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 :)