October 4th -- Spina Bifida Awareness Month

The next step in our journey with Toby began on the evening of January 14th.  While I was nursing that day, I began to notice that something wasn't right.  I suspected he may have reflux.  He had projectile vomited a few times, and a lot more milk was coming out than going in.  I wasn't panicking just yet because I had a similar issue with Garrett.  I had so much milk that he couldn't eat on both sides or he would vomit it all back up; his tummy was too full.  I tried to slow things down with Toby too, and then that evening I called my friend Sonya.   She's a dear friend from college, a nurse, and one of her boys had reflux, I knew she would give me good advice.  The biggest fear in the back of my mind was shunt failure because a major symptom of that is projectile vomiting.  That night things got worse, and Toby started to make this awful sound when he was breathing called stridor.  In the middle of the night milk was coming out of his nose.  by the next morning his breathing was really fast.

When we had left the hospital eleven days prior to this, our case worker handed me a huge binder with different doctors' names and phone numbers. It contained a variety of different information related to Spina Bifida: orthopedics, physical medicine, urology, developmental pediatrician, and neurosurgery.  I felt overwhelmed that morning because I had no idea which doctor's office to call.  What area did this fall under?I called a friend who is a pediatric nurse practitioner, and she had me do a respiration count, and then said, "he needs to go to the ER."  I don't know why I didn't think of that.  She came over to stay with the boys, while Bruce and I headed to the ER.

We were admitted later that day to the Infectious Disease floor because the ER doctors suspected RSV.  I knew they were wrong, but I didn't speak up; no one in our house was sick, even with a cold.  In the back of my mind I kept going back to what I had read - that this was a symptom of his Chiari II Malformation. Chiari II is named after a man named Arnold Chiari.  During brain development when a baby has hydrocephalus, certain pieces and parts of the brain - specifically the cerebellum end up being a different shape, size, and cause it to be displaced into the brain stem.  Your brain stem is where the vagus nerve is located, which controls breathing, swallowing, etc.

Within a few days, Toby failed a swallow study - he was aspirating his food into his lungs, so they put in a nasal gastrointestinal feeding tube placed (through his nose), and once again I was back to pumping.  His oxygen was low, so he was hooked up to oxygen through a nasal cannula. They also ruled out any shunt issues at this point, but he cried often.  It was just awful - I can remember being so frustrated that I couldn't feed him.  One night he was just miserable, and I was there holding him in a rocking chair with my back to the door, he just wanted to nurse.  I was so angry, and I can remember a PCA (Patient Care Assistant) opening up the door to ask, "Mom, are you feeding him.?"  My reply was, "No, but I want to."  What was so frustrating is that I hadn't been there for the swallow study.  It wasn't supposed to be for a few more days; I had gone home to get rest, and then they had a cancellation.  Just the day before, an occupational therapist had evaluated me nursing him to see if the swallowing was positional; her conclusion was he could continue nursing.

Then, ENT came up and put a camera through his nose to look at his upper airway.  His vocal cords were paralyzed, and neurosurgery ordered an MRI to see if he would need a Chiari decompression.

On Thursday, he had an MRI.  They didn't get any decent pictures because he was retracting too much when he was breathing.  I can remember carrying him back up to the floor from radiology, and he was completely limp in my arms.  The PCA came in to do vitals and his blood pressure was 140/80; temperature in the low 96's.  "Something is really wrong," I told her, "I'm really worried."  Toby had been a very strong newborn; we would have to lay him on his side to change his diaper because of the open hole in his back, and he would roll over on me.  He was that strong!  Now, he was limp - I just remember his arms/legs hanging down past my arms.  One of the residents called an ICU doctor to come up.  She is an older cardiac doctor that has been there forever - Dr. Kraenen.  She took one look at him and said, "Get him in the PICU right now!"

Then, it was the "Running of the Bulls" (as my friend Allison calls it).  Blood tests were being ordered, people were rushing in, and I was falling apart.  Dr. Kraenen gave me a side hug and said, "It's going to be okay, he's going to be okay."  The major reason for his limp unresponsiveness and crazy vitals was his sodium had dropped to 108.  They put him on an IV drip of saline, scheduled for a PICC line for antibiotics, and then an EEG to make sure he wasn't having seizures.  Normal sodium levels are between 135-145...anything below that and you run the risk of seizures.

