barely walking. He would take some steps with his walker here and there, but still loved crawling and I sure didnt mind him being happy. If anyone had asked me I would have said, my child will walk someday, my child has the strength to walk, I believe in his ability. The key word for me was...Someday. (spina bifida is always a waiting game anyway right?)
I would take his walker with us to the store, but then leave it in the car for the rest of the afternoon. I would work with him one evening diligently but then the next three never even ask him to take a step. At the age of three Toby was not walking and even though I believed, I had faith, I knew oneday...My ACTIONS were speaking much louder than my words.
I enabled Toby from the age of 2 - 3 to be free to crawl around, free to play how he wanted to, free to just be a kid. (which granted are all great things) But at the same time I rarely pushed him to push harder to work more to grow stronger. With my actions I was teaching him how little my faith was, how small my belief was and really how unimportant it really was.
Now, honestly, this is a bummer post to write. Id like to consider myself The mom who works her butt off, the mom who tries it all, fights for her child and never gives up. But from age 2 to 3. I had given up. I hadnt really fought. We had a therapist I was comfortable with. She wasnt really pushing Toby, but I was comfortable with her. She didnt push me to do much more either. I was content with my little faith and my small belief.
Then Toby turned 3. He got to old for his current therapy program and we got Todd (a new therapist) And then I had the meeting with our Ortho. He said, "If he doesnt walk soon. He wont walk." Catch that. My little belief of someday was getting challenged and smacked down. "If he doesn't walk soon. He wont walk." Thats when the rubber met the road. Todd showed me that therapy doesnt just happen at the office. I cant pretend to be the mommy who pushes her child and believes in all the incredible things he can do. I cant just talk the talk. I have to walk the walk..not even just walk but RUN!I had to drag that walker everywhere. I had to make a 2 minute walk in a parking lot a 10 minute walk. I had to look the other way when Toby wanted my help. I had to show Toby my belief. I had to show him my faith. The way I did that was by pushing. I had to hear him cry about his walker. I had to watch him struggle to get used to playing without crawling around. You know though, everytime it worked, my faith grew. My small belief began to grow and it gave me true strong belief. It was hard to sit back and realize how much I enabled his dependence on me. How I enabled him to crawl up until the age of 3. Its hard to sit here and admit that to all of you, but its true.

I share this with you as an encouragement..hopefully. Are you the mommy pushing the toy closer to your child? Are you the mommy holding the bottle or sippy cup still? Are you the mommy keeping the walker in the side room or not wanting to strap those stinkin braces on one more time? Is it hard? absolutely!!! Does it hurt? 100%!! Is it totally and completely worth it to show your child how much you believe in him/her? I have absolutely no doubt.

Now dont get me wrong. There are times and places and days for all of these pushes. Toby knows how to unbuckle his seat belt, but somedays I still do it for him, just cause I'm his mommy and I can. Not every moment is a pushing moment.

But maybe just time when you are tempted to leave that walker put or take your big toe and push the toy a little closer...Maybe you'll think twice. Because I dont know about you..I want to ALWAYS show Toby how BIG my faith is and huge my belief is!!

Tuesday, July 13, 2010

This week I experienced a very hard "my baby should do that, and he is not" moment, and I survived. :) Six weeks after Carson was born a very good friend of mine had a baby girl. She is beautiful and healthy--- which I am so so thankful for, and I am so happy to share in the joy of her growth and development. But, as you other moms know, it is hard when these moments happen. It is a challenge not to break down, and run in a dark corner to hide our tears. And it was hard this time again. We were taking pictures, ( we tease that this will be Carson's future wife) and while I was still having to give Carson a little support to keep him sitting upright, she leaned over and crawled away. Of course, this was like a gut punch, again. But, girls I took that punch, and breathed in probably one of my biggest breaths, then I quickly prayed, "Lord, give me strength, give me courage, give me comfort in your PERFECT will." Immediately I was able to laugh as we both tried (me with one arm since I was still holding Carson) to tie her down and get a good photo.

These moments will happen for all of us, and all of us can take comfort in knowing we are not alone. We have each other and we do have a wonderful God who really does have a PERFECT plan for our children.

Monday, July 12, 2010


I did a post over on my blog about swimming and how to prevent drowning. Long story short, my nephew was swimming with his dad (yes, his dad was in the water right next to him) when he went under and didn't come back up. My brother-in-law noticed what was going on and pulled him from the bottom of the pool. He was taken to Children's, and after a few hours of observation, he was sent home.

He will be fine, but it was scary. And I'm already afraid of large, open bodies of water. Oh, I can swim. I just don't like to. I scares me.

But the more I thought about it, the more I thought about how much my kids LOVE the water. Being in it. Swimming. Putting their heads under. And I KNOW it is good exercise. So, instead of continuing to dwell in the "what ifs" of what happened on Sunday, I started looking for some positive stories about swimming--specifically the benefits of swimming for someone with Spina Bifida.

