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.
Saturday, August 3, 2013
Friday, August 2, 2013
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!
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!
Sunday, July 28, 2013
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 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.
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.
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| All the kids helped! |
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.
Wednesday, June 5, 2013
What We've Been Up To...
It's been awhile since I've had a chance to post. Life has been crazy as Toby had two hospital stays in April. One for low lung volumes, atelectasis, and backed-up intestines. The second was for VEPTR - Part II on April 23rd. So far the rods are staying in place even though they you can visibly see them in his back, they aren't causing any skin issues. I know prayer is keeping them in place.
The Friday of Memorial Day weekend. Bruce took Conor and Garrett to the Indy 500 - to see the Firestone 100. It's like the "Minor Leagues" of the Indy 500. Bruce said the speedway alone is an amazing sight to see. Then, the race itself was really fun to watch; it was something out of the first Cars movie, but in real life. Here's the link: Firestone 100- it had a really close finish, but I don't want to spoil it for you. You really should watch it.
Toby also lost his very first tooth. I was amazed he didn't swallow it. I was also amazed that he let me pull it out so easily. I was so proud of him, especially because eating, chewing and moving it around with his tongue have helped it come out so easily - all things that we are working on in getting him to increase his tolerance for solid foods.
We also planted a few flowers and a mini-garden - a few tomatoes, peppers, etc.
So, what else is going on? All the boys are out of school for the summer. Toby finished preschool, and will start kindergarten in the fall.
It's amazing how much he's grown. This morning, I found him sitting up in bed for the very first time since his back surgery. He also put on his pants by himself, and is very slowly becoming more independent. One of my big focuses for the summer are his independence and participating in chores around the house. We'll also work on keeping up his academic skills, small motor, etc.
The older two boys are also done with school. Alas, I'm an awful photographer and forgot to take a photo of them on the last day of school (but I will soon, and then I'll have to pretend like it was the last day of school). Conor won an award for his Regional Invention Convention. He won a $50.00 scholarship for "Superior Product Innovation."
The older two boys are also done with school. Alas, I'm an awful photographer and forgot to take a photo of them on the last day of school (but I will soon, and then I'll have to pretend like it was the last day of school). Conor won an award for his Regional Invention Convention. He won a $50.00 scholarship for "Superior Product Innovation."
The Friday of Memorial Day weekend. Bruce took Conor and Garrett to the Indy 500 - to see the Firestone 100. It's like the "Minor Leagues" of the Indy 500. Bruce said the speedway alone is an amazing sight to see. Then, the race itself was really fun to watch; it was something out of the first Cars movie, but in real life. Here's the link: Firestone 100- it had a really close finish, but I don't want to spoil it for you. You really should watch it.
Toby also lost his very first tooth. I was amazed he didn't swallow it. I was also amazed that he let me pull it out so easily. I was so proud of him, especially because eating, chewing and moving it around with his tongue have helped it come out so easily - all things that we are working on in getting him to increase his tolerance for solid foods.
We also planted a few flowers and a mini-garden - a few tomatoes, peppers, etc.
Last, but certainly not least, after much prayer, and light reading:
...We are going to home school in the fall. At first we are starting with Conor, Garrett, and Caris will do some preschool activities too. The bug bit me last fall when the boys went back to school. I really missed them, and began to pray about it. After around a three-four month wrestling match with God, I surrendered to His call. The biggest reason: God is truly calling me to it. The other reasons are to have more time with them - to teach them, disciple them, and truly know them. I feel like after they get home from school they are getting the worst of me, and I get the worst of them. Where does Toby fit in with all of this? Not sure just yet - kindergarten so far is two full days one week and three full days the next. I'm praying on the other days, I will have time to do some home school things with him too, and maybe we can dive in with him the following year. I want more time with him too, but beginning this home school journey with a 5th grader, a 3rd grader, and Toby's special needs felt too overwhelming - like diving into an ocean. So, we are going to start off this way and then go from there. I have more to share about this journey, and my new organizational planning for the summer to prepare us for the fall, but it will have to wait...my bed is calling my name.