The mask was just awful; it never stayed on right.  It was also really strange because one eye was always cracked open a bit; it sort of creeped me out.

Once he was in the ICU hooked up to the sensitive monitors, we started to see the apnea episodes.  When you look at this screen below you can see:
HR (in green) - 112
BP (in purple) - 75/32
Temperature (in purple/Celsius) - 35.6
Respirations (in white) - 8
Oxygen (in blue) - 100

We would have to rub his arm to get him to keep breathing.  The doctors would then try to wean him off of CPAP, and he would code - turn blue, oxygen and heart rate dropping.  That happened so many times I lost count.

By this time, his sodium was staying level.  He finally was maintaining his own body temperature (prior to this he needed warming lights, etc.), and his thyroid tests came back normal.  They were trying to figure out why his sodium dropped.  They also wanted another MRI to see if he had any damage to his brain from the low sodium.

As I was driving back and forth from home to the hospital I was listening to a CD by Stephen Curtis Chapman.  The song called "Believe Me Now" really spoke to my heart during this time:

I watch you looking out across the raging water
So sure your only hope lies on the other side

You hear the enemy that's closing in around you
And I know that you don't have the strength to fightBut do you have the faith to stand

And believe me now, believe me here
Remember all the times I've told you loud and clearI am with you and I am for you

So believe me now, believe me now

I am the one who waved my hand and split the ocean
I am the one who spoke the words and raised the dead
I've loved you long before I set the world in motionI know all the fears you're feeling now

But do you remember who I am?

Will you believe me now, believe me here
Remember all the times I've told you loud and clear
I am with you and I am for you

So believe me now, believe it's true
I never have, I never will abandon you
And the God that I have always been
I will forever be, so believe me now

I am the God who never wastes a single hurt that you endure
My words are true and all my promises are sure

So believe me now, oh believe me now

So believe me now, believe me hereRemember all the times I've told you loud and clear

I am with you and I am for you

So believe me now, believe it's true
I never have I never will abandon you
And the God that I have always been
I will forever be, so believe me now
Believe me now, believe me now

God was asking me to trust Him.  He was telling me that He was with us, that He would always be God no matter what happened with Toby.  He promised that He wouldn't waste this hurt we were going through; that I needed to believe.  I have clung to this song over and over through the years.  Even now, listening to it my eyes fill with tears.  One day at a time; He taught me to take things one day at a time.  He holds the future, and He can return to the earth at any moment to take us to heaven...then all that worry would have been for nothing.  I needed to trust Him one moment at a time because HE IS TRUSTWORTHY.  

  

October 3rd - Tough Questions

Tomorrow I will continue with Toby's birth/beginning of life story, but this morning I want to take a moment to share a conversation Toby and I had last night.

Toby and I were hanging out at the park during Garrett's soccer practice.  He and I began to talk about his back surgery today.  For some time, he has had the misconception that every time he has surgery it's going to fix things so he can walk.  For the first time I had the courage to tell him the whole truth and not just a brief answer and move on, "No buddy, you can't have a surgery to help you walk.  You're probably never going to walk."

I wanted to cry buckets of tears at that moment. Ugh! Why is this so difficult?

Toby's response was, "This is dumb, that's ridiculous."  He pounded his chair and then did his "self-talk" thing where he tells himself it's going to be okay. He told me he wants to run and play like other kids - he pointed at the kids on the playground. "I want to play football."

What do you say after that?  How do you make it sound less awful? How do you explain that your situation really stinks, but God has an amazing purpose in all of this?

I've been reading a lot lately about how people with Spina Bifida don't want recognition and accolades for overcoming their disability. They just want to be treated like real people. While I agree in part with what they are saying it doesn't discount the fact that Toby has faced more hardship in the first 7 1/2 years of his life than most people face in a lifetime.  It doesn't change the fact that he is going to have to overcome many obstacles and already has - one of which is just being alive. I don't want to discount his courage and perseverance.

So, how did I respond?

"Buddy, I know it's hard; I'm so sorry you can't walk and will not be able to, but I know that God has a purpose and plan for your life.  There are verses in John 9:1-3 that say:
"As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he would be born blind?" Jesus answered, "It was neither that this man sinned, nor his parents, but it was so that the works of God might be displayed in him."