Like this:

And this:

Like this:

And this:

Note: All links will open in a new window.

There are TONS more. Stories of children and adults swimming for exercise. Swimming for fun. Swimming to win. Stories of triumph. Stories of sacrifice. And I remembered that there is danger everywhere--yes, especially in the swimming pool. But there is also great benefit to learning to swim.

And I can't wait to get Esther-Faith into lessons later this month.

Wednesday, July 7, 2010

My letter

I wanted to share the letter I just wrote to the friend I thought of.

I had to write this instead of call you : ) I would have cried!
I recently wrote on my blog encouraging the women to write to a person who helped them through the diagnosis and birth of their baby with SB. I immediately thought of you. You might not have been there in the beginning but you sure made up for it the moment i met you. I know right now you are at a point in your life when you are receiving encouragement more than giving it out, but I want you to know that our first year here you truly helped me more than anyone in the world. I was hurting, uncertain, scared out of my mind and really didnt want too much to do with "healthy" children around toby's age. You treated me normal and didnt let toby's life get in the way of our friendship. you and aaron have never given us the sympathy looks like others or treated us any differently. You loved us regardless and loved toby the same. you didnt love him more or less because of his disability. You didnt give me a choice to be friends with you and you didnt give me a choice not to love sawyer (is her little boy that is toby's age)(which i still do) and for that I am thankful. Had you been stand offish and unsure i dont know what I would have done. God knew that I needed you and your family. Watching aaron throw Toby around treating him like any another boy did my heart so much healing. The day in nursery when I broke down and cried in front of you because of all the things that were hurting. You didnt say any perfect words. You cried with me and hugged me and thats what I needed.
So thank you. thank you for being that friend.
I love you and dont know how i would have survived the first year of moving, surgeries, ER visits, therapy and all kinds of stuff that went with it without you and Becki!

Tuesday, July 6, 2010


I so enjoyed this past week with the stories from family and friends points of view. So many people are affected by the diagnosis of Spina Bifida. Siblings, grandparents, aunts and uncles, and of course friends. When we first find out about a pregnancy we picture that child, his/her life, their personality and all that goes along with childhood.

I remember looking across at my husband driving from the doctor's office and my heart just broke. I knew how much he would have looked forward to teaching Toby football, basketball, Tball. You name it. At that time I felt like all those dreams were left back at the doctor's office. I felt like because this was his son, his first son, he grief really was greater than mine.

The funny thing about that is I THOUGHT those dreams were left at the doctor's office, but really they came with us. They just changed and were reshaped. We still plan on basketball for Toby just in a wheelchair, we still are eagerly looking forward to the day he's old enough for Tball just in a walker(one more year to go) and he loves throwing the football around.

During those first few weeks of finding out his diagnosis I mourned a lot. I mourned the loss of a child that I thought we would have. I mourned the loss of his legs, of his bladder and bowel function, of the life he would share with gracie. I mourned and mourned and mourned. I just wish looking back at that time that I would have realized what Toby was going to be.

How his life was going to take shape. How many things I cried over that are just normal now. Things that broke my heart in the beginning arent anything like what I pictured them to be. The imagination is always more dramatic than reality.

We just do things differently. But we still go out and live our lives. Our lives are still filled with an incredible joy and peace. Yes, I have my rough days. But overall life is wonderful and Spina Bifida is just part of it.
Luckily for me there are numerous people that share those rough days with me. There are those who went through the diagnosis. Who struggle with the pain, and who now are equally amazed at how incredible our life is. I thank God for the ones who struggle along side me, who cry with me and then who rejoice and laugh when I realize, 'hey that's not so bad."
I hope some of you who have been following this blog are encouraged. I pray you find hope in our words. For those of you have been through this who have older children. Myabe children who are even adults now. Let me challenge you to pick up a pen or sit down and write a email to those people who supported you, prayed with you, cried with you and rejoiced with you as they met the baby that would change your life forever. Sometimes, it so easy to forget or to think that they know how you feel about them, but its always a good idea to remind them.

Sunday, July 4, 2010

Friends and Family

Kari asked us to have a friend or family member write our post for last week. I asked my 13-year-old son, Isaiah, if he would be interested. He was nine when his sister was born and hadn't even been our son for a full year. We adopted our sons and had our daughter all in our first year as parents. In addition to ADHD, ODD, and CD, Isaiah has Reactive Attachment Disorder (link will open in new window), and his only positive attachment is with his sister. These are his words. This is part of his story...

Hello! My name is Isaiah. I am 13 years old. I was nine years old when I found out that my brand new baby sister had Spina Bifida. I was nine years old when my life changed forever, and it has made me the brother to a sister who I never knew would have to go through so much just to take a step.

