Every Step of the Way

We have been really slow on getting the word out, but Toby has chosen to participate once again in the Nationwide Children's Columbus Marathon. He will be a part of Mile 19, which is the Encore Mile involving most of the children or alumni from the marathon last year.  It's been hard for me to get my act together with our crazy summer, Toby's several surgeries, home schooling, and just life in general.  Bruce and I are actually running the half-marathon this year.  It will be my third race and his first.  Training has not been as consistent as in the past, so I'm not expecting to go under 2 hours as in past years, but we are excited to be doing this together.  It's the first time in almost twelve years that we have had time (and the childcare and nursing care we need) to run together.

The count down has begun.  We have 25 days until the race.  Starting today (or tonight) I want to feature photos of Toby, share his story and how we are so thankful that Nationwide Children's is right in our backyard.  Although not every experience has been picture perfect, they have been with us every step of our journey.

We have also set up a fundraising page...click here

25 Days Until Race Day:

August 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.... 

Double Digits

I can't believe Conor is now in the double digits.  The big 1 - 0!  Where have the last 10 years gone?
It seems like yesterday he was just a baby.  After two plus hours of labor, an hour of pushing on my side, an internal saline catheter, an internal fetal monitor in his head, six pounds and eleven ounces of bouncing baby boy came out.  It's a boy!  We had not found out what we were having.  It's a shocker, I know.  I am your typical planner/control freak; you would think I would want to know so I could plan, decorate, and prepare. We didn't, though; I also LOVE surprises - really love surprises, and there isn't much more fun than having the doctor declare, "It's a boy!" or "It's a girl!".

I remember that Conor was really strong.  He came out of the womb raring to go.  In this photo he was just a few hours old, and he was already trying to hold up his head.  He has been raring to go since the beginning and hasn't stopped since.

In this picture, Conor is one-year old.  I just love his hat and little smile.  Again, I'm just amazed at how fast the time has gone.  I know that this has contributed to our decision to home school.  Our children's pastor at church told me there's an app called "Legacy" in which you put in your child's birth date and it counts down the time until they graduate.  It's crazy, but we only have so many minutes and hours to pour Christ into our kids before they are gone.

Conor, essentially had two birthday celebrations.  One was with family.  For Toby's fifth birthday we learned about an organization called Icing Smiles.  They do special cakes for kids/siblings that have life threatening illnesses.  I had prayed about whether to do one for Conor this year, and then I had the thought - if something happens and Toby's medical situation would interfere with Conor's birthday, I'll get a cake.  Just a short time later we learned that one of Toby's surgeries would happen right before Conor's birthday.  That sealed the deal, I contacted them and they enlisted a local baker to make this cake.  It was amazing.  We were actually able to keep the cake a secret from Conor. He is so nosy and listens in on every phone conversation; he wants to know everything, but this time I was able to pull one over on him.

We joked that this was the birthday that never ended.  Toby was released from the hospital the afternoon of Conor's birthday, and the following weekend he had a party with his friends.  They played football outside, rode scooters in our basement in the dark with only glo-sticks to light the way, ate, had cake, and a few slept over.  They had a lot of fun!

I know a few of these pictures are blurry (my camera is awful), but Conor has such a great look on his face of laughing; I just love it.

Playing football!

Doing a group shot - serious and then silly....

To top the birthday off, Bruce has a friend that owns a Ferrari, and Conor had a chance to ride in it.  It really was the icing on the cake!!!

Even little brother got a chance to take a ride!

Permanence

Is it alright if I'm completely honest about this journey as a mother to a child that has special needs?  Since you said, "yes", I'll continue, and even if you said "no".  In the very beginning when we learned our sweet unborn baby had Spina Bifida, it was hard.  August 31st is the anniversary date and most parents will tell you that it's the date of a turning point in their lives.  It's a date that defines the "before" life and then the "after" life.  I grieved, I struggled, but truthfully I didn't really struggle with the acceptance.  It was the way it was, and either we were going to embrace the situation, heal and move on or we would be miserable.  I clearly remember having a conversation with my Mother-in-love (yes she truly is!).  She mentioned that she was praying for healing, and my response was that she could continue to do that, but I really felt like God was telling me "No, I'm not going to heal Toby; I have chosen this path for you, and will walk with you through this."  I also didn't struggle with the "why?" Again, this is my experience and I'm not telling you this to say it's wrong to ask why, I just didn't.  I felt like I could accept the "whys".  My faith in Christ began at a young age, and I know that here on earth we will experience suffering and trials.  Bruce and I had just finished a Bible study in the book of Ephesians, literally weeks before the news, and we had learned about trials.  I know that we suffer for many reasons, but here are a few I've learned:

1. So our faith grows to maturity and genuineness:
I Peter 3:6-7 "In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.  These have come so that your faith - of greater worth than gold, which perishes even though refined by fire - may be proved genuine and may result in praise, glory, and honor when Jesus Christ is revealed." and
James 1:2-4 "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.  Let perseverance finish its work so that you may be mature and complete, not lacking anything."

