Wednesday, December 30, 2009

My most recent project

I know..its always something with me. But I've got a new project right now. I've been working on for about a week. give or take a few days.

www.spinabifidakids.blogspot.com there is a link on the right of my blog.

Im super excited about this because I think it is NEEDFUL! It is so hard to sit and google tons of information regarding spina bifida and all the MANY MANY areas of these kids lives.

I am hoping to have others contribute ideas and for it to slowly start growing into a site that is easy to search and easy to find ideas.

It is also a place for all the SB blogs out there. SO you can see how these kids are doing and how incredily strong they are.

It is also a place for people to donate used medical equipment like walkers and such.

Anyway, check it out when you can.

Saturday, December 26, 2009

Toby's Bike

So, thanks to some incredibly generous people we were able to give Toby his first bike for Christmas this year. It was soooo exciting. I will admit that at first he was more excited about his bike helmet. (for some reason he attributes helmets to being a big teenager.)
I love this video sooooo much. In the first 2 seconds you can hear Nate talking to Toby in the background, "Never give up." Then later on you hear Toby tell Gracie,
"I'm gonna beat you"
I just love that we went outside and the kids got to ride bikes together. HOW AWESOME!! Just wait till Milo gets bigger and gets his first bike.
I am just so incredible thankful. sooo increidbly thankful.
One day I hope that Toby can look back on this and truly understand how many people love him. For now, its just a totally awesome bike with a totally awesome helmet that makes him look like a teenager. : )

Tuesday, December 15, 2009

The Kindess of Strangers

This entry is really supposed to be about the kindness of strangers. Hence the title, right?
Well, I have to preface it with what happened last night.
Toby walked around a store for over an hour with no breaks!!!
Nate had Upward Basketball practice and so I was left with three kids and Christmas shopping to finish up. I've been really wanting them to pick things out for each other this year so they can be focused more on the giving than the receiving. Well, we went out and I brought the sit and stand stroller and Toby's walker. I was feeling pretty stinkin' daring if you ask me! So of course in the process of going into the store, the walker slides down the bar that I have it hooked on and smashes right into Toby's wrist. He cries and I'm feeling quite bad about it. Well, I decide at that point I might as well say goodbye to him walking because his wrist was already looking rough. We got in the store, and I started walking and Toby yelled out, "Hey, you forgot about me walking?" So I got him out and helped him into his walker. He was getting frustrated about his speed, or lack thereof, when this lady walked up to him. He was totally in her way. Instead of scooting pass him or doing the opposite-getting up in his face and patting him, she just smiled and said, "Hey big man, how's it going?" For some reason this stranger totally helped Toby get out of his funk. He told her about his boo boo and told her about how he cried and how he can walk now. She just stood there and listened like she had all the time in the day. Pretty awesome around the Christmas season. Okay that was stranger 1. So after walking around for an hour, dropping things, Toby has fallen twice at this point, and Milo has gotten pretty fussy. I decided it was well past time to go. So we headed to the front of the store to pay for our items. As I was making my way to the door, this guy comes out of nowhere practically running to get to the door before me. (Now, some people will hold the door for me, but then you can see the look on their face when they realize how long it's going to be before Toby actually makes his way all the way through.) Seriously, this guy must have just been waiting for me to leave, because he just stood there smiling like it was no big thing. Then his wife came out and asked where I was parked so they could help me to the car. This makes stranger number 2 and 3. I told them that I was okay, but thank you anyway. Then of course, Toby, who has already accomplished incredible things that night decided he wanted to step off the curb for the first time. Stranger number 4 came flying out the door of the store and said, "Hold on, I'll move my car. That will make more room and be easier." (He was parked next to us.) So he threw his stuff in his car, waved at Toby and backed out quickly just so Toby could step off the curb safely. Then, back to strangers number 2 and 3. They proceed to stand there and wait for me to get safely in the car with all my kids, the walker, stroller and of course all of our goodies. They waved and left.
These people were just strangers. People that I will probably never see again. But wow, how they changed my night. I have noticed in the past week, (the closer it gets to Christmas) that people in general have been much less willing to wait patiently as we cross the street or move out of Toby's way as he tries to see a toy on a certain aisle. People have been consumed with their lives, their schedules and their happy holidays. It has made going out with Toby, Gracie and Milo a little harder this year. However, last night was different. Those four strangers would have done a backflip if I had said it would have made our lives easier. They went above and beyond any general kindness. I am so thankful for those people. Thankful for the people who forget about themselves and just plain pay attention to the needs of others.
So here's my small challenge from this post. (myself included) Pay attention to the needs of others as you are out and about. It's so easy to be caught up in the good we are doing for church members, family and friends that we can forget about the person on the same aisle as us in the store.

Tuesday, December 8, 2009

ER...

So, it had been almost 3 years since our last Spina Bifida-related ER visit. Not bad!! After so many ER visits the first few months of Toby's life I just thought that it would be that way on a regular basis. But here we are almost three years later. Praise God!

Toby had been waking up at night crying randomly and complaining of his head/neck hurting. I didn't think too much of it because it wasn't incredibly consistent. I decided to call our Spina Bifida nurse, and of course it was the usual, "Take him in if he gets any worse." Well, nothing happened Friday, and then Saturday it seemed like all night long. I ended up putting him on some pillows in the living room and sleeping with him out there. I was hoping to keep the rest of the family sleeping.
Well, we went to church and afterward he started telling me he was crying because of his shunt, and that it was hurting during Sunday School. Well, that was enough for me. I nursed Milo, got everyone settled in and Toby and I were off to the ER.

I can not be more thankful to God for how the night went. We had our rough moments, but it could have been so much worse. Toby was truly a champ!! He didn't cry when they put the first IV in. The second one was his undoing.(the first one clotted) Then we went up to CT. About a month ago when we did one he cried his eyes out. This time he said, "Wheeeee." and asked to do it again. The CT guy was nice enough to give him a little ride on the table. Then off to X Rays for a shunt series and again he did awesome. He even told me to stop holding him. He wanted to do it on his own. It was incredible. Then the X ray lady let him play with the dials on the machine. He told her he was going to be a Doctor when he grows up.

After all this (And not eating or drinking because they wouldn't let him), Toby was still a pretty happy camper. Granted he got to cuddle up with Mommy and watch TV most of the afternoon. Then came the results and our neurosurgeon Dr. Tullous. It seems like the pressure that they had adjusted about a month ago was too high for Toby, which was causing the headaches. Once they realized this did not mean surgery for Toby, they brought in dinner. Yeeeeaaah! I am so thankful to whoever came up with the magnetic shunt. They were able to adjust the preasure in about 3 seconds with a simple magnet. INCREDIBLE!

We aren't incredibly sure where we are with all of this. Toby hasn't woken up crying anymore and hasn't complained about his head hurting. However, the doctor warned us that it doesn't mean we are done. We are going in later this week for another CT scan. Hopefully Toby will think it's fun again.

So that's where we stand today medically speaking.

On the flip side. I hate leaving my other two behind for things like this. I am usually exhausted after days like this, but then really just want to spend time with Gracie and Milo. I am so torn between cuddling Toby up because of everything he just went through or throwing Gracie and Milo in my lap and never letting them move again. I really struggle with this aspect of our life. It is a constant battle of balance for me. I am so exhausted that I just want to sleep it off, but I want to make sure my other kids feel loved and important. Monday afternoon, during what was supposed to be nap time, Gracie and I went to Sonic for a quick drink and some talk time. It was nice and much needed. I can't believe how much she is growing up. I wonder how much things like this affect her and how much of this just seems normal to her. I really wonder what to tell her and what to just leave alone. Of course Milo has been able to nurse pretty much whenever he wants and get cuddled. It's hard to balance everything. Really, Really hard. But I'm learning. Slowly....very slowly.

Just another aspect of having a child with special needs. It doesn't just affect the child with the disability. It really is the whole family.

Friday, November 27, 2009

WOW OH WOW OOOOOOH WOW!!