When I found out that my sister, Esther-Faith, had Spina Bifida, I did not know what to do. All I knew is that I had a sister. But when I walked into that room, I heard the news, and I realized just then that I would have to work harder.

I was trying to be helpful by staying out of the way. I didn't want to get in the way of the doctors or the choas. We already had enough of that! I tried to do little chores for my parents as well.

Spina Bifida wasn't exactly anything I wanted for my little sister. I hate to see her watch other kids do things that she can't do. It hurts me so much and I can't do anything about it. I was startled to hear that my sister had Spina Bifida. It spooked me out. But when I met that little, tiny baby, I realized it didn't matter if she had Spina Bifida or not, she is my sister. Now, I feel the same thing. Four years and six months later, she is still my little sister.

I honestly did not do any research on Spina Bifida. I did not really know how to use a computer and it did not come to my mind. I was too busy rushing around staying out of the way. But thinking about it now, I probably should have.

It is really hard to see my sister go through surgeries and to have to watch it happen. It breaks my heart. This January, when my sister was in the hospital, I didn't know what to do with myself. Should I feel sad? Surprised? Worried? Scared? All of these? I didn't know. But now I know. Even when she has surgeries or hospitalizations, or has Spina Bifida, I can believe one thing... actually two things. These two things I hold on to. Wherever I am, I take them with me. 

The first is that I love my sister. 

The second is that I won't ever let her go.

Saturday, July 3, 2010

The Glue that holds me Together......

I thought about my support system all week. I wish I would have made time to have my family submit their thoughts and feelings about our life ever since my sweet Madilyn was born. But, it was a fragile week emotionally for me and my mind was consumed with concern over changes happening to my little girl. So, instead of hearing the thoughts of my family and friends and I thought I would share with each of you what they mean to me in my every day life.

Lets start at the beginning.... I was teaching a summer program for the Theatre and was on a break when I went into the bathroom and took a pregnancy test. My "personal assistant" came to find me and I told her the news. We laughed and cried.... I had lost a baby on Thanksgiving Day the previous fall. I was worried and knew that I was in trouble cause my blood sugar went through the roof. She held me together and to this day I love Ms Emily.

I told my husband next..... he smiled. He knew that it would be hard and my life would get complicated. I had lost one body part with each of my previous pregnancies and I had no more expendable parts. He was concerned but held me together through sickness and insulin shots and everything else that came our way.

My family means the world to me. Telling them I was pregnant again did not go so well at first. They were very concerned about my health. After the shock wore off....the all rallied around me. I was determined to bring our little one into this and sound. I was able to share the experience closely with my Mom. I drove and hour to her house to pick her up to head to my appointments with me. She would finish the journey to the doctor with me and then it was a trip to the mall and a treat out. It was a special time for me. She held me dad held me together as well as my sister, brother and the rest of the crew. My beautiful children held me together...

I remember the perfect morning that Madilyn was born. My pregnancy had gone better than I could have expected and my diabetes was under tight control. Dr. Gorrell held me together....when my world changed. He was full of faith and tenderness as he helped me process the unknown. We had no idea that Madilyn would be born with Spina Bifida. There was no indication from any ultrasounds or tests. I had them all. Maybe this was a tender mercy from above.

After Madilyn's birth, our lives changed. Our small town community rallied around us. Every church congregation and denomination offered prayers and support. My children were looked after when I was away. Meals were brought to my family and endless phone calls were taken. This scenario has been repeated each time we have faced a new obstacle. There have been so many endless acts of kindness that have been shown to my family. We no longer live in our small town in VA and we have experienced the same love here in Atlanta.

I could not have endured this path with Madilyn without these people in my life. I always say that when things are going well its time to prepare because crazy is always around the corner. The friends and family that make my life complete understand this and are always ready to hold me up and they ask nothing in return.

Faith precedes the Miracle...and when I am tired and my faith might be lacking...theirs is not...especially the faith of my husband. My life is blessed beyond measure....

Friday, July 2, 2010

Family/Friend for Karen

I've known three families in my life with a Special Needs child. The 1st wasn't as sobering or frightening as the other two, but he had needs none the less: Luke was born with his left eye missing. He has the lid and socket, but no eye. I remember his mother's testimony to us when the dr. leaned over and solicitously (if somewhat piously) said "Now, we don't know why things like this happen," and she laughed joyously and said "Because God wants them to!" Kind of set the poor man back.

Then I have a second cousin with Down's Syndrome. His parents, God bless 'em, never treated Jimmie Lee any different than any of their other kids. Jimmie Lee has grown up in a loving home, loved for who he is and is loving in return. His parents never questioned God or asked why, at least not in public ... tho' I'm sure "why" is a question that God is asked frequently. The point is, they chose to trust and thank God, instead.