2. So we learn to trust God and not ourselves and learn a greater dependence on God:
II Corinthians 12:9a - "But he said to me, "My grace is sufficeint for you, for my power is made perfect in weakness..."

3. We live in an earth that is cursed by sin, and bad things happen to all people:
Job 5:7 "Yet man is born to trouble as surely as sparks fly upward."

4. To learn gratefulness and thankfulness - there is always something we can be thankful for in any circumstance:
"In everything give thanks; for this is God's will for you in Christ Jesus."

5. We are able to comfort others with the comfort we are comforted with and are able to help others that are going through rough times.  There is something wonderful being able to relate to others that really truly "get it" - they understand what you are going through.
II Corinthians 1:3-4 "Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God."

6.  For God to be glorified:
John 9:1-3 "As He passed by, He saw a man blind from birth.  And 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."

7.  So others will be drawn to Christ through our testimony:
Psalm 40:1-3 "I waited patiently for the Lord; And He inclined to me and heard my cry.  He brought me up out of the pit of destruction, out of the miry clay, and he set my feet upon a rock making my footsteps firm.  He put a new song in my mouth, a song of praise to our God; Many will see and fear and will trust in the LORD."

BUT, right now I'm struggling with the "permanence" of our situation.  I have mentioned this before, but when you have a special needs child it's the trial that doesn't go away.  The alternatives are death or Christ returning to take us to heaven.  The first is unfathomable to me - or something I wouldn't wish for, and the second is imminent, but we can't predict if that will happen in our lifetime.  So, we have to continue on living. It's not as if I'm living every day in a cloud of gloom and despair, but grief has a way of sneaking up on you at a moment when you don't expect it.  It can cause a perfectly normal looking woman to burst into tears in the infant department at Babies 'R Us because her child never got to wear those sleepers with zippers because of his feeding tubes, or at the park watching all those kids running around - her child will NEVER walk.

Last week in church was a perfect example.  Our pastor is preaching a series called "Reel to Real" The "reel life" being what everyone sees: the FB, blog, movie version of our lives where we put our best foot forward. The "real life" is what is true, real, etc.  Every week there has been a short video sharing people's "real" stories of God's transforming grace.  This week it was a story of a wonderful family and how their daughter was diagnosed with multiple sclerosis.  After a few years, she has been mostly healed from it.  Then....I lost it.

Healing - something that I do pray for in Toby, but don't expect this side of heaven.  I know that he has been healed in many ways - he's talking, he eats some solid food, he doesn't need his ventilator all the time, BUT he won't be healed, and for the first time in my life I'm asking why.  I know the answers, "My grace is sufficient in your weakness. "We are going to face trials of many kinds so it produces patience in our lives." But, I am needing something more - I want a personal answer for me - why did God choose us, this situation with Toby - why did He allow it to be so hard, so permanent?

There have been many friends along the way - some who do not have special needs children, but you can sense in them an understanding and empathy not many others show.  I am so thankful for these friends.  They are listening to the voice of the Holy Spirit.  They take the time to hear beyond your words, to listen, hug you, pray for you, at the exact right moment sense your needs and somehow give you the right words to explain what you are going through. They take the time to show empathy.  A dear friend gave that to me this morning - She said it, "Carrie, it's the permanence of it, isn't it?  She hit the nail on the head.  I'm struggling with the permanence, why did God allow Toby to have "this" version of Spina Bifida?  Again, I'm not walking around in doom and gloom all the time, but the grief has a way of sneaking up on me and yelling "Boo!"  Then I burst into tears and have to leave church to sob because I can't contain my grief (and I did).

