Number 2

As you can see the title of this entry is called, "Number 2;" a significant number in our household these days for several reasons. First of all, Carson turned 2 years old on Jan. 6th! To celebrate we had our immediate families over (a very large group of 14) for one of Carson's favorite meals, lasagna. We have come to realize especially with all the holiday parties lately, that Carson LOVES parties. He is energized by groups of people and loves to charm anyone who looks his way. His birthday party was no different, he was with his favorite people eating his favorite meal and enjoyed it thoroughly! I was caught off guard by how emotional his birthday was for me. It's strange seeing your baby grow into an actual child with a personality! I found myself wondering where 2 years went? The memories from Carson's birth came rushing back, the NICU, the anxiety, the fear, but also all the milestones and achievements Carson has made. While looking back I have realized that I can look forward with hope.

Number 2, Part 2:

Admittedly, sometimes it irritates me when parents complain about potty-training and things like that. I try not to let it annoy me, but it's just one of those things. I think it would be amazing to have the consolation that although potty-training is hard it will work. The child will achieve it and it will be fine. (sorry to be harsh) With spina bifida you certainly do not have this assurance. You try to potty-train without really knowing what can be achieved. You practice walking without really knowing if your child will ever be able to take steps without your help, the list goes on. Well, tonight we had a break through with the potty! Ever since Carson was 10 months old he has been sitting on the potty. I know this sounds silly, but it's part of what he does while attending the Conductive Learning Center. It's hard to know exactly what this has helped and in what way, but it definitely raises the child's awareness of this activity. So for 14 months now Carson has been sitting on the potty doing breathing exercises and other things that we make enjoyable. Sometimes he would go sometimes not, I never knew what we were going to get. But we always tried to bring his attention to what we were doing and we always celebrated whenever he produced something in the potty. Tonight for the first time as I was reading Carson a book he pointed between his legs and said, "poo poo." So we went upstairs to sit on his potty and minutes later there it was! What a break through for us. It is an amazing sense of accomplishment when your 2 year old child with spina bifida tells you that he has to go number 2! (It's also pretty amazing that I can devote a blog entry to poo and be excited about it, but hey, it's progress!)

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