Okay. So of course I tried to title this to be able to get your attention in some way, shape or form. I really wanted people to see this if you couldn't tell. This happened tonight, and I really couldn't wait another day to share it with everyone. The picture is not super impressive since it was done by my incredibly sick husband with his camera phone. Poor guy, he was barely functioning. I know you can barely tell what's going on, if at all. This is Toby and Mommy dancing together for the first time. Now, granted, we've done the crawling dance and the on your knees dance, but never ever ever the hand in hand standing up dance. This is one of those moments that I'm so thankful that I absolutely cannot take for granted. I was able to dance with my son tonight. WOW OH WOW OOOOOH WOW! And it gets even better. I gave him the chance to sit back down, and he asked for his walker. Then Gracie and Toby danced for the first time together. I know that Gracie doesn't understand this and probably doesn't even remember, but about a year ago she was really struggling because her brother couldn't dance with her and she didn't want to dance the way he wanted to. Well, there you go. Gracie and Toby danced. And then it got even better... Toby said, "I want to dance by myself" So he starts kicking his legs and just dancing all by himself. I say pretty impressive, if you ask me!! Here's the video.

I am so thankful for these little moments. I am thankful that Gracie, Milo, Daddy and Mommy all got to experience this together. There is nothing better than sharing the triumph with family. Well, I am very excited about this. So I better calm down now and get ready for bed and go check on my sick husband. Goodnight everyone. WOW OH WOW OOOOH WOW!! : ) God is sooooo good!

The women who write blogs

Well, everyone is sick at my home, which means everyone is taking a nice long nap. It's cloudy outside and I'm avoiding the laundry. Nate is sitting opposite me writing on one of his books. (It's starting to get ridiculous! : ) But I'm proud of him.) So I feel inspired to write on my blog. I always tell him that writing a blog is so much better than writing a book. I don't have anyone telling me to change my grammar or that I am being too wordy. I just write, instant gratification. : )

Today I feel truly sad. The internet can be such a wonderful place of encouragement and insight, but it also opens the door to sadness.

I have so enjoyed being on the BabyCenter website support group for Spina Bifida Kids. It has been more encouraging than I could have even imagined, and for that I am thankful. Today I went on (hadn't been on in a while) and found out that a sweet lady on there has lost her baby girl. She was a baby with Spina Bifida who was going in for a shunt surgery. (These surgeries are usually not a big deal at all.) For some reason something went wrong, and she did not make it out of surgery. My heart just breaks for this mom. I don't truly know her personally, but you really start to get attached to these women as you read about their pregnancies and then their births and now this. I am just genuinely sad. Please pray for this mom.

That's the hard part of the support group. It could be incredible news like a child is walking for the first time or incredibly sad news.

From the site I've enjoyed going to other blogs and reading about their children with spina bifida. Especially a dear lady who is a youth pastor's wife!! (What are the chances??) However, I seem to always stumble over someone else's blog and their incredibly sad story of loss and heartbreak. I've read about a mom who lost her twin girls, a mom who has lost two boys, a mom whose child has multiple disabilities and undergoes multiple surgeries. There is just so much out there. However, I am amazed that a lot of these women still bring glory to God. It seems to be (at least the blogs I find) that the women who write and the women who want to share their stories are also the women who still praise God. Who still trust God. Who still love God. They show God's grace through their lives and through their testimonies. I find it interesting that these are the women who write. We have no better reason to share our stories. We have no better reason to write, but than to praise the God who loves us and who gives us the very breath we breathe.

So, I guess my point is. The internet is sad and there are so many sad stories out there, but in the midst of the sadness there are women who are praising God and for that I am truly thankful. I don't know how similiar are beliefs are, I don't know if we believe all the ins and outs of doctrine and the Bible. But I do see their love for God and their trust in God and again, for that I am thankful.
So if any of you women out there are reading this...Please keep writing...Please keep sharing. You are encouraging my heart. I believe we make a difference, whether or not it be a small difference. We are a living testimony of God's grace.

Monday, November 23, 2009

Full Circle...and reminded once again How great my God is.

Well, it sure has been a while since I've been on here. Don't worry I'm still planning on keeping this up. You see, my problem is I have an incredibly rebellious nature. I know shocking, right? Well, it was recently told to me by an extremely close friend that I am a private person. (that is except for my blog) Well, being the rebellious person that I am, I just didn't feel like sharing all that much on here. If I was going to be a private person then I might as well be a private person all across the board. Why have one venue in which to share, right? Well, wrong and selfish, so therefore double wrong! (The comment by the way was not meant to be an insult in any way shape or form, and I completely understand that. I was being sensitive.) So here I am coming full circle realizing that I might be viewed certain ways even by close friends, but that doesnt mean that I need to stop doing something that has been an outlet for me. A truly wonderful way to open up without having to wait for someone to ask how I am or what's going on. (It's really hard to bring up all the things I've written about in a "How are you" type of answer. It just doesn't flow.)
So I'm back now. It's been an incredibly crazy week to say the least and I have gone through every emotion known to man. However, again God has brought me back full circle. It's wonderful to me how patient God is and how He reminds of who He is and how He is in control of every situation. This week at our church they showed a video from the How Great is our God tour. This was exactly what I needed. This is only a small tiny bit of what helped remind me of how great my God is.
I wanted to share this on here because I know there are moms on here who read who have children who have special needs. Well, this is just one example how God is in control. Hope you have the time to watch. You should Google it and see if you can find the whole thing on line. It was super interesting. Sometimes it is just wonderful to be reminded how Great our God truly is.


Saturday, November 14, 2009

So...the appointment.

Well, I'd just like to say how incredible it is that God takes care of things.

Since I didn't know about the appointment beforehand, I had to bring Milo along with me (he's still nursing) and then of course Gracie to help with Milo. So picture Milo in his stroller, Toby in his wheelchair with Gracie pushing, and Mommy pushing Milo while trying to balance a day's worth of stuff in a bag and a walker. It took forever to get through the parking lot. Luckily Nate (my husband) was able to meet us there just in time for Toby to get called back for his CT Scan.

The problem with the CT Scan was that most kids at Toby's age need to be sedated. Well, praise God, we never have. The problem with that was that we weren't prepared if Toby had needed to be sedated. He had already eaten that morning. So they warned us that we would be sent home if he didn't cooperate with them. Meaning we would do this all over again another day. So I went in there with him, and as soon as he saw the machine he started crying. They threatened, and so I did what any mommy would do--I went and got daddy. Long story short, we made it through. Toby calmed down and they actually let Nate lie on it with him. He went and got some x rays done after that, and we were done with the hard part.

So, the pressure with his VP shunt is messed up, and his ventricles are too small. They adjusted the pressure, and so far we've had no negative side effects. We will go back in three months to see if adjusting the pressure worked.

Nate was going back to work, and I was going to be at the hospital all day with three kids.

One of the incredible parts is that a girl in our youth group happened to be in the area on the same exact day as us and the same exact time. What are the chances except that God had His hand in that? So Nate went back to work, and I had help all day long. I honestly don't think I could have done it without her. Physically I don't know how I would have even made it, not to mention emotionally. I am so glad that God takes care of things. Even when we don't think we need His help. She was incredible. She rocked Milo, played with Toby and listened to Gracie's constant talking. I cannot even explain how thankful I am. God is so good.


Then we see our wonderful Orthopedic surgeon... (I'm being sarcastic.) He tells us that we should be happy with how Toby is walking (which is very, very little) and to plan on a wheelchair mainly. He said his knee is messed up, but not bad enough to fix, and then proceeded to list off every muscle Toby does not have. Sweet man. So here I am heartbroken. We've been working so hard on walking and standing. making him wear those stupid braces for what??!! It's horrible to think that you are forcing your child to do something he really physically cannot accomplish. Well, I get over it and just continue on. My friends on the Babycenter support group encouraged me to just let Toby do what he will do and not listen to doctors. (Great advice, by the way, if you guys are reading this.) So that was my plan.

Then, Toby decided to give me another great moment. A moment which gives me the courage to say, "Stupid doctors, we can do this, Toby. God can do this Toby."

This is Toby cooking pumpkin pancakes with me and Gracie.


This is my moment. Looking at this picture I am reminded of how much God has done, and how far He has brought us. A year ago if you told me that Toby would be standing on a chair (with his braces) and helping me cook I would not have believed you. But that's what he did. We took a risk. The risk of his falling or being scared and just set him up there and let him cook with us. What a great moment!! These are the moments that keep me going. That keep me from focusing on doctors who might not be the most sensitive. These moments help me scream, "YOU CAN DO IT!!"