Sunday, April 14, 2013
God is able!
This morning in church it hit me like a ton of bricks. I have serious doubts about whether Toby's next back surgery is going to work and not have complications as he did in the fall. So many stopped us this morning asking how he was since his recent five day hospital stay and to tell us that they are praying over his back surgery. One friend said something to the effect, "We're praying in faith." I'm glad she is, because I have doubts.
Our pastor preached on Joseph, and the trials he went through. Through it all, Joseph walked and lived as if he were 100% convinced of God's presence. If you read about it in Genesis, you'll see that it repeats over and over that God was with him, and He caused everything in Joseph's hand to prosper. Even when Joseph was thrown into a pit by his brothers, sold into slavery, rose to second in command, and then later thrown into prison on false charges when Potipher's wife tried to tempt him to sleeping with her. He did the right thing and fled temptation and was still thrown into prison, but God was with Joseph. God was fulling His plan and His purposes. Joseph later tells his brothers as he reveals his identity to them, "...do not be distressed and do not be angry with yourselves for selling me here, because it was to save lives that God sent me ahead of you...But God sent me ahead of you to preserve for you a remnant on earth and to save your lives by a great deliverance." (Genesis 45:5&7).
At the end of the service we sang a familiar song called "God is Able" by Hillsong.
As I sang the words to the song, the Holy Spirit convicted me that I am NOT believing that God is able to keep those rods in place; I'm not asking Him in faith to make this back surgery a success. I know as the "Mom", I have to expect the worst, but hope for the best - to prepare myself. We have had so many things go wrong through the years. Mental preparation is okay, I believe, but it also causes me to be more cynical and in the end have less faith. I have come to expect the worst.
A few years ago, God brought to life the verses in Ephesians 3:20, "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us." He convicted me that I need to stop doubting, but pray in faith that He is going to do immeasurably more than all we ask or imagine in our lives. He has - if I take the time to look back and see what He's done in our family - how far He has brought Toby. He has done immeasurably more - His power IS at work within us.
Tears ran down my face as the words to the song convicted my heart that "God is able."
Here are some of the lyrics:
"God is Able, He will never fail...He is almighty God.
Greater than all we seek, greater than all we ask - He has done great things!
Lifted up, He defeated the grave, raised to life, our God is able.
In his name we overcome, for the Lord, our God is able.
God is with us, God is on our side. He will make a way.
Far above all we know, far above all we hope, He has done great things.."
God is for us - He has open arms, He will never fail us, He will never fail us."
He defeated the grave -- that alone is enough to know that He is able. He will be with us through it all - and He will continue to do great things through us.
In ending - I have to share this photo. After church on Sundays, I often make brunch - today it was yummy whole-wheat pancakes. As I was making them, I thought - Toby can eat this - he should be able to eat a pancake or at least some of it. He's been chewing much better lately - and he LOVES syrup. So, Toby ate several bites of pancakes - ate what everyone else was eating at the table. He didn't gag too much, he chewed - and 6 years ago when he had a G/J feeding tube (a tube that went into his small intestine), and he was hooked up to a feeding pump 20 hours a day, I never expected or imagined I would see this day, but we did. God is able! He is able!
Our pastor preached on Joseph, and the trials he went through. Through it all, Joseph walked and lived as if he were 100% convinced of God's presence. If you read about it in Genesis, you'll see that it repeats over and over that God was with him, and He caused everything in Joseph's hand to prosper. Even when Joseph was thrown into a pit by his brothers, sold into slavery, rose to second in command, and then later thrown into prison on false charges when Potipher's wife tried to tempt him to sleeping with her. He did the right thing and fled temptation and was still thrown into prison, but God was with Joseph. God was fulling His plan and His purposes. Joseph later tells his brothers as he reveals his identity to them, "...do not be distressed and do not be angry with yourselves for selling me here, because it was to save lives that God sent me ahead of you...But God sent me ahead of you to preserve for you a remnant on earth and to save your lives by a great deliverance." (Genesis 45:5&7).