Toby interjected, "I know those verses."

I know you do, buddy, they are some of mommy's favorites.  Do you know what being blind is, Toby? It's when someone isn't able to see anything - only darkness. This man was born that way, just like you were born with Spina Bifida.  Jesus told his disciples that this man was born that way so God's works could be shown through him.  God wants to use you to show His glory so His works can be displayed in you.  Every time you choose joy instead of anger because you can't walk, you do that. Every time you are thankful for all you have and are - you do that.  Then, we talked about the many things that he can be thankful for - he can play sled hockey, baseball, use his hands to write, and talk. So many kids don't even have that."

It was one of the toughest conversations I've had. How do you explain to a 7-year old that we live on a sin-cursed earth; one that is riddled with disease, sickness, and death.  God never intended it to be that way, but He loves us and can bring beauty from ashes, joy from mourning.

Right now, Toby's having his 26th surgery (I think - I may have lost count, and what about those times when he was put under for multiple procedures), but it's roughly 26. He rolled into the hospital with a smile on his face and cheers - he is happy to be here. He has good people caring for him, and knows he gets to watch a lot of Disney Jr. I had to remind him to be quiet because people were sleeping. His favorite nurses came by to say hello, and made his day.  Often times dealing with the emotional/spiritual side of a lifelong disability is harder than the physical, but I'm convinced beyond the shadow of a doubt that God is good.  He is faithful - He has carried us through so far, I know he won't stop.

This week Caris asked me what it meant to trust.  My reply was that trust is believing that what someone says or does is true. I know I can trust God because He has proved himself faithful a thousand times over.  I'm so thankful that He can be trusted with my tough questions too.

October 2nd - Toby's Birth

Spina Bifida is a neural tube defect.  It occurs in the very early days of pregnancy before a mom even knows she's pregnant.  The bones of the spinal column don't close around the spinal cord causing a defect in the spine and typically an open hole in the back or causing the most severe form called Myelomeningocele.  There are other forms as well - and you can read about them here

It is the result of genetic and environmental factors.  Many experts say that taking folic acid or having a diet rich in folic acid can help prevent, but it's not a "for sure" thing.  My husband actually has a first cousin that had Spina Bifida on his dad's side.  Just recently my daughter was diagnosed with the MTHFR gene mutation at gene 1289C and C677T, which means she cannot absorb non-methylated forms of B vitamins.  She has to take special B vitamins called methylated B Vitamins so her body will absorb them.  Most over the counter B vitamins are non-methylated, so we get methylated ones through her doctor's office.  I've read that if you aren't able to absorb B vitamins, they can actually become a toxin in your body. I am no medical expert and do not understand all of this, but I have my theories related to this gene mutation and Spina Bifida.  I have not been tested for this gene mutation, and her pediatrician tells me that 40% of the population has this gene mutation and doesn't know it. I find that interesting because Spina Bifida is the "most common permanently disabling birth defect in the United States."

So, on to Toby's birth.

Today, I want to feature Toby's birth.  I was actually due on January 12th or 13th (I can't remember now, isn't that awful), but because of the risk of infection with a vaginal birth and the open hole in his back a cesarean section was our only option.  It took us awhile to choose a good date for his birth. They were coordinating between the days my OB was in the operating room, Toby's neurosurgeon's surgery days, and the most important thing - having the baby before the end of 2006 for a tax credit. You can just guess who in our family pushed that one!  At 39 weeks at 9:59 a.m., Jacob Tobin Holt was born.  He weighed 5 lbs. 11 oz. and was 18 1/2 inches long.  During my pregnancy I began reading a book called Living With Spina Bifida.  There's a part in the newborn chapter that discussed how some time babies can have severe side effects from their Chiari II Malformation such as: stridor, weak cry, difficulty breathing, central apnea, feeding and swallowing disorders, reflux, and failure to thrive.  I was fairly familiar with some of these things because some very close friends of ours have a son the exact same age as Conor who has a trach and a ventilator.  In Spina Bifida, it's fairly rare for kids to run into all of those things at once, but for some reason they caught my attention, and I began to pray that Toby would be able to nurse well, have a good strong cry, and avoid all of the above list.