So here I am writing this post about Friday night when already Today had another incredible moment.
Toby pulled himself up to stand today and stayed standing for the first time. His braces weren't locked, and he just stood there at the coffee table playing. Then he cruised over to the ottoman and even to the chair. He has never done anything like that before, especially not with his braces unlocked. So I stood there watching in amazement. (But tried to act like it was no big deal--Toby doesn't like to put on a show.) Inwardly I was cheering and jumping up and down; outwardly I walked around picking up toys.

Soooo....Dr. orthopedic surgeon man take that!! God and Toby will decide what Toby can do. Not you! : )

I'm thankful that God allowed me to see this firsthand so quickly after the appointment.

Wednesday, November 11, 2009

Tomorrow is well...tomorrow.

So today I found out that tomorrow is clinic day for Toby. About every 6 months we end up having a long day of appointments...tests, doctors, x rays and ct scans. The thing about these appointments is that the night before can easily put me into a panic.

I never know what tomorrow is going to hold. I don't know if tomorrow will be uneventful. If They will check everything and we will leave on the same road that we came on. Or if tomorrow will change the next days, weeks, months or even years. Walking into these appointments I always have in the back of my mind that they could find something on the CT Scan or see something else wrong. I never know when a new surgery will be scheduled or a new type of therapy will be added. The whole process of these days is overwhelming for me. I don't know if this will be the year that they have to sedate Toby for the tests, or if there will be a cute nurse that he will flirt shamelessly with. I guess that's the scary part. I just don't know anything going into them. Since they are so far apart there doesn't seem to be a general norm that I can get used to or that Toby can get used to. Don't get me wrong; I don't want them any closer together!!

Tonight I decide to tell Toby about going to the hospital in the morning. I thought that he was old enough to not be shocked tomorrow when he woke up and found himself on the way to see doctors and getting put into a CT machine. Maybe a bad decision on my part. He started crying and started saying that he wasn't sick. It's hard to explain to a three year old that they aren't sick but still need to see a doctor. Daddy of course was Daddy and distracted the destruction that Mommy created by promising to play a video game when he got home.

So for now, tomorrow is well...tomorrow...

I hope that tomorrow will be just a normal day of checking up or even a day of finding out good news. But there is always the chance that we will leave with a new mountain to climb over with Toby.

Please pray for Toby. Pray that he won't be scared. Pray that nothing will hurt.

Please pray for me. Pray that God will give me wisdom as I help Toby and try to teach him how to be brave but to rely on God for his strength.

Please pray for Milo. Pray that he will be good and patient through tomorrow.

Please pray for Gracie. Pray for Gracie's understanding through these appointments, pray for her patience, and pray for her to be the strong big sister.

Tuesday, November 10, 2009

Toby's Bike.....

This is Toby.






This is Toby's bike....Well the bike we want Toby to have.


Weve heard about these bikes for at least a year now and have really wanted to get him one. The problem is they are not the normal bike price...to say the least. We are working on raising money for this bike for Toby. It uses hands instead of feet to petal. It helps with balance and strength and honestly it just looks like fun.

One of the hard parts of Toby's life is just trying to keep up with the other kids. He does an incredible job when crawling, but since we are really trying to work past that he's been getting frustrated. I really believe this could help encourage him to keep working.

well, I got online looking for a used one...no luck. Then I found this website

www.adaptivemall.com

They have what they refer to as a Kiddiepool. You put in a request for a piece of equipment and people donate towards it. I am so excited about this. Nate and I have been working on a garage sale to help raise money towards this, but would really love any help.

If you know of any companies or individuals that would like to donate towards Toby's bike please let them know about us!!

The exact address for the donation is www.adaptivemall.com/tobyt.html

please be praying for this. I know it probably seems like such a little thing, but its super important to us.

Saturday, November 7, 2009

The Miracles

I've been wanting to write this for a while, but with three little kids keeping me busy it seemed like my time was cut very short. Poor Milo has a double ear infection, roseola and is teething on top of it all. Needless to say he didn't find it needful for me to have any extra time to sit down and write.

It's been a while since this story actually took place, but I thought it noteworthy enough to come back to.

There are aspects of our lives that are hard, and there are aspects of our lives that our wonderful, but then there are those aspects of our lives that are hard and yet so incredibly wonderful at the same time. Hope that makes sense!

My husband is the youth pastor at Leon Valley Baptist Church, so of course our children are regulars in Sunday School. (It always makes me smile when their attendance charts are completely full.) Well, for a while there they were studying different miracles that Jesus performed. If you are at all familiar with the Bible I am sure you are familiar with Jesus healing people who could not walk. For a couple of weeks Gracie would be bringing home pictures of a man on a stretcher and then walking. She would bring home papers with verses about how Jesus healed this man. I should have been putting two and two together. I should have known how Gracie's mind worked at this point, but I didn't. So here I was sitting in the van exhausted from a long Sunday morning waiting for Nate to finishing locking the doors, and this is what I heard.
"Toby, Jesus can make your legs better. Jesus can make you walk. We can pray. Jesus can do miracles." This said as she patted him on the shoulder as she was walking to the back of our minivan.
Of course my first thought was to hush her so she didn't confuse Toby. But then the second thought hit me. Her little heart had so much faith. It was not a question of if God would or if he could. It was a statement, HE CAN! Miracles might take place differently than they used to, but they still take place.
I look at the video that I just posted a couple days ago, and I think, wow, she was right. Jesus can make him walk. We can pray. And Jesus can do miracles.
I'm so thankful for Gracie and how she can show me what true faith looks like.

The sidenote of this whole story is that Toby sat there and said, "YEAH!!" very excitedly to her statements. Every statement was answered with a hearty, "yeah!" He might not have understood what Bible story she was referring to or how this would work, but he was totally with his sister on her plan.

So, this story came to my mind the other day as over the last week I have seen such a miracle take place in my son. I've seen God work.

I just want to write a list of the little miracles that have taken place this week, even if for my benefit only.

1. Toby asked to walk for the first time.
2. Toby asked to stay standing instead of sitting down when given the option.
3. Toby fell and didn't cry and asked to stand back up right after.
4. Toby walked through Chick-fil-A.
5. Toby stood on a stool and washed his hands.
6. Toby asked for his braces.
7. Toby became more confident.
8. Toby opened a door knob.


Thanks for letting me share this with all of you. I hope you enjoy reading this as much as I enjoyed writing it. I love sharing what God has done--especially when it is so clear that HE has done the work!

Friday, November 6, 2009

Our Story...Back to the Beginning III

This is just a continuation of two previous "Our Story" entries, so don't read this until you've read the earlier ones.

As we walked out of that small room into the open the nurses all stopped what they were doing and tried to give encouraging smiles and sympathetic looks. How little I knew that day how much I would come to hate those sympathetic looks. Dr. Greig walked us to the front and we made an appointment for the next week to ask questions and get some answers. We opened the door and walked into the waiting room where all the happy pregnant women and their husbands sat awaiting their appointment. I felt like I was branded with the word "defect" and somehow everyone knew and could tell. My heart ached like I have never felt before. A guilt that is indescribable came over me. Flashes of mistakes that I had made ran through my mind. Missing prenatal vitamins here and there, eating junk food, drinking coffee. I had no idea at that point how often I would feel that exact way and think those exact thoughts. We walked to the car in silence.
“What are we going to do?”
There was no answer to my question, but there didn’t need to be.
As my husband drove I looked over at him. The football player in high school, the athlete, the track runner, the basketball player. He wanted a boy to play with and to teach all of those boy things to, and now those dreams were gone. I ached for him more than for me. The loss of the dreams a father has for a son. I believed that his losses were far greater than mine.
I cried on the way home. I told him I was sorry, and I cried. He didn’t say much. He held my hand. My cell phone was ringing, but I didn’t answer it. How in the world was I going to tell our friends and family that were waiting for the, “Everything’s fine.” call? Because that’s exactly what everyone was waiting for. No one was expecting this. One of my friends kept calling. Nate finally answered and just told her that I would call her later on. For me one of the hardest parts was telling others.
I dreaded walking next door to my neighbor’s house, Debbie, to pick up our daughter Gracie. I went to the door and just asked for Gracie and left. I don’t think I said anything at all. Obviously Debbie figured out on her own the appointment didn’t go well. Larie, the one who went to Barnes and Noble with me, knew that something was wrong since I hadn’t called her yet. The night before we had planned on her and her husband Phil to take Gracie our daughter with them for a couple hours in the evening. She called to make sure that was still the plan. They came over that night to pick up Grace, and I know I told her the appointment didn’t go well. Those were the words I used a lot that day. It seemed like a good opening sentence to bad news so I just kept it. Through the evening, somehow phone calls were made and people started finding out. Nate called our pastor at the time, Dr. Gary Reimers.
I vaguely remember Nate saying that we didn’t need anything, just prayer. I can’t even tell you how much I prayed that day. I didn’t pray deep thoughtful prayers, just the same words over and over again.
“Lord, what are we going to do.”