At the end of the service we sang a familiar song called "God is Able" by Hillsong.
As I sang the words to the song, the Holy Spirit convicted me that I am NOT believing that God is able to keep those rods in place; I'm not asking Him in faith to make this back surgery a success. I know as the "Mom", I have to expect the worst, but hope for the best - to prepare myself. We have had so many things go wrong through the years. Mental preparation is okay, I believe, but it also causes me to be more cynical and in the end have less faith. I have come to expect the worst.
A few years ago, God brought to life the verses in Ephesians 3:20, "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us." He convicted me that I need to stop doubting, but pray in faith that He is going to do immeasurably more than all we ask or imagine in our lives. He has - if I take the time to look back and see what He's done in our family - how far He has brought Toby. He has done immeasurably more - His power IS at work within us.
Tears ran down my face as the words to the song convicted my heart that "God is able."
Here are some of the lyrics:
"God is Able, He will never fail...He is almighty God.
Greater than all we seek, greater than all we ask - He has done great things!
Lifted up, He defeated the grave, raised to life, our God is able.
In his name we overcome, for the Lord, our God is able.
God is with us, God is on our side. He will make a way.
Far above all we know, far above all we hope, He has done great things.."
God is for us - He has open arms, He will never fail us, He will never fail us."
He defeated the grave -- that alone is enough to know that He is able. He will be with us through it all - and He will continue to do great things through us.
In ending - I have to share this photo. After church on Sundays, I often make brunch - today it was yummy whole-wheat pancakes. As I was making them, I thought - Toby can eat this - he should be able to eat a pancake or at least some of it. He's been chewing much better lately - and he LOVES syrup. So, Toby ate several bites of pancakes - ate what everyone else was eating at the table. He didn't gag too much, he chewed - and 6 years ago when he had a G/J feeding tube (a tube that went into his small intestine), and he was hooked up to a feeding pump 20 hours a day, I never expected or imagined I would see this day, but we did. God is able! He is able!
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| He is eating pancakes!!! |
Wednesday, March 20, 2013
A Week of Anniversaries
Yesterday, March 19th is an important date in our family. It marks the sixth anniversary of bringing Toby home from the hospital - a very different little boy than what we had expected Spina Bifida to look like for us. He came home with "extras": a trach, ventilator dependent, G/J feeding tube, nursing care. Here is a picture history.
This week of March also marks one year post ETV surgery (March 17th) and the horrible convulsive seizure Toby lived through (March 24th). I still can't look at these photos without shedding many tears. Again, Toby's redefining Spina Bifida!
It's pretty amazing - this week in March marks many anniversaries of this journey - sometimes wrought with fear and sadness, other times joy. Through it all God has been so faithful - I'm so thankful for His grace and mercy - that He answers our prayers. It's not always in ways we would want or expect, but always for our good.
Psalm 40:1-3 "I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear the Lord and put their trust in him."