But I'd never met anyone who God had given the gift of Spina Bifida to, until it was a family in our church. Karen and Bob and the gift of Carson. Why do I say "the gift of Spina Bifida"? Because, as the song says, "God is too wise to be mistaken, God is too good to be unkind; when you don't understand, when you can't see His plan, when you can't find His hand trust His heart." All children are a gift from God and some children God uses in a unique way to show His loving plan to others. Hence, a gift. Karen, Bob and Carson have the joy of being a unique part of God's plan.

God wants us to tell others about His love, but why would a person with a physical disability listen to someone like me, who is whole and healthy in body and mind (tho' my sister might argue the "whole in mind" part!)? Why would parents of a Special Needs child listen to a parent whose children are healthy when they try to tell them God loves them? But, they'll listen to parents who, themselves, have a Special Needs child. They'll listen one day when Carson, wearing braces and using a walker, tells them God loves them, no matter what, and is never wrong, no matter what.

When I heard that Carson had Spina Bifida, my first reaction was "I've heard of this, but I don't know what it is!" Karen didn't mind explaining to the ladies Sunday school, tho' I'm sure it was difficult as she was still trying to deal with it herself. But, Karen is nothing if not kind and generous of heart. So we learned about it right along with her. And, when Carson was born, our preacher simply requested we ladies restrain ourselves from trying to hold Carson until his parents ok'd it (he had immediate back surgery after birth). Carson's first months of life pretty much involved lots of kisses, cooing and women hovering over him. I'm sure he was a bit confused by it all. Once they were sure his back was fine, Carson began to be passed from church member to church member to be loved on. And, while it may have worried his Mom a bit to watch him move out of her arms, she allowed us to share in the joy of this precious Gift from God. No one has made any fuss about Carson’s being “different”, he’s just Carson. A gift from God to be loved and enjoyed.

Today, Carson has worked up to having to wear braces. I'm sure it's not easy, having to do these things to your child, put him in casts, put him through surgery, put him through pokings and proddings other kids don't have to face and then sticking him in braces. But, while willing to share and answer any questions put to them, Karen and Bob never complain. They make it look easy (which I'm sure it's not) and they smile all the time. And they set a wonderful example by thanking God continually for their precious gift.

I ask myself every now and then, how would I handle it if God gave me the gift of a Special Needs child? I have to admit, I don't know, He hasn't asked that of me. I pray it would be with the trust in Him I see in Karen and Bob. A trust, peace and joy they will transmit to their own Gift.

They choose to "trust His heart."

Thursday, July 1, 2010


My name is Larie. I have been best friends with Kari since 3rd grade. I count her more as a sister than a friend. That makes Grace, Toby and Milo my niece and nephews=).

I'm really not sure how to abbreviate the story of the past five years (counting pregnancy) . With Toby I can go back to the pregnancy test that told us that a new life was on the way. About two Months later I found out I was expecting my first. Kari had her "It's a boy!" ultrasound and then two days later found out about his Spina Bifida. Those were some hard days. It was nice to have the kind of friendship where tears can flow freely. I cried with her and without her, but crying with her felt better. My uncomplicated pregnancy became a painful thing. It was such a complicated time.

I can't say there was any game plan as far as support. We just walked through those months together. One thing that helped me deal with feeling helpless was reading up a lot. I did not want to feel clueless as she used medical terms and I just wanted to really understand it myself. Also it helped to know what I was talking about when I ended up being the go to person for friends who were afraid to bug her for updates or make her explain it again.

Toby's birthday was one of the best days of my life. I got to be in the room when he was born, and it was like finally meeting someone you have known forever. I knew how I felt about Grace, and watching Toby come into this world and knowing before hand how I was going to feel about him was huge. It was hard to see him taken away right after birth and to know that this was just the beginning of the lifetime effects of Spina Bifida. At the same time to me from that day on Toby has been a person and a personality and Spina Bifida is the secondary plot of his life.

It has been a long time since the day he was born and there have been many new things to face. I think Toby might hate me if we lived in the same city. I get so excited about the things he does and Toby does not like that kind of attention. It would be hard to down play my sometimes cheerleader - like excitement. From the beginning until now I am so thankful to have a front row seat in Toby's life and to hear daily of his conquests or to just hear about the everyday stuff the three of them get into.

I have loved being a part of his life and even though I am not the best aunt ever (his birthday card is still waiting for a stamp), I love Toby to death (and Grace and Milo). I did not start out trying to be the best support I could be to Kari after his diagnosis. I just cried because I had to; I rejoiced because I could not help it. I think the important thing is to be a part of the story just because you are a part of the story and not because you are trying your best to help the parents. Life is hard, and we need each other. I have needed Kari in my life, and she has always been there for me.

One of my favorite pictures ever: a sleeping Toby on my very pregnant belly.