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.