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| I treasure this photo - because he didn't have a trach yet. |
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| His first bath; that is a size 1 diaper - He swam in it! |
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| Conor holding Toby for the first time. Conor also needed eye surgery just a few months later. |
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| I love those big blue eyes! |
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| Very sick, holding on by a breath (see his respiration rate). |
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| Just got a trach |
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| Beginning to grow and feel better - on a ventilator full time. |
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| Boy, he loved his pacifier! |
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| Home sweet home! |
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| First day home. |
Just recently, I have had some spare time to work on Toby's first-year scrapbook. I am six years behind, but oh well! Last week, I found a notebook that I had kept while pregnant with Toby and afterwards. It was amazing to see the questions I had for the doctors while we were expecting this little baby with so many unknowns. I still have copies of all the encouraging e-mails and verses people sent to us when we first learned our unborn baby would have Spina Bifida. He's been "Redefining Spina Bifida" ever since - paving his own path, doing his own thing. I have heard countless times "it's just a Toby thing" when something has happened we can't explain. That notebook also has a list of all the amazing people that gave gifts, money, and time during that long 64-day stay (the 2nd time around). That notebook also has a list of practical things we would need for our house to bring Toby home with his ventilator, trach, etc. My dear friend Erika helped me with all of that. Tears streamed down my face as I read all of the journal entries on caringbridge of support we've had through family, friends, and our church. Complete strangers that sat with Toby in the hospital who now live just a few miles away and both of our sons went to preschool together. I see God's amazing protective hand through it all - strengthening, changing us, growing our faith.
This week of March also marks one year post ETV surgery (March 17th) and the horrible convulsive seizure Toby lived through (March 24th). I still can't look at these photos without shedding many tears. Again, Toby's redefining Spina Bifida!
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| Waiting for surgery - Endoscopic Third Ventriculostomy |
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| After ETV - in recovery |
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| Anxiously awaiting him to wake up after seizure. |
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| He's awake! |
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| In Rehab - doing therapy, he was so floppy! |
It's pretty amazing - this week in March marks many anniversaries of this journey - sometimes wrought with fear and sadness, other times joy. Through it all God has been so faithful - I'm so thankful for His grace and mercy - that He answers our prayers. It's not always in ways we would want or expect, but always for our good.
Psalm 40:1-3 "I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear the Lord and put their trust in him."
Wednesday, February 20, 2013
Looking Back to Look Ahead
2012 was a really rough year for our sweet Toby. In some ways, I was so thankful to say goodbye to 2012; and greeted 2013 with open arms. Over the past month I've been going back and reading Toby's caringbridge site from start to finish. The main reason has been to organize all of his medical information - I've been typing up spreadsheets by year - recording every doctor visit, test, x-ray, ER visit, diagnosis, surgery, hospital stay, therapy session, nursing visit, etc.
Am I crazy? I just might be.
It's actually been therapeutic and helpful to organize all the information. This way, I'll have it on hand for that next surgery or doctor's appointment. It's also been amazing to see how far God has brought us - and Toby.
It's also difficult to look back. After we've had a rough spell, I prefer not to stop and think about what happened or how bad it really was or could have been. It's time to look to what's ahead - keep moving forward. I remember seeing this saying on a runner's shirt that said, "Never look back unless you are planning to go that way." (Henry David Thoreau, I believe).
The reality of Toby's next surgery is starting to hang like a dark cloud over my head. We are anxiously awaiting the call from the doctor's secretary to give us a surgery date. Over the past two months, I've blissfully been in denial and able to put it out of my mind. Toby's back is healed, and so I have chosen not to think about what's ahead. Just the other day Toby said, "Mom, I just wish my back was straight again." I want it to be straight too, I'm just not ready to live through another surgery, hospital stay - I want to be on the other side of April, well into May or June looking back and seeing a "whole" Toby again. I get weepy if I think about it too much.
He's been so independent these past few weeks. We have been blessed with a wonderful new day nurse that is patient with Toby. She includes him in his care - he is learning to do his own trach care, g-tube care, cathing, etc. He's getting dressed and undressed on his own (well, when he's really motivated). He's using his transfer board - getting in and out of bed to his wheelchair and back again. It's been wonderful. This surgery is going to change all of this.
Lately, I've been hearing Toby say this, "When I get bigger and don't have my wheelchair anymore, I'll be able to ________ (do such and such)." He thinks he'll out-grow his need for his wheelchair. He also thinks that every surgery he has will fix his body so he can walk. Some days, I gently explain that on this side of heaven, he may never be able to walk on his own - he'll always need braces, a walker, etc. Other days - like today - I just let it go. I don't like shattering his view of reality, life will do that to him soon enough.