When he came out, he was screaming and later in the NICU, he peed and pooped on his own, his legs were moving really well, and so we were feeling much better about everything.

Why Jacob Tobin?

Most people don't realize that all three of our boys go by their middle names, and so does my husband.  It's a family tradition, and in spite of my objections, I lost that argument before we had even conceived our first child.  The conversation went something like:

I fell in love with the name Tobin.  It sounds silly, but I first heard the name of a character in a movie, and I liked the way it sounded.  I can remember telling my mom what we thought we might name him and her words were (I don't think she remembers this), "I don't like it!".  My mom and I are very close, and I wasn't offended.  After his diagnosis and some research, we had more reasons to like Tobin and the nickname that we really wanted to call him "Toby.  They both come from the name "Tobias", which means "God is good". It fit perfectly.  Even in the middle of those dark days, God was faithful, and He is very good.   The "Jacob" piece came from realizing that both Conor and Garrett have Biblical first names (Benjamin Conor and Matthew Garrett).  We concluded we may as well stick with the trend, and Jacob Tobin was decided in the car on the way to his delivery!

I wasn't able to hold my baby after his birth. I remember sitting in the post-op area in extreme amounts of pain sobbing.  Bruce and my mom were in the NICU with Toby, and I was alone.  It was awful.  They said I could see him and touch him before his transport to Nationwide Children's, and finally after what seemed like forever, they began to move me to the NICU so I could see him.  We met in the hallway.

That evening my dad brought a photo of Toby to me so I could look at it while I was pumping.  One of my heart's desires were to nurse this baby, and so I pumped as if my life depended on it.  I pumped so much my milk came in before he even really tried nursing.

Around 5:00 p.m. that evening Toby also had surgery to close the open hole in his back.  He came through like a champ.

The next day, my doctor released me from the hospital for a few hours.  I was still cringing in pain from my c-section and was doped up on pain medications.  This day we held him for the very first time:

One of the biggest lessons I learned during this time was a reliance on God like I've never known.  It was so difficult being separated from my baby. Riverside Hospital graciously put me at the end of the hallway away from the nursery and the other moms.  I also learned to cry out to Him in our pain and suffering.  I read the book of Job, and realized that he was identified as a man after God's own heart, but he didn't sit quietly in a corner while he suffered.  He lamented, wept, and I was shocked that God allowed him to talk to Him like that.  It really taught me that it's okay to NOT BE OKAY.  It's okay to grieve though my circumstances, and lay it all at his feet.  That open communication with the Father creates an intimate relationship - and a trust like I had never known before.

Four days later they put in his shunt to treat his hydrocephalus.  Hydrocephalus is where the ventricles in the brain are over producing too much cerebral spinal fluid.  All of our brains produce CSF in the ventricles, but because of Toby's open hole in his back, the ventricles are programmed to produce too much because it's leaking out that hole instead of being recirculated through the CSF system.  Once the back is closed it can cause the brain/head to swell and ultimately death.  This little invention called the shunt is a small catheter inserted in the brain that drains the excess fluid from the brain into the abdominal cavity.

We also learned to straight cath at that time.  Even though he was peeing on his own, all families at NCH learn to straight cath before taking their babies home from the hospital.  I was devastated that he needed cathing, and I remember being ecstatic the first time he peed on myself and Bruce.

On January 4th we took Toby home from the hospital.  I love these photos because he doesn't have a trach yet. I remember feeling completely overwhelmed.  He needed straight cathing every three hours, nursed every 2-3 hours, and we were having to change make sure poop didn't get on his bandage or into his incision on his back.  The straight cathing and nursing didn't necessarily coincide on that every 3 hour schedule, which made for a very tired mama, and the other two boys (3 years old and 20 months weren't even home yet).

When they came home to see Toby, they fell in love with him at once. I  laugh at these pictures, but poor Conor's little eye was turning inward so badly.  He needed surgery to fix his eyes, the glasses just weren't cutting it.  This would happen a few months later.

It's Spina Bifida Awareness Month

Hi Everyone,
It's October and that means Spina Bifida Awareness Month.  Since I don't have as much time to blog as I used to with home schooling, I have decided to repost some posts from last year where I recapped our journey with Toby, his medical issues, and so others can see more about Spina Bifida. If you have any questions you would like me to answer - feel free to ask in the comments section and I will answer through the blog. Happy Reading!