I know God is saying to me a couple of things: "Seek me and find me - pray for the answers you are seeking." Secondly, that I have to continue to take every step in faith - not comparing our situation to others, but trusting that God's plan is perfect - it's completely perfect for us, right now, in this moment, for our situation.  His grace will be sufficient; His love will be there - it's greater than anything I can realize or expect. Lastly, as our pastor said this past Sunday this is about God's glory - showing His glory through our stories. It's not about me, it's not about Toby - it's God's story - His ever sufficient grace and mercy picking me up daily to not just survive this journey, but to thrive and have true joy.  Psalm 40:1-3 (see above) has sort of become my theme for this special needs life - my goal, my desire.  The last part says, "He put a new song in my mouth, a song of praise to our God; Many will see and fear and will trust in the Lord." If one person comes to know the Lord - to have a personal relationship of complete dependence on Him through our situation - it's worth it.  If one person is encouraged in their faith and is more intimately connected with the Father - it's worth it.  My prayer is that many will see our faith and will trust in the Lord because He hasn't failed us yet!

I'm a Wimp!

I just have to give some accolades to all single moms and dads, and anyone who has a spouse deployed or one that works and is gone a lot.  Here's why, and it starts with a run-down of my day:

6:00 a.m.  - Alarm goes off, and I hit the snooze button a few times, then realize Bruce is up doing his 10-minute workout that he does every morning (he's so disciplined).  I know that I should probably get out of bed, and then the idea comes that if I beat him into the shower, I won't have to squeegee it afterwards (Rule in our house - last person in our shower has to squeegee the water off the tile).

6:40 a.m. - Toby is awake already.  That kid can go to bed at midnight and still wake up around 6:00 a.m. I get him up early to see if we can manage to do a mock run-through of what school will be like tomorrow. He takes FOR--EHHH-VER to eat breakfast, especially because we're including solid foods in his diet now, and every meal is a struggle.

7:00 a.m. - I've eaten breakfast, and am working on cutting up vegetables to get dinner for our neighbors in the crockpot - they just had a new baby (insert "ooohs and aahhhs")!

8:00 a.m. - All the kids are up; Toby is back with his nurse getting ready, having managed to eat breakfast a little faster this morning.  I'm frantically trying to finish the dinner so we can get out the door at 8:15 a.m. Toby has an ENT appointment at NCH (downtown) this morning.

8:50 a.m. - We arrive at the hospital, having managed to arrive about 25 minutes early for his appointment. Why so early you ask?  I wanted to get Conor, Garrett, and Caris into the sibling clubhouse, which is now located at the opposite end of the hospital from our appointment.  Because the handicap lot still has free parking and is closer to the appointment; we opt to park there, walk the distance and manage to get the kids in right away - then trek back to the other end for the appointment.

9:45 a.m. - Toby's appointment went well.  It was a follow up after his bronchoscopy and ear tube removal. She opts for a hearing test because he hasn't had one since infancy.  He passes with flying colors.  I joke with our nurse that "at least something on Toby works the way it's supposed to."  In this journey, we have to keep our sense of humor.

10:08 a.m. - I manage to make it back to the sibling clubhouse before the allotted pick-up time of 10:30 a.m., and we head home without traffic to run a few errands.

In order to not put anyone to sleep that is reading this - the rest of our day consisted of: a few more errands, a text from a friend to meet up for lunch - hey why not?  I'm always up for Chick-Fil-A.  Caris down for a nap; reorganize Toby's medical supplies and update his medical history; make some phone calls for some volunteer work; finish dinner for our neighbor and deliver; hold the sweetest newborn baby girl; hurry home to eat the other half of dinner and then rush all four kids in the van only to arrive late for Garrett's soccer practice once again (I didn't use to be late all the time).  Caris, Toby, Conor, and I played in the park during practice, and by 7:45 p.m. we are headed home.  At this time Conor is in tears with a headache that we can't figure out the origin of, and then has chills. I sent him to bed while I get Toby ready for his hour long bowel clean-out process, then realize that Conor is probably having side effects from the flu-mist vaccine he received on Monday - FABULOUS!  We skype with Grandma and Grandpa while Toby is on the potty (no shame here) and Garrett manages to help Caris wash her feet, get her a snack, and read her a story.  He always steps up to the plate when I need him and Conor is MIA.  At 10:04 p.m., Bruce arrives with a peace offering (caramel sundae) because he has been gone since 7:00 a.m. this morning, and knows that I struggle through days like this when he's not home in the evening to run one-on-two defense with the kids vs. one-on-four like tonight.