Here is a picture journal of our fall. Warning - there is a very graphic picture of what Toby's wound looked like below, so you may not want to look ahead if you have a queasy stomach or can't handle the site of blood/flesh.
October 23rd, 2012 - Spinal cord untethering.
November 13th, 2012 - First VEPTR Insertion
November 28th, 2012 - Wound Vacuum Insertion (Warning - graphic photo of progression of Toby's wound from beginning through healing process)
December 11th, 2012 - Left VEPTR popped off rib cage, then surgery to remove all rods. I've never seen him in that much pain. He could barely make it every 4 hours for the next dose of narcotics.
I have no idea what this next surgery is going to hold for Toby or for us. I know that God is God yesterday, today and tomorrow. He already knows and is faithful. Today, I am taking the time to look back and focus on God's faithfulness, and how He carried us through - knowing that His character does NOT change, and He will carry us through whatever lies ahead.
Am I crazy? I just might be.
It's actually been therapeutic and helpful to organize all the information. This way, I'll have it on hand for that next surgery or doctor's appointment. It's also been amazing to see how far God has brought us - and Toby.
It's also difficult to look back. After we've had a rough spell, I prefer not to stop and think about what happened or how bad it really was or could have been. It's time to look to what's ahead - keep moving forward. I remember seeing this saying on a runner's shirt that said, "Never look back unless you are planning to go that way." (Henry David Thoreau, I believe).
The reality of Toby's next surgery is starting to hang like a dark cloud over my head. We are anxiously awaiting the call from the doctor's secretary to give us a surgery date. Over the past two months, I've blissfully been in denial and able to put it out of my mind. Toby's back is healed, and so I have chosen not to think about what's ahead. Just the other day Toby said, "Mom, I just wish my back was straight again." I want it to be straight too, I'm just not ready to live through another surgery, hospital stay - I want to be on the other side of April, well into May or June looking back and seeing a "whole" Toby again. I get weepy if I think about it too much.
He's been so independent these past few weeks. We have been blessed with a wonderful new day nurse that is patient with Toby. She includes him in his care - he is learning to do his own trach care, g-tube care, cathing, etc. He's getting dressed and undressed on his own (well, when he's really motivated). He's using his transfer board - getting in and out of bed to his wheelchair and back again. It's been wonderful. This surgery is going to change all of this.
Lately, I've been hearing Toby say this, "When I get bigger and don't have my wheelchair anymore, I'll be able to ________ (do such and such)." He thinks he'll out-grow his need for his wheelchair. He also thinks that every surgery he has will fix his body so he can walk. Some days, I gently explain that on this side of heaven, he may never be able to walk on his own - he'll always need braces, a walker, etc. Other days - like today - I just let it go. I don't like shattering his view of reality, life will do that to him soon enough.
Here is a picture journal of our fall. Warning - there is a very graphic picture of what Toby's wound looked like below, so you may not want to look ahead if you have a queasy stomach or can't handle the site of blood/flesh.
October 23rd, 2012 - Spinal cord untethering.
November 13th, 2012 - First VEPTR Insertion
 |
| Look at that boy - so straight and tall |
November 28th, 2012 - Wound Vacuum Insertion (Warning - graphic photo of progression of Toby's wound from beginning through healing process)
 |
| (Left to Right) 1. Wound right after they removed the rod and took cultures 2. Wound with the vacuum attached. 3. Healing 4.Completely healed |
December 11th, 2012 - Left VEPTR popped off rib cage, then surgery to remove all rods. I've never seen him in that much pain. He could barely make it every 4 hours for the next dose of narcotics.
I have no idea what this next surgery is going to hold for Toby or for us. I know that God is God yesterday, today and tomorrow. He already knows and is faithful. Today, I am taking the time to look back and focus on God's faithfulness, and how He carried us through - knowing that His character does NOT change, and He will carry us through whatever lies ahead.
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