"D-Day" or Diagnosis DayAugust 31st is a date that will forever be etched in our memories.  We went in for a routine 20 week ultrasound, and I had scheduled an appointment afterwards to meet with my doctor.  Bruce and Conor were with me, and of course the doctor was running behind.  I remember Bruce pacing in the waiting room, and I looked at him and said, "I would tell you go to work, but I think you should be here for this appointment."  It wasn't that I had a feeling of gloom and doom, but I think God was preparing us for what was next.  I will never forget the look on my doctor's face or the words out of her mouth, "There's something wrong with the baby."  At the time she didn't think it was Spina Bifida; their biggest concern was the shape of his head - suspected hydrocephalus.  Conor hid in the corner as I broke into sobs, and Bruce's stomach had dropped out that he almost passed out.  A few hours later - minus Conor - we were sent to OSU Maternal Fetal Medicine, and a level 2 ultrasound confirmed the diagnosis: Spina Bifida and Hydrocephalus.  The doctor told us we had options....termination if we wanted to.  It wasn't something we ever even considered - I could feel him kicking inside of me, moving...I had life inside of me.  We knew no matter what lay ahead, God would be faithful every step of the way.

The e-mails, letters, and cards full of verses and encouragement came pouring in.  Some of the best advice was, "God has a plan for your baby."  Another wonderful mom - Carol Lyden - who's own daughter has Spina Bifida ran into me in Meijer one night.  She hugged me and said, "Congratulations".  Although, at the time I didn't completely understand what she meant, I do now.  Having Toby has changed our lives forever - for the better.  I was asked today during a presentation to nursing students at NCH what has been the biggest life lesson I've learned.  My answer: "My faith in God is deeper than ever before, and I've learned gratefulness."  No matter how bad it is - we always have hope.  Even in death, we have hope - the hope of heaven.

So, our experiences with NCH began even before Toby was born. We were referred to their Fetal Diagnostics Program. This helped us prepare for Toby's birth.  We toured the NICU, met with doctors in the Myelomeningocele clinic, and met our neurosurgeon who would perform his first two surgeries.  I even had a fetal MRI.  I have heard so many stories of doctor's giving parents horrible predictions and worst case scenarios of what their child won't be able to do.  That was not the case with us.  Mostly, they just educated us about the beginning of life, birth, and the rest was left to God. I'm so thankful for that.  Our first experience with family centered care.  Stay tuned for more tomorrow....

The Good, Bad, and Ugly of Home Schooling

I haven't written much about our decision to home school this past year.  It's felt very private, I guess, and I wasn't ready for the questions or criticism that might come with it. I can tell you that it wasn't an easy decision.  Two falls ago, I began to feel this nudge from the Holy Spirit during a Bible study on Genesis and Abraham, and trust me in saying that I fought God on it for months. I would read questions like:

“What things of the world around you is God calling you to leave behind in order to follow His word and trust his promises?  In what way is He asking you to trust Him, though you cannot see ahead?”

"Where has God called you to separate yourself to Him?”

“Are you hesitating right now to answer a call from God, because you are afraid of what you might lose, rather than moving forward according to His promises?”

“As you discern God’s will in your life, whose voices are more important to you and which are you more willing to obey – the voices of your family, your friends or your Lord?”

“The thrill of undertaking a new challenge or answering a new calling always comes with a cost.”

“God calls His children to take the long-term view.  Where does shortsightedness undermine you or the future of your family?”

 “What do you look for first as you make choices?  Do you choose based on what will bring you and your family closest to God by faith?””

“What struggle with fear are you experiencing right now?  Will you trust God rather than forming a wrong strategy of your own?”

“How will you reject your fear and your own designs, and trust the Lord for His direction and protection for your life?  Will you trust the Lord to fulfill every promise He has given you in His perfect timing.?

“What are you holding back from God because of fear?  What new step of obedience has God called you to take?  Will you dare to begin to experience even in small ways God’s similar blessing on your life?”

Can you say "Dagger to the heart?"  And trust me, there were even more quotes and questions to this - I had to cut it down so this post wouldn't be a chapter in length.

