JOY

Isn't it true that we always want what we don't have or what we used to have. How many times have you heard a parent of a child with spina bifida say, "I'll never take my legs for granted again," or "I'll never take my health for granted," or whatever, fill in the blank. There are many things that I have never thought to be thankful for until my eyes were opened. You don't have to have a child with special needs to relate to this aspect of human nature of course. Haven't we all wanted a better car, a better cellphone a better job? Haven't we all wished for something that we once had- the "good old days," the loved one who is gone, or summertime?

This year, as challenging as it is, I am trying to be content with what I have now. Not, things I wish I had or things I used to have. I don't want my joy to be dependent on things that we're not given to me.

It is painful everytime I see Carson linger behind in his walker while other children run past, it's painful to watch him struggle through a task that would take others only seconds to do, and it's painful to worry about his future. But the greatest pain I feel comes when I find myself wishing and wanting things for him that simply are not for us. This is a dangerous rut that seems to hibernate in depths of myself somewhere and there are days when it all but consumes me. There are days when I just feel bitter and sick of Carson having to be the underdog all the time. There are days when everything just seems unfair. Those days are painful but also self-inflicted. Choosing joy means that I choose to see the gifts that have been given. And Carson is very gifted.

Carson's life has given me so much joy. It is the single most important and significant gift I have ever been given. And although his life meant new fears and new territories for me, God has also given me gifts that I could have never imagined. Choosing joy in our family means that we will never let the gifts that weren't given overshaddow the abundant ones God has given us today.

Lately...

There's really not much to update, but I thought I'd share some photos. Carson was Harry Potter for Halloween and enjoyed passing out Candy. One of the photos is Carson sitting next to his Grandpa, we're still not sure what his costume was :)

Carson has been enjoying his bike. A few days ago we met Greyson and his mom, Leigh, for a bike ride at the park. It was adorable to see the boys together and as always, the playdate turned into a photo shoot. We have been doing various playdates with Carson's friends who have SB and each time I am even more grateful for these friendships.

"....After!"

A few weeks ago I promised before and after photos to feature Carson's "new eyes." As many of you know, Carson had eye surgery to correct the crossing. The surgery definitely improved the crossing, but I'm not completely convinced it was 100% successful. Carson's opthomologist observed him for a few seconds and concluded that the surgery did in fact correct the crossing but I'm not sure I completely agree yet. I would agree that the surgery produced improvements, but I still see his eyes crossing daily. Hopefully in a few weeks at our next appointment, the opthomologist and I will agree on the results... whatever they are.

As you can also see, Carson received an adaptive bike. The handles and pedals move together allowing the child to mobilize the bike using their arms. Carson is able to move both his arms and legs yet even if his arms are doing most of the work it still benefits his legs getting them used to alternating movements; a skill he'll hopefully need for walking.

Carson absolutely loves his bike! It didn't start out that way. Carson's bike was very graciously donated and we received it at an event designed to show the donors how wonderful it is for kids to receive the adaptable bikes. The plan was to put Carson on the bike in front of everybody so that they could all see how much he loved it prompting further convictions to continuous donations. Unfortunately, Carson hated it and cried the entire time. Thankfully he was adorable enough to override the original plan and I reassured them that he would love it in no time. Now he proudly pedals it up and down the sidewalks in our neighborhood. It is such a wonderful thing to have another option than just a stroller. We can now go on walks outdoors with the bike!

I am so proud to share some very exciting news. Lately we have reached the milestone where Carson is using his walker in public places. This is exciting because we have ventured from practising it indoors at home to being able to use it functionally in other places. It will be a long time before he "masters" the walker, but he is confident and capable enough to use it out and about. This morning we brought it to the library to use during the toddler program. I was so proud of him. Watching him walk into the classroom on his own with the other children was a sight I will never ever forget. I had to concentrate very hard to keep from getting visibly emotional. Carson really enjoyed using his walker throughout the morning. I am so proud of him and so excited. It is amazing to be blessed with moments you thought may never happen.

Surgery Day

Ever since we have endured countless stressful appointments, MRI's with sedation, and surgeries, I have discovered a new type of nausea. I feel it in the pit of my stomach usually the night before. I sleep (restlessly), wake up with it, and then feel it escalate throughout the morning and into the procedure as I wait. I try to concentrate on other things, I take deep breaths, I pray, but it sort of lingers. After the procedure or appointment it finally rushes out of my system but then leaves an exhausting haze. Yes, "surgery day" is a long day! As ridiculous as it sounds, the person keeping me strong is my 20 month old, Carson. "Surgery day" seems like the sort of situation where the parent should be calming the child but this morning it was the other way around.
Carson was quite happy showing up at the hospital. He loved the various playrooms/waiting rooms with all the different toys. And he loved flirting with the nurses. Obviously, he didn't have a clue what was going on, but it kept me strong seeing him enjoying the morning. He has been through so much. I sometimes get emotional in the waiting rooms and in part it's because of the fear, but also because of all the past memories of similar situations which God has delivered us from. The endless waiting before the surgery gave me time to remember that God has always protected Carson and has strengthened us when we felt we were at our lowest low.
After the surgery, of course, Carson's good mood was long gone. He was very upset after waking up from the anesthesia. He sobbed angrily as bloody tears trickled from his eyes (quite a scary sight!). Seeing your child like this is a helpless feeling, but it was my turn to be the strong one.
It's 12 hours later and Carson is home and resting in his bed for the night. It was a long day, but he did great. Each time we endure a challenge like today, I feel stronger for the next.