Thursday, November 5, 2009

Toby Walking



Toby's therapist unlocked one of the drop locks on Toby's KAFOs last visit. Well, I wish I had a "before" video. But there is a HUGE difference. Keep praying for Toby.
This video was done with my phone, but I think it's still incredible!!!

Tuesday, November 3, 2009

Thank you

I just wanted to write this real quick because it was on my heart and I wanted to share.

I have been shocked to hear about so many of you who are reading this. There are people from our church, people from support groups, facebook, family and friends. There have been so many of you who have shared words of encouragment and understanding with me. Thank you. If it were not for the encouragment of others I don't believe I would take the time to continue sitting here to write. God has been so good to us and to me personally. Your words of encouragement have been such a huge help to me. I really wish I could explain it to you. Every time someone sends me a note or stops me at church to tell me that they read something, it means the world to me. (You all know who you are.) God is using you and your words to show me His grace daily.

Please keep on commenting, keep sending me notes, keep stopping me on the sidewalk. I am so thankful for each and every one of you.

If you'd like to receieve notifications for when I post something new, you can hit the follow button on the right of the screen. (You need a Google account.)

Thank you all so much for all the encouraging words you have been giving to me about this blog. (You know who you are.)

Monday, November 2, 2009

Our Story...Back to the Beginning II

This is just a continuation of the previous entry.....
so don't read this until you've read the first part of the story.

Nate was working at a car dealership at the time and he got off work to make sure he could go to my appointment with me. I had no idea that walking through those office doors would change my life forever. The nurses were incredibly kind and were talking happily and telling me all the things they were seeing. Then they became quiet. They were still friendly, but they kept looking at the spine and taking pictures. Then the big giveaway happened. They moved me and my husband to another room. They wanted to get better pictures of the baby on a 3-D ultrasound machine. I kept telling Nate that something was wrong.
“It’s taking too long.” I said.
He just patted my hand and told me to wait to see what the doctor said.
Then another giveaway. The doctor came in and kept patting my leg and asking me if I was okay lying down while they were doing more pictures. I said I was fine. I was too afraid to ask any questions, but I knew.
Then the next step. The doctor left and a nurse came in and directed us to an office. It was a small room with a large recliner in the corner, two chairs in the other corner, a doctor's stool and a small desk with a small television. The nurse directed me to the recliner, which I sat in until she left the room. As soon as she left I moved to one of the two small chairs in the corner next to Nate. It was just a couple minutes when Dr. Greig came in the door. He pulled up the stool right in front of us and said, “Well, it’s not good news.” That’s when everything came spilling out. I don’t even remember everything that was said. I remember things like, “wheelchair, kidney function, walk for a while, good quality of life, defect” I cried. It seemed almost fake to me. I remember thinking I shouldn’t be crying; I should be in shock. Shock should be coming first, not tears. So after one loud sob and the doctor patting my knee and telling me that it was okay to cry--I dried up. For some reason having Dr. Greig give me permission to cry made me want to stop. We didn’t get a lot of information that day. Dr. Greig didn’t want to overwhelm us. I remember thinking, "I need to keep a good testimony." So I heard myself saying, “God won’t give us more than we can handle.” Of course I said that before I knew all of the ins and outs of Spina Bifida. At that point I had no idea what our life was going to entail.

Sunday, November 1, 2009

Our Story...Back to the Beginning

I wrote this a couple years ago. I wanted to start keeping track of everything I felt and everything that went on during the beginning of our new normal. I know that some of the women reading this blog are pregnant with babies who will have spina bifida. I wanted to share my story, especially for you.

“Don’t worry. This is just a precaution. We are sending you to a specialist. I really don’t think anything is wrong.” All of these words were said to us by our sweet Doctor Price after my eighteen week sonogram. He explained to us that something looked funny about the baby’s head, but everything else looked great. The doctor only thought the baby’s head looked flat on one side because of the way he was positioned in the womb. For safety’s sake only, we were sent to a specialist in fetal monitoring. We had the sonogramist write on a piece of paper the sex of our baby and seal it in an envelope. We wanted to find out by ourselves. My husband was hoping for a boy, and secretly I was too. We got in the car and looked at the envelope.
“Maybe we should wait.” I said.
My husband wanted to open it. The words of my doctor kept going through my mind. “Don’t worry.” Nate said.
I couldn’t help it; I was worried. He used the term Spina Bifida. It was the first time I had ever heard those words. I had no idea what that even meant, but was too embarrassed to ask.
“Let’s open it.”
I was excited, and so I said okay. He opened it from the front seat.
“It’s a boy.” he said.
“No way. No way. You’re kidding.” I thought he was just being mean. I didn’t believe it 'til I saw the simple yellow sticky note, with “It’s a boy! Congratulations!” written on it. I cried. I jumped up and down on my seat and cried. On the way home I made the traditional phone calls to parents, family and friends. The only thing different was that I added, “There might be something that’s not quite right, but probably nothing.” We picked up our daughter from the babysitter, and that’s when I started really worrying. What in the world is Spina Bifida? I need to be prepared. I need to know before this specialist appointment so I don’t look like an idiot! So I called my Best Friend Larie who had just moved into town, and we went to Barnes and Noble and looked up special needs children and tried to find something on Spina Bifida. I found very little. I kept getting confused with other terms and mental retardation. I honestly thought it was the same thing as Downs Syndrome. So I left with my mind spinning even more than before and more worried than before.

Friday, October 30, 2009

Graci Lou

I was telling my friend the other day how excited I was about this blog that I'm doing. It has been so good for me and super encouraging to hear everyone's comments. Anyway, it hit me that she has an absolutely incredible Etsy store.

So I added a little button for her site on the right hand column and wanted everyone to know that if they purchase something from her etsy store to make sure they mention "raising toby" so that they can receive 10% off.

Her stuff really is beautiful.


Also, I was thinking about all you mom's out there with special needs kids. (Of course especially the ones with Spina Bifida) How perfect is this for our kids to know how incredibly strong they are?

A superhero cape!! Seriously, I love this! Especially with their name on it!


Anyway just wanted you to know. Thanks for checking her out.

When you get surprised

So, today we had our appointment with Toby's Orthotics guy. (I can never remember what they are really called) I wanted him to check on the work the guy in Florida did and make sure he thought Toby's heel was getting better.

So out I march with three kids. Gracie, (who has a weird rash on her face) Toby,(who isnt happy about getting his braces worked on) and Milo (on his last diaper)

Oh and dont forget, Me. (whose coffee pot messed up and hadnt had a cup of coffee yet)

We were certainly a fun bunch.

So we get there and everything is going well. Jim gives us the go ahead to start wearing the braces again and works on one little piece. Before we leave we put Toby's braces back on.

At this point it had been over two weeks since the last time Toby wore the braces. It showed. He just broke down on my lap. He cried and cried. Part of it was just plain bad and part of it truly broke my heart. Life is so much easier for him without those braces. He can crawl around playing and do almost anything he wants, besides walking. He looks at those braces as something that is holding him back, not something that is helping him. He's three and just doesn't understand that he cant crawl around forever. Those braces weigh him down and make it so much harder for him, but the also give him the ability to stand, to walk and to experience things he would never be able to without those braces.

It has struck me plenty of times that there can be things God places in our lives for our good, but we just view them as getting in our way. I know that Toby's braces will make him stronger, but he doesnt. I believe it's the same way with us and God. God knows that our trials will make us stronger even if we view them as hurting us or keeping us from the life we want. I know that God has used trials in my life to allow me to experience a relationship with Him that I dont believe I would have ever experienced if not for those hard moments.

So, I'm sitting there holding my crying son while Jim is trying to talk to me about what is going on. One of Toby's knees is messing up, (he used a more medically correct term) He let me know that if we don't get him up and walking that its just going to be harder and harder to ever get him to that point. At this point now I'm feeling pretty overwhelmed by this thought, which is being magnified by Toby crying and now Milo has gotten in on the action.