We loved the schools the boys were in (Toby in one different from Conor and Garrett) - but God was moving, and so we began to pray.  Bruce wasn't as convinced at first, and so I also committed him to prayer, and eventually God moved his heart also.

How did our year go?  How is the new year beginning?

Our first year has been rough - crazy rough.  We had really good days and really bad days. There were days when the kids are fighting/arguing and driving me absolutely crazy.  There were days when I am/was hauling all four to the hospital for an appointment for Toby, and I worry about everything they are missing.  Then there are wonderful days.  Days where all four kids are playing together on their own - Toby is included. We are doing a fun experiment in science, and they are really learning the material.

The new year has begun, and this time Toby has joined us.  We joined a home school community called Classical Conversations.  It follows a classical form of education, and if you aren't sure what that is - try reading:

The Core: Teaching Your Child the Foundations of Classical Education by Leigh Bourtins
A Well-Trained Mind by Susan Wise Bauer
Simply Classical: A Beautiful Education for Any Child by Cheryl Swope

All three have really influenced a change in how I look at education.  I won't go into that now, but we are two weeks into it and I can say that I LOVE IT!

What I’ve Learned Our First Year of Home Schooling

1.  Homeschooling is not just doing school at home:

It's exploring, investigating, taking the time to truly learn something together.  It's doing life together.

2.  Before you begin your year or even your journey, work out your main goals and purpose and write them down.  When days are not going so well, go back to those goals and remember the main reason why you are doing this.

For us, God called us to it out of a great private school situation, I must admit, kicking and screaming.  We were comfortable, we have Toby, who is in the hospital almost every other month – I had no idea how we would make this work, but it’s worked.  The main reason was that we felt the kids needed our family to be just that – a family - moving in the same direction.  Our main goal is for our children to know Christ, to grow in our relationships with Christ and each other, and to glorify Him. That is happening - our kids are more content, settled, our life is actually less chaos.  TRULY IT IS LESS CHAOTIC!

2.  Curriculum isn’t meant to be followed word for word, step by step.  Tailor the lessons to your kids and to your needs.

                I scrapped so many curriculums last year it’s not even funny, and I bought one curriculum I thought I would love, and I didn’t.  The point is that if something isn’t working it is okay to change.  That’s been very hard for me to accept, especially when I felt like I was wasting money.  I also learned to change the curriculum to fit my kids.  Late December, I realized with a sinking feeling that my fifth-grader was in a fourth grade math book, and he’s really bright in math.  He was bored, and I was frustrated that I had missed this.  I had to let it go, we ordered the right level and will catch up this year.

3.  Sometimes four kids are all going to need help at the same time.  I needed to learn to function in chaos. 

It’s very hard for me to work in disorder and function in chaos.  I really struggle when my schedule is up in the air and the whole month is not planned out in advance.  Homeschooling has taught me to let go of that schedule and roll with it.  There were days we completely skipped the books to work together to clean the house.  Days when one appointment at the children’s hospital took an entire day and the kids were working from their backpacks.  Home schooling is about doing life and doing it together.  I really had to let go of the guilt that some weeks we were spending so much time at the hospital or missing days of school work because our son had yet another surgery.  God gently reminded me that it’s good for the kids to see how my husband and I were handling these situations, being real, and learning life lessons instead of school lessons.

4.  Keeping a schedule and being prepared is important, especially for kids that easily get distracted.

Our best days are those when I am up before the kids, have had my quiet time with the Lord, prayer, and planned our day.  I am not a morning person and so this is really a struggle.  When the kids had to be at the bus stop by 8:15 a.m. it was almost easier because we were accountable to the school to be there on time.  With home school our days are more relaxed, but I’m striving to keep that accountability in place.  It grows my relationship with God, my husband and my children.  All of us are also learning flexibility. I have one child that is very self- motivated and can complete his work without too much prodding from mom, and another that is extremely reluctant to do much without me holding his hand.  There are days I feel like pulling out my hair, but then I remember the main reason we are doing this, and we keep going!