I cringe every time he calls me to let me know that he has a late appointment or meeting, especially the nights we don't have a nurse in the evenings to help with Toby.  It's rough - and I realize a few things:  a)I'm thankful for my husband, and pray for those that do this parenting thing alone for whatever reason, and b) I'll readily admit that I'm a wimp - and have a hard time surviving without my other half, so I'm thankful he has the job he does, and the next time he tells me he has another late meeting I'll try not to complain as much!

....By the way, did I mention my sweet Toby is starting kindergarten tomorrow? Boo - hoo!

I Can't...I'm in a Wheelchair

So, this blog post has been especially difficult to write because I'm really grieving.  I'm sobbing as I type. Finally, two friends helped me to admit that:

I'm scared about Toby's future, terrified really, and I'm grieving about it.  I'm also upset - upset that he can't walk, or even crawl and may never do either.  It's really hitting me hard... really hard.

Just recently a friend posted on her son's Caring Bridge page how she's struggling with comparison - comparison being the thief of joy. (Please read her July 31st entry - scroll to the end);  I was so thankful for her post because it helped me finally admit to myself, and my Savior that I'm struggling with comparison too - and fear.

Tonight as I was getting Toby dressed after his night-time bowel routine, I put his shorts on and prepped him to leave his room.  I told him,  "Toby, you really are going to need to start doing this (meaning putting his own shorts on) all by yourself."  His reply to me, "I can't, I'm in a wheelchair."

It broke this mommy's heart....

Of course, I told him about all the amazing things that kids can do in their wheelchairs, that yes of course it's harder for him to put his pants and shorts on, but that he's done it before.  He is stronger because of it.  But, honestly I just want to sit down and have a pity party.

I've been playing that comparison game again and it is robbing me of my joy...so and so's child is participating in that cool sport, so and so's child is walking now, so and so's child is etc. etc. etc.  Some days I need to get away from Facebook, and stop reading everyone's updates.  I try to focus on the things that Toby can do, the things we can be thankful for- He's alive, He isn't on his ventilator 24/7, etc.  BUT some times I don't even want to do that. I just want to cry, sob, and throw a little temper tantrum that "THIS ISN'T FAIR!"

Then, the fear creeps in.  Fearful that we aren't letting him get involved in enough sports - being active enough so he'll be active when he's older.  Adults with SB really struggle with weight issues as they get older, especially ones in wheelchairs and then it affects their quality of life.  I really want him to be active and fit so he doesn't struggle with that.  I fear that he is too dependent on us, that I do too much for him.
Another big struggle with adults is time management and independence.  With Toby's recent back surgery he really hasn't been able to do much by himself.  He has contractures now in his hips and knees, so his knees can't extend completely, which means he can't stand.  His braces don't fit him anymore, and his old ones kept his knees locked straight.  It's not safe for his tendons/joints to have them straight, if we could even get them straight in the braces because of the contractures.  The rods are also prohibiting any type of intensive physical therapy.  Every time we leave PT, I feel more discouraged because she tells me more exercises and movement he should/should not do.  She's been communicating with his orthopedic surgeon.  Most recently it was no twisting of his spine, so hitting baseballs.  Yesterday, in desperation, I asked her if we can work on crawling (army crawling) so he can be more independent.  We are still transferring him in and out of bed, in and off the commode, in and out of his shower chair.  She is worried that it will extend his spine too much, put too much pressure on those rods and go against the doctor's orders.  It crushed me - so all he can do is sit in his wheelchair? That's all!!

Just a few days ago, I told Bruce that I felt like we sort of got the double whammy with Spina Bifida AND the trach.  We love the water,  the beach, water skiing, water parks, the Great Lakes, camping, etc. (well, Bruce doesn't LOVE the beach so much), but it's really hard to take our kids to those places because of Toby.  He has a trach - he can't be immersed in water because it will go directly into his lungs.  It might cause an infection or worse drowning.  Is he still going to be sitting in the zero-entry end of the public pool when he's 10 or 15?

Another friend who has a younger child with Spina Bifida and a trach wrote a blog post recently called "Standing is Stupid".  (Her blog is amazing by the way - she has a gift with words).  It's an amazing perspective and one that I'm struggling to accept - that Toby may never stand or walk or swim or run, and that is is okay.  We will have to focus on the things he can do - and give him as much independence in that chair.

Toby loves to play doctor.  He doctors his JT doll (It's his Medical Mini-me), and one of his nurses always plays as his assistant.  We need to foster that love, and continue to encourage his independence.