This is where the surprise part comes in.

Jim stops and looks at me. He stops talking about how we need to push Toby to do more and says, "I think I'm getting a glimpse of what you are up against here." (refering to Toby's crying about the braces) "I know this must be hard and that as a mom you just want to take them off."

There was nothing poetic or incredibly deep in those two sentences, but they made big tears start filling my eyes. As I felt the tears I really thought, WHOA where is this coming from, but then I realized. Jim did something that not many people do in the medical community.

He took the time to validate how hard this was for me as a mom. He took the time to let it be not just about all the medical junk, but about the emotion behind it all. The fact that he recognized that, helped so much. In my life we havent been around many who are willing to take that step.

So for today, even with the rough morning, I am thankful. Thankful for a couple sentences that God used to help me be prepared for the next few days of getting Toby used to wearing his braces again.

Wednesday, October 28, 2009

Holding Hands in a Wheelchair

As soon as I saw this picture I knew I wanted to put it on here.





Can you see it? Can you see them holding hands? This is Johnny and Toby. I love this picture so much because it's something Toby doesn't get to experience very often.
Holding hands with a friend seems like not a big deal, but to me it is.
Most friends don't consider holding Toby's hand because of the chair. Not in a mean way, it's just not something that is thought of.
I use to think that this was something important only to me, but honestly the more I think about it I think it's important to Toby also. I love watching him smile when someone reaches for his hand.


Of course Gracie had to get in on the fun!




I wanted to put these pictures up because it is such a small thing to overlook or view as unimportant. I believe that moments like these are some of the most important. They make your child feel loved, a part of everything and the same as any other kid. Don't overlook these little moments in life.

Seek out these moments. They really are the best!!



Milo didnt want to be left out of this post.

Saturday, October 24, 2009

The Fingerprint

Its funny to me how a small moment in your life can change it so completely.


The interesting part is that I cant even remember the day or month that it happened. But it happened and today I am a different person because of it.

It was a Sunday morning and I was sitting in Sunday School. Nate (my husband) was teaching the teenagers (he's the youth pastor at our church) and I was beginning to zone out. Sometimes it's really easy as a youth pastor's wife to think that the message doesn't apply to you because it's geared towards the teenagers. Not true.(and by the way I know that's horrible)

This particular morning Nate was talking about children with disabilities. This of course caught my attention a little bit.
I heard him read an incredibly familiar verse.

Psalm 139:13-14
For you formed my inward parts;
you knitted me together in my mother's womb
I praise you, for I am fearfully and wonderfully made
Wonderful are your works;
my soul knows it well.


Sometimes I think the problem with these verses is that they are so familiar that they can go in one ear and out the other. You can forget to sit there and really soak up the meaning.

Okay, lets step back about three years.

When I first found out about Toby's diagnosis I did not struggle as much with the usual, "Why God?" I struggled with guilt. I hate to even use the word guilt because it doesnt seem to really capture what I was feeling. When you think of the word guilt it's easy to picture a child doing something wrong and getting in trouble, and in turn feeling guilty about what they had done. This was so much more than that. I felt completely and utterly devastated by my guilt. Toby's diagnosis of Spina Bifida was my fault or so I thought. I was the only one responsible for taking care of him and carrying him for 9 months. I had failed. I never got truly angry with God I was too angry with myself. I struggled with guilt about every aspect of his disability. It was a sickness in my stomach that I could try and push away but would in the end overwhelm me. There was so much guilt that I couldnt even talk to anyone about it. It felt almost like a guilt I was trying so hard to hide, but in my hiding it I was actually sealing my guilt that much more.

For about three years I walked around with this guilt. It was always with me no matter where I was in my life. I'm not trying to be overdramatic, but I do want to get across how completely overwhelming it felt.

So jump ahead to the Sunday sitting in Sunday School class. Nate was discussing this verse with the teenagers. I had only read this verse in the King James Version and he was talking about the actual meaning of the words. He really focused in on the word, "knitted." This word really stuck out to me. Before Nate and I even got married Larie's now mother-in-law, Robin Buck was trying to teach me how to knit. I'm kind of a hard student to have so any time someone takes the time to teach me something I really appreciate it. I really enjoyed those lessons with her and while I was sitting there in Sunday School class I was picturing myself struggling with every little knit that I was trying to do. It took me FOREVER to get something big enough to be considered even a dish cloth. (kind of wishing I had kept it up) The reason that's important now is it started changing the way I viewed Toby. I am completely one of those people who learns through pictures or examples. Well, I'm picturing God knitting my son together for the first time. I've always pictured Toby's back as a horrible mistake, a defect as they call it in the medical community. Something that God wasnt responsible for, but something I was solely responsible for. That day in a teenagers' Sunday School class an incredible truth came into my heart. (It's incredible how God works) I looked at Toby as being knitted together completely the way God wanted him to be. Not a mistake that I had done to him. God knew every single part of Toby. What an incredible burden that was lifted off my heart that day. I don't understand why it took so long for me to come to understand that or why it was that particular Sunday School class that got my attention, but it did.

I want to put a little segment of Nate's book here because this was the other part in the Sunday School class that he went over that completely blew my mind.


"Did you realize that you are the work of the only true God? The One God who formed and created all heaven and earth and the same God who only has power to rule all creation is the same God who took the time and care to mold you as a potter molds the clay! This fact should make you jump out of your seat and praise God for your creation. You are the possession of the King of Kings and Lord of Lords. Perhaps some perspective will help you wrap your brain around your personal value. The price of a well-made quality guitar can range anywhere from $250.00 to $1,000.00. Now you take that same guitar and have a big name country music star sign the guitar all of a sudden, the value of that guitar skyrockets. The personal signature of an important person adds to the value of the object. You have the signature of God in your life. If the signature of a country music star can add to the value of a guitar, how much more would you say the signature of God adds to your value? You are priceless because God created your personally and left His fingerprint of expression."



If you know anything about Spina Bifida you know that Spina Bifida Mylomengicele is basically like a hole in the back where it didnt close at all. The damage done in the womb is there forever. Toby's spot on his back was not bubbled out at all but flat. He ended up having three different back surgeries to get it completely closed. The last one they had to really stretch the skin and he ended up with the shape of an oval towards the middle. I know it might seem a little cheesy but as I've said before I learn things by pictures. I look at that oval and really picture in my mind God putting His finger on Toby's back knowing exactly how He is knitting Toby together. Not only knowing, but making Toby even more important because Toby got the permanent signature of God on his life. Toby has God's fingerprint on his back.

That day God helped me to look at my son and myself in a different way. That day God wiped away my guilt and gave a peace that I am still holding on to.

I know that Toby's life is so important and that God is using His life to bring glory to Himself.

Thursday, October 22, 2009

Vacation Fun

We have had an awesome time this vacation. It's been crazy, but incredible. For part of the time we were able to go up to Greenville,SC to visit my parents, meet Nate's editors and see the college campus again.

My parents took us to the Japanese Steakhouse that was in town. Toby wasnt quite so sure about the fire, but after a while he eased up to the idea. Milo was never too sure about it.




Then of course the most fun thing was the free thing. My parents found some empty box lids and let them slide down their front yard. (I'm sure we looked very classy while we were doing it) The kids had a blast and thats what was important. I dont know why the things kids love the most are also embarrassing!



To me there is something incredible about seeing Toby play a game that doesnt have to be rethought or redone to make it possible for him to participate. I feel like a lot of our life is spent doing just that. This little game was perfect and just plain good for my heart because he played the same exact way Gracie did

Tuesday, October 20, 2009

Crying in IKEA

So, tonight I took my first ever trip to IKEA.

So, tonight I cried in the middle of IKEA.

Let me explain.

In my head a feel like I have a running list of things that make me sad in regards to our life with Toby. For example, I might see a child do something that Toby will not be able to do. Knowing that it will not be a part of Toby's life and knowing that there is nothing to do at the time about it I just tuck it away for another moment. There might be things that will make me sad but wont be things that I can do anything about until Toby is much older. So I just tuck that tidbit of information and put it away for maybe another time to be sad. (since it wouldnt be appropriate to cry in a store...say...like IKEA! :)
I truly believe this is a survival mechanism God has given me to help control those moments of sadness that seem to come at inopportune times. I'm sure some of you other mom's must know what I'm talking about. The moments at playgroups or walking around the mall or of course even walmart. You cant just stop grocery shopping and sit down and cry. So you just add it on to the list and it seems the list gets longer and longer.