"Before, and...."

Carson has been doing great lately! We recently finished another session at the Conductive Learning Center and it's amazing to watch his rapid progress in just a few short weeks. Throughout the session we continued to work with his walker (this has been the most challenging- Carson definitely has the ability to use it, but not the willpower. Why use this walker when I can crawl faster?!) He has also learned how to stand with his back against a wall and also palms against the wall when facing it. In other words, no supports to hold on to. He has also made unbelievable progress in cruising along furniture.

But the most amazing thing lately has been an answer to prayer. Several months ago one of Carson's biggest challenges was his lack of upper body strength which is unusual for Spina Bifida. Most kids with SB have pretty strong upper bodies and struggle with weakness on their lower halves. I suspected that the upper body weakness Carson was experiencing was due to his mild Cerebral Palsy. Anyway, I worried about his weakness and was afraid it would keep him from being able to support himself and that he wouldn't have the strength to be upright for a walking position. This was one of main prayer requests. When I meet with the conductors after his session they were very encouraged by the progress Carson made and said that his upper body weakness is no longer a main issue and that it shouldn't hold him back physically. Suddenly it was as if a weight was lifted from my shoulders. This is a big deal for us. Months ago I never imagined that he would be doing some of the things he is achieving now. God is good and is always blessing us. Carson has many challenges from his disability but it never keeps me from being thankful for all the abilities he does have. Carson is very blessed indeed.

Consider the photo a "before" picture. In a few days I will post an "after" hopefully showing straight eyes! Eye surgery is scheduled for this Thursday (Sept 30). Please pray for a successful surgery and peace of mind. As the date nears I grow more anxious. Although this is a small surgery it's still always hard. Carson does not do very well with sedation and it's tough to hand your child over to surgeons. Although I'm not eager for the procedure, I am eager for the results. Not only will his eyes straighten out, but he will also be able to develop bilateral vision.

19 months

It's a wonderful thing having family through the good and the bad. Sometimes I have to remind myself that I'm not as alone as I feel. My family loves Carson more then I ever thought possible. They suffer through the hard stuff that Spina Bifida brings, and they celebrate all the victories Carson achieves. When I feel overwhelmed my family pulls through for me. My sister-in-law, Cori, made this adorable video of Carson at the cottage. I showed it to him today and he loved it so much we had to watch it 5 times in a row :) When I aksed him, "where's Carson?" He pointed to the screen. He always loves to be the star!

Hope you enjoy it

Parks and Friends

If Carson could live at the park I'm pretty sure he would. He would sleep in the tunnels at night and then spend the day climbing the steps and going down the slide "Carson style"- headfirst, fearless. Lately we have been going to the park almost daily. Here's a photo of our recent play date with Carson's friends who have Spina Bifida. Pictured above is Emileigh, Greyson, Whitney, Carson, and Noah. I am so thankful for all the friends God has blessed Carson with. Not only does he have tons of friends in his age group, but a pretty good size group of kids with SB as well. It's amazing and inspiring seeing these kids progress. I just love them!


The highlight of the park is always snack time of course. Greyson is always willing to demonstrate his love for Carson :) Hugging, petting, and even sharing his pretzels.


Tunnel Hog


I have to admit, when we arrive at the park I always hope it's empty. It's tough watching all the other kids his age running circles around him. But then I continue to realize that Carson doesn't mind, he just enjoys himself because he is focusing on what matters: he CAN enjoy the playground. In fact, he is able to do everything he wants. At the playground he isn't limited at all he just gets around a little differently or might need some help here or there. I am so proud of my brave little guy!

17 months

It has been awhile since my last post! I am eager to share that our fundraiser last month was a big success! It was incredible to see all the support out there for Carson, Greyson, and others in West Michigan with SB. Thank you to everyone who came and contributed!
Not much is going on to update, but here's a few positive things that have been happening in our lives:

-We are attending a SB conference in Cincinnati! We're going with our friends, Leigh and Andy (Greyson's parents)
-Carson is starting to crawl with extended arms- his current record is 15 feet. We call it his "big boy crawl" and he is very excited to show it off!
-I joined the board for the West Michigan SB Assoc.
-Carson will be 18 months in July!
-Carson will have an eye corrective surgery at the end of the summer. This is a minor surgery with major results!
-Carson can cruise down furniture and chooses to travel this way even though it is slower than his crawling! (great choice, carson!)