One day none of this will matter at all - He will walk, run, and breathe in heaven and God will make him whole.  For now, I will grieve, cry and have my fit and when the sun comes up in the morning I'll set aside my grief and move on because that's what you have to do - keep moving on and accepting that God's grace is sufficient even when Toby's in a wheelchair.

Making Crayons and a Visit with Aunt Lynsey

So, I've been trying to plan fun activities for us to do together this summer.  Unfortunately, it hasn't gone as well as I've planned for various reasons, but we have been able to do a few fun activities like the pool, visits with family in Michigan, and some crafts.

I've always wanted to do this craft - a way to recycle old crayons.  The idea came from here.  I collected some tin cans over the course of a few weeks, and then we sat and peeled crayons.

We boiled the crayons in the tin cans until they melted, and then poured them into old pill containers I had been saving (good thing that I've needed several prescription medications in the last month!).

We had to make sure that the layers were really hardened before we added the next one.  I learned a few things that we would do differently if we try this again.  They slide very easily out of the containers when they are cooled off.  Caris enjoys coloring rainbows with them.

A Visit with Aunt Lynsey (or "Aunt Lou Lou" as the kids like to call her)

My sister and brother in law have been living in Nicaragua since last September.  Every so often one or both of them are able to come back to the States for a visit and take a break from living in a third-world country. Aunt Lynsey came to visit for about a week, and we had a blast.

One of the items on our "fun" list for the summer was ice skating.  Conor really loves to ice skate; his secret dream is to play hockey, but with our family's schedule and Toby's needs it just hasn't been a road we have been able to travel down at this point.  On a day when it seemed silly to be wearing jeans and sweatshirts (I think it was 85) we went to the ice rink.  It was Caris and Toby's first time:

Toby absolutely loved going fast around the ice.  He would get upset when Conor or Garrett wanted to push him because they were too slow.  They were disappointed because it was easier to skate with something to hold on to!  Caris did fairly well too, and it was a great time to skate because the rink was mostly empty.

Sticking with the "snow" theme; during the winter when we got a lot of snow one day I remembered that Lynsey and Anthony were lamenting the fact that they wouldn't see snow this year.  I know that many southern birds don't mind never seeing snow in winter, but we grew up in Michigan and LOVE the snow. So, I made a few snowballs and put them in our freezer until Aunt Lynsey came for a visit.

We didn't exactly get to have a snowball fight, but she enjoyed it anyway.  We put it back in the freezer for the next time when Uncle Tony comes too.

Summer isn't summer without a trip to get ice cream.

Or taking silly pictures with Aunt Lynsey.  She and the boys are always trying to see if all three of them can fit into a shot while she holds the camera herself.  After many takes - they finally got one.  It was a wonderful visit, and of course we miss her already.  She had to fly back July 12th.  We are looking forward to when they are home again!

Strawberries, Baseball, and Concrete

The summer has been flying by so quickly.  The weather for the most part has been beautiful.  Toby doesn't tolerate the heat well, and for that matter neither do I.  So, on the really hot days we stay in the house in the wonderful air conditioning and thank God that we have air conditioning, and that someone had the brains to invent it! (Truthfully - I do!)

Grandpa Holt had a great idea of making the kids hand prints in concrete squares.  I was really excited about this: A) because our kids are growing up way too fast; B) I had wanted to put their hand prints in the concrete of our drive way when we built the house, and that never happened and C) it's a great decoration for our landscaping.

All the kids helped!

All the boys helped mix the concrete together, put their hand prints in, and then we put marbles or small glass jewels to decorate them.  Their names are in them too - they turned out great.  Here is the finished project.

Toby has also been playing baseball with the Miracle League.  They've had a great season - tied every game ;)!!  One of Toby's doctors even came to the game with his family.  He's been a part of Toby's care team since he was about 6 weeks old, and we are very thankful for his great doctoring that extends beyond the walls of our children's hospital.

In June the three boys went to Vacation Bible School at our past church in Hilliard.  It was right at the time that strawberries were ready for picking.  So, one day on our way back home, Caris and I stopped at Jacquemin Farms and picked.  The strawberries were pretty large, juicy, and oh so yummy.  After we picked the bucket I brought from home, we went back and picked several pounds more - about 15 in all I think.  Caris didn't pick much; she tasted a few, and then spent some time ripping the leaves off the strawberry plants (don't worry I reprimanded her to stop as soon as I figured out what she was doing).

I went home that day and spent several hours washing berries, freezing them, and making freezer jam.  They were very tasty!  I'll update more soon about our summer - much more to add later.