Well, there are certainly plenty of things on my ongoing list that I do not think on daily. (I would be crazy now if I did) And sometimes I can even forget about them until they resurface.

So, picture this with me. I'm walking around IKEA with my friends and Toby, Milo, and Gracie just enjoying the atmosphere and trying to figure out things I can fit in my suitcase. (Im still in Florida) When I come across this


Doesn't seem like too big of deal, right? WRONG!! In the store they had it set up with a mattress on the ground where the hole is. So it was like a bunk bed but with the one bed on the ground. That's when it hits me. I get to do something that I don't get to do very often.

I scratched something off my list.

You see one of the things that had made me sad when I realized I was having another boy was the fact that I couldn't picture them in bunk beds. I always pictured brothers in bunkbeds.. I know it's a little wierd, but just one of those things. Well, the problem was that I couldn't wrap my mind around how Toby was going to be able to have a bunkbed with Milo without having to make it look weird with steps and all kinds of things added to it.(I really like things to look as normal as possible) So when I saw the bed at IKEA I realized that here was an answer. I know longer needed to feel like this couldn't be a part of their lives when they got older. It very well could be and it could still look nice. I pictured the boys just sitting there on the beds hanging out just like any other brothers. So that's when the tears started. In my mind I took that thing off my list and something incredible happened in IKEA.

My list got shorter

Thursday, October 15, 2009

P.K. Hallinan

ONE of the many things I wish society would do differently in regards to handicapped children is adding pictures of them more frequently in books and on television. I'm not talking about a sweet little book about the little boy in the wheelchair and how he uses it. I'm just talking about having the little boy in the wheelchair be some part of the story, maybe even the hero of the story, without having to mention his wheelchair. I think there is a downsize to stories about wheelchairs for children because it draws attention to the chair instead of to the child that's in that chair. I know there are plenty on their who know someone who is just an incredible person who just so happens to be in a wheelchair.

One of the author's that I believe does a good job of this is P.K. Hallinan. 'When I grow up' is just one example. His stories just have a little boy in a wheelchair scattered throughout the book, without mentioning the wheelchair itself. Now I will have to say that not ALL of his books do this, but there are quite a few.


Now before you mom's who might not have a child in a wheelchair dismiss this post as not pertaining to you. WAIT
How much better for your child to see on a casually basis pictures of children in wheelchairs? How much more prepared would your child be when seeing a child in a wheelchair? Yes, it seems like a small insignificant thing, but I think it's big. I think it's really big. I want my son to go into McDonald's just like any other boy without children staring and whispering. (yes, granted that is incredible normal) but don't you believe that it would be a lot less striking of a sight if your child had books or shows that had children in wheelchairs on a regular basis. So here's what I'm asking of everyone reading this: (Whether you be a grandma, aunt, cousin, friend, or sunday school teacher) could you find a book for whatever children are in your life with pictures of a child in a wheelchair? Maybe we can really start someting. Not just for Toby but for all those children who truly want to be seen for you they are and not for what they are sitting in!

P.K. Hallinan is the only author I have found so far that does this. If you know of any other's please let me know!!

Wednesday, October 14, 2009

Normal to Crazy in 2.5 Seconds: KAFO's

I'm sure any mom can undertand this.

You think your day is going well. There might be one small issue going on but nothing big. You're sitting around and decide to call up the ______________ (fill in the blank: doctor, therapist, orthopedic specialist) to mention what you seem to think is a small issue.
That's when everything changes. Your small issue turns into something much more serious then what you thought. You go from the mom who has it all together, to the mom who doesn't have a clue what's going on.
Not what I would consider a fun time.
As I've said before we are on vacation right now. It has been pretty uneventful concerning Toby. Especially for being at such a new point in his life with really pushing for walking and other things.
About four days ago Nate and I noticed a small red circle on the back of one of heels from his KAFO'S (leg braces). I thought, no big deal, leave them off for a day or two and it will be better and we will put the braces back on. The problem being three days later the red mark was still there.
Well, Im still in the 'no big deal' stage. Yesturday, I decided to put in a couple calls back to Texas to find out what we needed to do.
Within what seemed to be a couple seconds I found out that it was indeed a more complex problem. We needed to start putting heat on it, massaging it and work on finding an orthotics guy down in Tampa.
There is something about trying to find someone who is willing to work on something as imortant as a KAFO while out of town and trying to work out insurance and all that. Well, as I sat there stressing out and worrying, God was working everything out. God knew that this would happen and would also know how the outcome would be. I called the Spina Bifida clinic in Florida yesturday and really thinking I wouldnt here back from them. At 8am this morning they called back,(which is an incredible time frame) by 9am I had found an orthotics guy that would see Toby any time TODAY! By 2pm Toby had his braces fixed by a wonderful man and we left the orthotics office without ANY bill whatsoever. He worked on his braces completely for FREE!

Can there by any other reason of this afternoon going so well other than God working? NO WAY! I am so incredible thankful that God knows everything we will face before it happens and not only does He know, He takes care of it.

There were hard parts of the day for sure like when Toby started crying as soon as the man walked in because he had a white coat on. Or when I didn't have my cell phone on me to get the number for our office in Tampa. There will always be those hard parts of any of these types of situations. But I know that I can either sit here and think on how sad I was when Toby cried or how stressed I felt about not having my phone...OR I can focus on the incredible grace of God and how He completely and utterly took care of this for me.

Thursday, October 8, 2009

The Incredible People

Today we returned to Greenville, South Carolina for the first time since Toby was 2 months old.
Greenville holds some incredible memories for us. It was where we went to college, where we had our first apartment, first home, first child Gracie was born and where we found out about Toby's diagnosis, gave birth to Toby and spent four long weeks in the hospital with him after birth. This is where people rallied around us, prayed for us and supported us. This will always be considered my home to some degree.

I am reminded of all the incredible people we had in our lives while we were here, some that we still keep in contact with and some that we will most likely never see again. God used so many people in our lives through those months I could not imagine mentioning them all, but I do want to mention a few. I believe that looking back at times like this can truly help us see the goodness of God.

There was Dr. Greig who was the one who first broke the news of Toby's Spina Bifida. He was the "worst case scenerio Dr." The one who pats you on the leg while he tells you how bad it's going to get. He's also the one who lets you cry. He's the Doctor with the big box of tissues in his office. Dr. Greig acted like he had all day long to sit there with us while we cried and tried to soak up all this information. I never felt guilty for cying in his office.

Then there was Jean Brown. She was the head nurse of the Spina Bifida Clinic. She was the one with all the information. She gave you the facts and only the facts. She told you the worst case and the best and then let you know the chances would be you would be right in the middle. She didn't have time for your tears. (not in a bad way) She was there to equip you. To make you into the fighter that you needed to be for your child. She'd let you know everything you needed to know, but not one sentence more. She made me realize that I could take care of Toby and if I had any doubts, well, I just didn't have a choice. There were days when I needed that more than anything else.

Then there was The Blakes. They were the family that didn't beat around the bush. They didn't tiptoe around you at church because they were afraid to upset you. They asked the hard questions and sat their and listened while you gave them all the answers. They were the people that you got to rehearse everything to that the Doctor's had told you. It sunk in a little more to say it aloud. Then they would hug you like there was no tomorrow and pump you full of incredible food before you left their home. They were the listeners. Days when that was all I needed someone to listen.

Then there was Debbie Jones. She was the practical one. The one who gets no glory. Not the one who is holding your hand at church or sitting at the hospital with you. She's the one that sits at home watching your other child and making sure you don't worry about making it to any appointments. I don't know what we would have done with out Debbie. She never once asked for anything in return. She was just always there and always willing. After we got the diagnosis for Toby we went over to her house to pick up Gracie and she never asked a question. She just did her part and kept being willing to do more.

Then there was Larie and Phil. The friends that are once in a lifetime friends. Larie was the everything person. The shoulder to cry on, the practical one, the listener and the fighter. She matched whatever I needed on any and every day. When I was ready to fight, she put on her boxing gloves, when I was ready to cry and not go on, she was crying with me, when I needed someone to take Gracie or go with me an appointment, she was riding in the car or taking Gracie to McDonald's. When I needed to talk everything out, she listened without offering advice. I know that Phil sacraficed a lot of time with his wife through those months. I know he was there to let Larie cry when Larie was got home from crying with me. He was the supporter Larie needed so that she could be the supporter that I needed. I am so thankful that God moved them to Greenville when He did.