Thanks for checking in on us!

Are you good at eating?

My relatives have always taken pride in our family's outstanding ability to eat. Not only do I have amazing cooks in my family, but also amazing eaters. In fact, one of my grandma's frequent questions includes, "Is he a good eater?" This questions applies to new cousin's boyfriends or new babies. Although my sweet tooth gets me in trouble from time to time (or like everyday) I have learned to appreciate and savor good food. Some may think it's ridiculous to have at least 3 different types of meat at a family holiday, or it may seem silly to some how my family loves to explain in great detail what they ordered at a restaurant the other night, but for my family it's a way that we appreciate the good stuff in life- or savoring the details.
So where am I going with all this? I know many others are blessed (or cursed) with the love for food. And if your looking to eat for a good cause than join us at Vitale's in Ada. It's easy- order food and a portion of your bill goes to our local Spina Bifida support group.
Throughout the past year of Carson's life I have had the privilege of meeting some pretty amazing moms who have dedicated every last ounce of energy to enriching their child's life who is challenged by spina bifida. I am so proud of all the hard work these family's endure. These women have inspired me in so many ways. They help keep me focused on what's important and keep me positive when times get tough. God has blessed me with an amazing community and I am so proud be a part of this group!
Please mark May 18 in your calanders and join us for a memorable night!

Our first family trip

Several weeks ago we returned from our first family trip. We spent 9 marvelous days in Naples, Florida! Packing for such a trip was a nightmare. Our baggage included carson's suitcase, our suitcase, a stroller, a car seat, a walker (one we received the day before our trip that I could not part with!), and one giant diaper bag. We were quite nervous about the flight not knowing how Carson would react to the pressure changes and the long day flying brings. To our surprise he did great! His ears never bothered him, and he loved being surrounded by new people on the planes. I was incredibly grateful not having to be the annoying family with the screaming baby (which, for the record, I do not view as annoying anymore, but instead just feelings of strong sympathy)!
We had a wonderful time in Florida escaping cold Michigan weather, doctors appointments, and other distractions. It was great just being with the family and enjoying ourselves.
Upon our return it was back to reality! The next day we started another intensive session at the Conductive Learning Center (2 hours every morning thru march). It has been going very well. We get lots of attention because there's only one other kid in the class; Greyson of course. It's fun to see the boys beginning to interact even if it is hair-pulling and toy-stealing :)

Haircut blues

Another milestone achieved recently: Carson's first haircut. Everyone seemed ready and eager for his new hair do except for Carson and I! I actually kind of liked how he had the funniest hair around. It kind of went with his personality somehow. I'm trying to get used to his new hair cut, and I have to admit that he looks adorable still, but part of me still misses his funny baby hair :)
Obviously as you can see, the haircut experience did not go well. Every tool was way too loud for Carson and loud + Carson= disaster! Even the toy dispenser at the end of the appointment was incredibly loud, poor guy!
Currently Carson's miserable state has continued as he fights off his first sickness. Last Monday he caught a stomach bug and by mid week we were all pretty sick. I think we're finally starting to see the end of it. At first it was pretty scary because when your child has SB and is vomiting you immediately start considering neurological causes or UTI's. Although it was pretty miserable having the whole family sick it did help reassure us that Carson was experiencing a "normal virus." So we are quite thankful!
Also important to note are some very special birthdays this weekend: Greyson Gibbs and the Baar twins! We are so thankful for our friends and their growing families and all the continued support!