5.  Learning happens anywhere and anytime

I used to be a school teacher. In some ways this is helpful in home schooling and in some ways it means I expect home schooling to be like a classroom, which is definitely not the case.  I am learning to create learning opportunities everywhere we are – at the grocery store, gas station, even doctor’s appointments.  Another mini-goal we have had is to teach our kids to critically think and become life-long learners. There were times when I just wanted to give my kids the answers to problems so we could be finished with the subject and move on to the next (I had to check off that box), but that’s not learning. The best way we can do this is to create opportunities for them to ask questions and search out the answers.  Instead of feeding them the answers, give them the tools to learn it on their own.  Another way is to model how we are continually learning and growing in different areas in our lives. 

5.  God is in control and He will fill in the gaps!

There’s a quote that says, “If He leads you to it, He will get you through it.”  There are days I feel extremely overwhelmed by the responsibility of it all – the spiritual, emotional, and educational training that falls on our shoulders.  The Holy Spirit gently reminds me that His power is limitless, and as it is true that I can’t do it all on my own, I can do it only through HIS strength.  We are going to make mistakes, forget things, and even sometimes completely blow it.  His grace is there to cover. A few months ago my sister and I had a conversation about our growing up years and something she said will stick with me forever.  She said, “Would you admit that the mistakes our parents made in raising us have been the biggest areas that God has used for our growth, our repentance, and our good?”  It is definitely the case.  God has used those things to teach me, grow me in my relationship with Him, and refine me.  God is so incredible that He can make something good – even out of our own sin.  I’m amazed at that and in awe of His grace.   “And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.”  Romans 8:28

Finding the Right One

Our biggest prayer request right now is for us to find the right nurses. This is a huge weight on me, and I am trying to trust God, but it's also difficult at times, because I feel like we are getting looked down upon because we didn't just hire the first nurses we interviewed. Please pray for us in this. Toby is doing great - my mom is here again (thank you, Lord for providing for the other boys!), and we have our training on the ventilator today! :) Yikes! Thank you in advance for praying specifically about the nurses.

Walking on the Water

The last few Sundays the messages at church have really been convicting my heart and encouraging me at the same time. We have been talking about missions and our responsibility to step out in obedience to whatever God calls us to do.  We've asked ourselves, "What is God calling me to step out in obedience to?"  Our worship band began singing Hillsong's Oceans.  It isn't exactly a new song (the album has been out a year), but it's new to me.  God has been using this song and Stephen Curtis Chapman's song "Take Another Step" to reveal some things.

Hopefully I can articulate this in the way I feel I need to, but in SCC's song - it talks about how life is like being in a marching band during a parade.  You're going along and your steps are strong and straight - the flags are waving, everything is peachy.  Then, a storm comes up.  The lightning and thunder flash and crash, and everything goes black, you aren't sure where to go or what to do.  It reminds me of Psalms 119:105 "Your word is a lamp to my feet and a light to my path."  I heard a pastor say once when the darkness is all around you, a lamp doesn't light up very much - it will shine only right in front of you.  If you hold it by your feet it will light your steps, you don't always see the end or see the big picture, but it will light your path step by step.  God's word does that for us through anything we face in life.  It will light our way if we allow it to guide us.  We may not see the end, but we can see the next step.  In the song "Take Another Step" the message is how as Christians we talk about walking by faith and not by sight, but it's another task when you are actually called to do this.

"But none of us can even begin to truly understand
What it means 'til all the lights go out
And there we are, nothing to hold on to
But the promises God's made to me and you.

If there's an ocean in front of you
You know what you gotta do
Take another step and another step
Maybe He'll turn the water into land
And maybe He'll take your hand and say
Let's take a walk on the waves
Will you trust Me either way

The last part of the song references two instances in Scripture where people were faced with taking steps of faith.  The first is Moses leading the children of Israel away from slavery under Pharoah's rule.  Behind them was Pharoah's army approaching fast to take them back into captivity.  He had changed his mind and he didn't want to let the Israelites go.  In front of them was the Red Sea, God caused a pillar of cloud to stand between them and the Egyptians, "Then Moses stretched out his hand over the sea, and the LORD drove the sea back by a strong east wind all night and made the sea dry land, and the waters were divided." (Exodus 14:21).  Moses had to have faith that when God told him to stretch out his hand God was going to do something.  The people had to have faith walking through the middle of that sea, that the waters would not come down on them.  Each of these steps required obedience and faith on their part, that God was faithful and He would be their salvation.