Looking back there was so much I needed through that time in my life and it is incredible to look back and see that God filled each and everyone of those needs. It gives me the hope to know that God is going to continue to fill those needs through the coming days, months and years.

I know that if you have a child with special needs there is a list of people you could think of. Maybe you can sit there and list them all out, but my challenge today is to look back and thank the Lord for providing those people for you and maybe even call them up and thank them. Chances are a lot of them had no idea!!

Monday, October 5, 2009

A trip with baggage

Going on vacation is something that we always look forward to. We leave tomorrow with Nate, Gracie, Toby and Milo all together. Nate will come back home after a week to go back to work and Gracie, Toby, Milo and I will stay in Florida for another two weeks for my friend Mesha's wedding.
I'm excited about so many parts of this trip. The first week we are driving up to Greenville to do a book signing for my husband and we will be seeing the city that Toby and Gracie were born in. Greenville will bring back so many memories for me. Good ones and bad. So for the next few posts I'll probably be talking some of those memories.
There are parts of this trip that I know will be hard also. Hard for me as a mom and also hard for us as a family.
The hardest part for me is comparing. My best friend Larie lived in Greenville and was pregnant at the same time I was in Greenville and pregnant with Toby. We both ended up with little boys within 2 months of each other. The last time I saw her and Johnny together was two years ago at Susie's wedding. The boys were one and I remember being so thankful that Johnny wasn't an early walker. I guess what didnt come into my mind at that time of thankfulness was the fact that HE WOULD indeed be a walker. That there would come a day when we would take this trip (again for a wedding) and there would be Johnny walking and Toby not. I know that it will be hard to not compare. I know everyone mom has a problem with comparing their family situation or their kids with others. I want to enjoy this trip and not spend the time wishing for Johnny's legs on Toby's body. I don't want to be over dramatic and for you to picture me sitting in the corner in the fetal position crying and unable to enjoy myself. Trust me I will enjoy myself. This is my home and these are the people who understand more than anyone in the world. But there will be those times when the hurt will almost knock you over and the problem is that it can come on so suddenly. I know there are so many who understand this sudden pain I am talking about. It's the kind you cant just sit there and explain or cry because it's usually when no one is aware of it. I know Larie understands because of her desire for another child and her multiple miscarriages, I know Jamie understands because of her little girl's cancer and I know there are plenty more I am not mentioning. This pain usually happens when you aren't planning on it or thinking about it or discussing it. It just happens.
I remember leaving a park after what I thought would be a perfectly normal playdate. I knew Toby couldn't walk, I knew he wouldn't be able to play on the playground, but yet there I was leaving the playground crying my eyes out because all of a sudden the pain seemed unbearable at the moment. I think that's one of the hard things about the day to day life. You never know when the pain is going to hit and knock the air right out of you.

When Toby was in the NICU a mom whose son was grown, but who had Spina Bifida had come to talk to me. She told me, "You will cry." I thought she meant that I would cry during hospital stays, during therapy visits or doctor's appointments. I didnt understand then that she meant, You will cry and cry and cry and cry and not plan on crying but cry again. That you will cry after playgroups, you will cry after vacations and you will cry at any given moment when a new thought hits you or maybe the same old thought over and over again.

I think the only thing that I have come to realize this trip is that it's okay. It's okay to cry and it's okay to let people know I'm crying. It does not mean that I wish for another child. It does not mean that I love Toby less. It does not even mean that I would change things if I could. It doesn't even mean that I don't love Johnny or want to be around him.

This life with Toby, Gracie and Milo is certainly a journey. I know that this trip there will be trials, there will be heartache, but there will also be (and more importantly be) happiness, triumphs and of course a wedding!!

So instead of dreading this trip, like maybe I would have done. I go, with yes some fear, but with the realization that God is going to give me the grace to handle those sad moments and the tears that go along with them. I thank God so much that I can have a personal relationship with Him.

Friday, October 2, 2009

Try something new



Let me challenge all you parents who have a child with special needs to do something in the next few days. Look for something your child cant experience that a "normal" child would be able too. I know it seems heartless, but find something that you might not realize your child isnt able to do. Then fix it. Even if just for a few moments make it where your child can experience it. Get creative and work around the disability. As you can probably tell from the picture I realized that my son Toby never got to look out windows like the rest of the children his age get to do. So we fixed it and I set him up with his braces to do just that. He loved it and it was one of those little triumphs in our lives to watch him experience something new. If we dont look for opportunities like that those opportunities will be lost. Even things that might not seem to matter. Like turning around and watching the toliet flush or watching a roll of toliet paper unwind. (I dont know why I have the bathroom on my mind) Maybe it's just sitting on a skate board or sitting on the countertop helping cook. I think it's easy to over look these things because we try to focus on what our child can do not on what our child cant do, but then we miss out on the opportunites to help them do something that they can do with a little creativity. I will look at this picture and always remember the day that he stood and looked out the window for the first time. I'd love to hear of any thing that you came up with for your child.

Spina Bifida Awareness Month

October is Spina Bifida Awareness Month.
My son Toby has Spina Bifida, myelomeningocele L3 - L4. Toby is three years old, uses a wheelchair, crawls around the house, and is beginning to use a walker with the help of leg braces.

This article was taken from Kidshealth.com Sometimes the easiest way to understand things like this is when it's written to children. I think adults get too caught up in using big medical terms.

What Is Spina Bifida?
Someone born with spina bifida has an opening in the spine. A healthy spine is closed to protect the spinal cord, a bundle of nerves that sends messages back and forth between your brain and the rest of your body. The messages tell your muscles to move so you can kick a soccer ball or pick up a pencil. The messages also tell you about sensations on your skin, so you know to pull your hand away from a hot pot.

When a baby is growing inside its mother, the spine and spinal cord are developing. But sometimes part of the spinal cord and spine don't grow the way they should, leaving an opening where the spinal cord may protrude outside the body. When this happens, a baby is born with spina bifida, a term that means "split or open spine."

Because of the opening in the spine, the nerves of the spinal cord may be damaged. A spinal cord that's damaged may not be able to do the important job of getting messages to and from the brain. Usually when your brain says "kick the ball," the nerves of your spinal cord carry that message that tells your leg to kick.

These messages may not be able to get through if a person has spina bifida. The person may not be able to move their muscles the way other people do. This is called paralysis (say: puh-ra-luh-sis), which means a person can't move some muscles or to feel things on some parts of the body.

Wednesday, September 30, 2009

Noah

Today I was reading about Noah. I have heard this story again and again. I have even told this story again and again, but today it struck a chord.
Today was a lonely day when it comes to coping with Toby's care. Today felt like one of those "in the boat by myself kind of days." Today was one of those days when I wanted to sit on top of my house and scream out a long list of things I deal with day in and day out. I wasnt wanting to scream in the angry sort of way, but in the please can someone understand this. I am not just talking about the trials and the hard times, but even the triumphs, sometimes especially the triumphs. There are aspects of Toby's care that I don't share with others because Toby will not always be three and I want him to one day choose what he wants to share with people. Even in writing this blog there will be parts of Toby's life that will be a closed book, parts of his life that will be left for him alone. There are those days that making the choice to not share it all can seem incredibly lonely. Not because people don't want to care or might not know what to say, but because people can not know what to say or how to care because they truly do not understand.
Well, back to Noah. I was struck today but the fact that the task God gave him must have been at times a lonely one. In 100 years he did not have one person say "hey, I understand what youre going through. I know youve got to be tired of building and working." He did not have one convert in those 100 years, but he kept going. He kept at the task. I would imagine in those 100 years he wanted to stand on his rooftop and scream at everyone that it wasnt the easiest job in the world to be building an ark and to have no one not just not understand but to not even believe you. Wow! Now that's lonely. Im sure he would have been happy to have someone come along side him and just understand his job. When I say, 'understand' I dont mean a pat on the back, I mean truly just understand how hard the task is sometimes. Or even understand when he got a lot accomplished and had a wonderful day. I know if I had been Noah I would have wanted to give up in the first year, not to mention the 50th or the 99th. I think sometimes we over look the incredible faith and stamina Noah must have had because we are so focused on what happened after he built the ark.
I was encouraged by Noah continuing on for a hundred years doing the task that God had set before him. It's a simple as that. Noah didnt need recognition and someone to understand his frustrations, trials or even the triumphs of his day to day life of building the ark. He needed the grace of God and the power of God.
I am praying today that I will be like Noah. I pray that people will not look at my life and say, Wow, look how great Kari's doing, but will instead say, look how powerful God is in Kari's life.
2 Corinthians 4:7