neurologists and neurosurgeons

Lately it seems that the more doctor visits we have the more confusion we gain. It's funny because you'd think that more doctors= more clarity, but unfortunately the opposite is true in our case.
Carson's lack of upper body strength and his left-arm preference has been our latest mystery for the past several months. After his MRI we visited with Carson's neurosurgeon to discuss these symptoms. He felt that although Carson has a chairi, syrinx, and tethered cord, none of these issues should be causing the problems according to the MRI. The following day we met with our newest specialist, a neurologist. We were relieved to hear that he felt Carson had no additional neurological problems to diagnosis. Instead he disagreed with our neurosurgeon; he believes that Carson's issues are a result of the chiari, syrinx, and tethered cord.
We have decided to get another perspective on the matter from another neurosurgeon but who knows how far that will get us? Is this the beginning of going in circles?
Perhaps I should translate some of this; sometimes I forget that not everyone speaks "spina bifida" :) SB typically affects more than just your legs or your ability to walk. Because of the initial lesion in the spine it can affect multiple areas of your anatomy. The chiari (which controls your fine motor skills) is located at the back of your brain and is connected to your brain stem. Carson has a chiari II malformation which I believe is caused by the spinal cord "pulling" on it. The chiari can cause problems or become "symptomatic" when theres not enough room in the skull for it. A decompression surgery is performed when a neurosurgeon determines that it is symptomatic and is suffering from lack of space.
A syrinx is hydrocephalus(increased fluid) of the spine. Carson has a syrinx near his neck. His neurosurgeon will monitor the size of the syrinx by doing routine MRI's. If the syrinx grows it means another surgery. Typically either an operation directly on the syrinx or a shunt.
A tethered cord typicaly happens at the site of the initial lesion. It is the build up of scar tissue adhering to the spine. Among the symptoms are changes in the person's physical abilities. The solution is a surgery to release the tethering. Unfortunately this can become a "maintenance" thing because more surgery= more tethering which means more surgery and so on.
Obviously the decision to operate is not taken lightly. Since Carson is not experiencing symptoms that are putting his life in danger it may not mean that surgery is the right choice. Hopefully our next doctors visit will mean more clarity and above all more peace with the decisions we are faced with.
On a happier note, Carson transitioned himself from the floor into a sitting position for the first time several days ago! He is also enjoying some of the new things were learning at therapy. Lately he has learned to climb onto higher surfaces like a step, pillow, low toy, or a lazy grandpa laying on the ground :)He has become quite ambitious with this new skill. Sometimes I catch him trying to climb onto his floor heater which is about 18" off the ground. It's funny to see him eyeing objects determining if he can conquer them! I don't think I'll ever relate to the mothers who complain that they spend their days chasing their toddler around the house trying to keep them from climbing things and getting into stuff their not supposed to. I cannot wait to chase Carson!

Marathon Update!

Hello everyone,
I think it's about time for an update as we have a lot to share! We have completed our first session at the conductive learning center. The class lasted 3 weeks and went rather quickly. During the course of the class Carson improved in many areas. He gained alot more strength and although he doesn't sit completely steady he is getting closer. He also has gained speed with his crawling which is exciting to see. His biggest improvement in my opinion is his ability to stand with more confidence and his ability to steady his body against a surface using his arms and hands. Today I was reminded by this new milestone when I was preparing some food for him in the kitchen. Instead of laying him on the floor, I helped him into a standing position. As I prepared his lunch he stood holding onto a drawer for the entire time! Not only did he stand without falling, but he enjoyed it as well. We have worked incredibly hard for this blessing. It sure makes you thankful in a new way for these milestones!
I wish I had only positive updates, but unfortunately we were recently discouraged to learn that it was time to catheterize Carson. We were hoping that we wouldn't have to deal with this until a few years from now, but Carson's hydronephrosis (fluid in the kidneys) has gotten worse so we're hoping that cathing will help. It was overwhelming at first, but now it is part of our routine. The hardest part, in fact, is that Carson is always full of energy and cannot lay still during the cathing. This makes it tricky, but it is always fun to see his legs kicking! One of the risks with cathing is the possibility of UTI's and today, sadly, we learned that Carson has his first infection. Since we caught it early we're not anticipating fevers so please keep him in your prayers!
Friday we had another MRI. Somehow the hospital expects you to arrive 2 hours before the procedure to sit around with a hungry, crabby baby. Nate and I were dreading the day, but Carson did surprisingly well! I know alot of you were praying for him that morning, thank you! Since the MRI was 2 hours he had to be sedated. He was upset and out of sorts when he woke up, but he quickly recovered and was his normal self again in no time.
Today I received the tentative results. We're excited to report that there has been no change in his chiari, hydrocephalus and syrnix since his initial MRI in August! This is very good news. We'll talk more in depth about it with his neurosurgeon in a few weeks. I hope he is pleased with all he finds.
Lately I have felt some new anxiety over a new specialist we will soon be adding to Carson's list. Since Carson is not progressing well with his upper body strengthening we have decided that it is time to see a neurologist. Hopefully we'll get some answers as to why he is lacking strength. I am nervous and eager, please pray that we'll solve this mystery and overcome whatever the new challenge is!
And now for the biggest news: Carson turned 1 last week! I blinked and suddenly a year went by. The day was more emotional than I thought it would be. I cannot believe all that we have been through in a years time. We are so thankful for Carson and all that he is teaching us. And we are grateful to God because he has provided EVERYTHING we have needed. A year ago the thought of not only raising a baby, but a baby with special needs was stressful and overwhelming. I felt inadequate for the task (and still do!), but I am always reminded that God provides everything that we need (and in our case even more than what we need). He has given us the resources we need for Carson's medical issues, the finances we need to afford it all, the intellect to understand and react, and an awesome and supportive community filled with people who pray for us, encourage us, and even new friends who are going through the exact same thing.
Please continue to keep us in your prayers, we have been blessed by them.