In the second part of the song, it's referencing Peter.  Jesus had just fed the five thousand plus women and children with five loaves and two fish.  Then, He made the disciples get into the boat and go before him to the other side.  He dismissed the crowds and then went into the mountains to pray and be alone.  The boat was a long way from land and a big storm came up.  They saw someone or something walking on the water. They were afraid it was a ghost, but Jesus spoke to them and told them not to be afraid.  That's when Peter asked, "...Lord, if it is you, command me to come to you on the water.  He said "Come".  So Peter got out of the boat and walked on the water and came to Jesus." (Matthew 14:22-33) Sometimes, Peter has a bad reputation because eventually he takes his eyes off Jesus and begins to sink, BUT he was the only one to get out of the boat.  

God is teaching me that sometimes He's asking us to take steps of faith when things are going well.  Our steps are sure, and that still small voice calls us to obey Him in a certain area.  Sometimes, though, it's through trials and difficulties.  The storms come, and He's asking us to trust Him and have faith through this. We have to trust His promises: "I will never leave you nor forsake you.  So we can confidently say, The Lord is my helper; I will not fear; what can man do to me?" (Hebrews 13:5b-6)

So, this morning during church I sat sobbing while our worship team sang Hillsong's Oceans: Where Feet May Fail.  I'm pretty sure that anyone whoever sees me at church on Sunday thinks I'm always an emotional basket case. I can't explain it, but almost every Sunday, God is speaking to me through the messages and the songs - convicting me, teaching me, and yes, inspiring blog posts.  I don't know if part of it is the emotional release of praising God through song, and the fact that all week I am holding myself together, never focusing on the hardships of our journey.  Then, on Sunday I have time to stop and get perspective, to really focus on HIM (although I try to have quiet time every day).  But, it's also my day of rest, not only physically, but emotionally and spiritually - a day of release to lay my burdens down (not to mention our Pastor's messages are truly Holy Spirit led).

The way this song speaks to me is that in our case with Toby, we did not choose this journey of special needs.  We didn't choose special needs, hospital stays, agony, pain, and hard things.  Sometimes people do choose this journey- God calls them to adopt children with special needs and they take that step of faith and obedience.  However, God chose this path for us - He called us anyway through allowing circumstances that then forced a decision on our part.  Were we going to trust, love and obey with how we lived our life through it or would we fight against Him, shut him out, blame Him, grow bitter, cynical, and let it destroy our faith? Would it grow our faith or end it?

The song "Oceans" says:

"Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior"

I realized this morning, that my feet would have never wandered into this with Toby - I would not have chosen it, but God led us to trust without borders.  He has taken us deeper than our feet could ever wander. There have been several blog posts lately about how sometimes that phrase "God will never give you more than you can handle" is really not true, and I agree.  I cannot handle this in my own way, my own strength, or with more faith in myself.  It's His strength, His promises, His plan that I trust.

I also realized that if I had to go back and God allowed us to choose - I hope I would choose this path all over again...I truly think I would. Not because I'm a hero or a martyr, but because of how my faith has grown, what I've seen God do, how I've seen it grow all of us.  I often tell others I know God in a way that I never would have, had life's journey not taken us down this path.

This song is also my prayer that God will lead me into a place where my trust for Him is without borders, to take me deeper with my faith in Him. Sometimes that's really scary, and I do wonder what God will call us to next.  Not that I believe He wants to cause us pain and heartache, but He does want our faith to grow - He wants us to be ever living life dependent on Him.

A few weeks ago I was getting Toby ready for church and he said something to me that he really hasn't ever said, "Mom, why do bad things always happen to me?" (I believe he was talking about all of his surgeries). It was a really tough question and I stumbled a lot, but basically reminded him that yes what he goes through is very hard, but we still have much to be thankful for.  Then, I reminded him of heaven, and the fact that we have the hope of heaven when we know Jesus as our personal Savior (which he does).  One day he will run and not need his wheelchair. One day he will not need his trach to breathe.  He asked me, "Mom, how does God do that?"  I told him that it's through God's power - He makes all things new and Toby said, "It's kind of like magic."  I told him yes that God's power is amazing!

No matter what God calls us to do - whether by asking us to choose a path He's called us to (ahem...homeschooling) or causing circumstances to change the course of our life the hope of heaven is ever sure.  He is standing on the waves holding His hand out to us - we just have to step out of the boat.