Tuesday, September 29, 2009

Bring the Rain

I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray

Holy, holy, holy
Is the Lord God Almighty

Mercy Me

Monday, September 28, 2009

Hospital Gowns

The first month of Toby's life was spent in the NICU of Greenville Memorial hospital. It was one of the scariest months of my life. We dealt with multiple surgeries and times when we thought we would get to go home only to be dissapointed again. It was also a very lonely time in my life. There were plenty of times I would drive to the hospital to nurse Toby only to be told that he had just been fed a bottle. Those moments were lonely and frustrating.
Moving to texas one month after getting out of the NICU we ended up with multiple trips to the pediatric ER at Christus Santa Rosa. Every time I would sit in those tiny ER rooms looking at my little baby boy with the ugliest purple hospital gown barely hanging on him. It was miserable.
When I picture kids in the hosptial it's hard for me not to picture my miserable little baby boy in a purple hospital gown with obnoxious teddy bears all over it.
Recently, Jamie (one of the women who truly helped me through all those ER visits with Toby)found out that her little baby Charli (6 months old) had a cancerous brain tumor. This beautiful little girl will undergo numerous trips to the hospital during which she will endure six months of chemo. Jamie is one those mom's whose children seem to always look perfect. When my children are going around with stained up shirts and clothes that don't match she had her children looking adorable in matching shirts and cute khaki shorts. Charli has been the same in the first 6 months of her life. The cutest clothes you could possibly imagine with a matching little ribbon stuck on her head! Not overboard like some mom's, but just always looking cute and put together. Well, all I could picture was Charli in an ugly hospital gown just like Toby. So that's when my ideas stared coming. She needed somthing cute, something pretty she could wear during her days of chemo, but also something practical. So I did what I do. I started sewing. I made her two cute little hospital gowns. One bright green and happy and one khaki with little flowers on it. I sent them off today and hope that they work out well.
Then I started thinking even more. How much I would have loved to take a cute hospital gown with me for Toby in the first few months. Then the wheels really started turning. Was there a way to get hospital gowns out to families who could really use the encouragement? Was there a way to include the gospel with these little packages? I dont know how to start something like this, but man would I love to. I know that in those lonely moments sitting next to Toby it would have been an ongoing reminder that someone was caring and wanting to help in some small way.

That's what I want to do. Help in some small way.

If any of you that read this have any ideas or suggestions. I'd love to hear them.

Saturday, September 26, 2009

The things we say

The weird things I say on a regular basis
If you don’t wheel yourself over here right now im gonna….

Don’t you stomp your hands at me…..

You take those brakes off right now young man

Watch out for their feet

Don’t run over your sister

Watch where your legs are

Big pushes, not little pushes

Don't run over your friend


The incredible things I get to say on a regular basis
You can do it

You’re so strong

Just two more steps

Keep on going, almost there

I’m so proud of you

You did awesome

I know you’re tired, but you can do it

Mommy’s right here

I’ll help you if you need it, but you don’t need it

I promise to catch you

Look, I’m right behind you

Look how fast you’re going

You did it, baby!!

Friday, September 25, 2009

From a Friend

I have a child with special needs?

When my friend, Kari, asked me to write something for her blog, which was created to be a ministry for moms of children with special needs, I really had to pray about what to write because I do not really see my three year old Matthew as disabled.

Yes, he has been diagnosed with spastic diplegia cerebral palsy, wears braces all day, walks with a reverse Kaye walker, receives occupational, speech, and physical therapy twice a week, and gets botox injections every three months in his legs. He has seen more specialists than this article will allow space. He spent two months in the NICU before he could come home, and has had surgery (achilles tendon lengthening) on his legs. He still needs his wheelchair for any long distances like trips to the zoo and we have a handicap placard for the van. So, to the naked eye, at first glance, yes, we have a disabled son.

But look just a little longer, and you will see his smile. And then you will hear his laugh.

And that image of the disabled child melts away. At least it does for me, because when I hear him laughing five minutes after receiving painful botox injections, or playing tag with his six year old sister while in heavy casts after surgery, which he had to wear for a month, I am reminded that I am blessed to have a DAILY encounter with God's grace and love.

Matthew struggles with feeding himself with a spoon/fork. It is not easy for him to get into a chair by himself. By the time he sits down at the table with the other kids, they are ready to get up and move on to the next thing. When the kids are playing tag, Matthew can participate but may bump the other kids with his walker. Some kids understand, and others do not want to play anymore. Through all of these things, he has a remarkable spirit. When he prays at night, he thanks God for his walker and his wheelchair. He just keeps going....and so will I...

But Jesus beheld them, and said unto them, With men this is impossible; but with God all things are possible. Matthew 19:26

Faith is to believe what you do not yet see, the reward for this faith is to see what you believe. Saint Augustine


By: Monica

Thursday, September 24, 2009

Tuesday, September 22, 2009

Celebrity Status

When the world first hears of your child's special needs you reach a new status in today's society. I have found that especially in today's churches you reach what my husband and I like to refer to as celebrity status. Everyone wants to talk to you, hug you, pray with you and for you. Your fridge is bursting at the seams with meals and you cant walk two steps in the church sanctuary without getting at least a half dozen hugs. Now don't get me wrong. I believe strongly that God shows us immeasurable grace through those moments. He gives us strength by allowing there to be no doubt of His love and our church familiy's love surronding us. You can conquer anything in those moments, during those constant reminders of support, love and encouragement.

Then it happens. Your status changes. You are no longer the celebrity.

The dust settles and people move on with their lives.


However...
God is still good. God is still soverign. God's grace is still sufficeint.

The thing I have recently come to realize is that it is not because people do not care. Your status may change. There may be more pressing prayer requests on people's hearts, but I believe the responsiblity lies with the parent of the child with special needs. Assuming no one thought of my day to day struggles I stopped talking about them. Assuming that no one wanted to know about the last time I cried or wanted to give up I stopped sharing those moments. It wasnt until I finally had enough nerve to tell my best friend that I had felt forgotten that the light was shed on what had truly happened.

I had stopped talking. I had stopped sharing. I had closed the windows, drawn the shades and nailed the blinds down.

I was missing out on the hugs, on the prayers and on the gentle questions of how I was doing because I had stopped talking. I was missing out on the grace that God intended me to have THROUGH my life as I raise Toby. I assumed when Toby was a baby and we weere past the monthly ER visits and ICU stays that the hard part was over.I believed that now I was at the part that I was going to handle on my own.

Looking back I understand that the dramatic moments, such as rushing to the hospital, isnt the hardest part of a child with special needs. The hardest part is the day to day living. The moments you don't want to drag the wheelchair out of the car one more time or strap on a brace to a little boy asking you to stop. I also understand now that God did not intend to just a help me through the first few months of Toby's life He intended to see me through to the very end.

God is still good. God is still soverign. God's grace is still suffiecient.

Even in those daily moments, if not especially in those moments. God's grace does not leave us after the hospital stays and hard therapy sessions. God's grace might be more evident in those moments, but He doesn't change.

We might not be celebrities any more. We might assume that no one is asking because no one is caring. But maybe, just maybe we've stopped talking, stopped sharing and nailed those blinds shut. Let me challenge you with being willing to open yourself up and share those moments of heartache and trials. Give your family and friends a chance to hug you, pray with you and even fill your fridge if need be.

The Reason

We all have our stories. We all have our trials. This is not just about Toby. It's not about braces, wheelchairs, therapy and doctor's visits. This is about bringing God glory in our everyday life and in our children's lives. Yes, our lives can be filled with pain but also with a hope that other parents will never experience. Praise God for the hope in the midst of the pain. I started this blog after talking to a couple of friends about the honesty we need in our Christian lives, especially in regards to trials. We want our pain to be private. I especially would much rather "fake it" than to open the shades on the windows of my heart. Well, with this blog I hope to not only open the shades, but open the windows and the doors of my hear--all with the goal of sharing God's grace.

Psalm 73:26
My flesh and my heart faileth but God is the strength of my heart and my portion forever.