Cub Scout Camp and Confidence

To only focus on my son's physical healing and to ignore his much needed emotional or spiritual healing would be a mistake. It would also be a mistake to not document some of this as well. I firmly believe in the power and confidence we are able to feel as we conquer our physical body and as we learn to use it to it's best ability. It's one of the many reasons parents put their kids in dance, gymnastics or on sports teams. It's also something that my son struggles with on a daily basis. He watches his sisters conquer climbing trees, playing on my aerial silks and running really fast. He rarely gets the chance to feel this same kind of success and the "I did it feeling." Yesterday he was able to have positive experience. That I wrote about on one of my other blogs. Here it is....

I write from a place today of awe and gratitude. There are so many times that we see the weaknesses or the evils of mankind. When you turn on the news or the radio, as you drive down the freeway encountering people with road rage, when we have our quarrels with family, friends, neighbors or coworkers the flaws of mankind become more and more evident. Today though I witnessed the opposite. Today I saw the strength of mankind through strangers compassion and consideration. It reminded me how much the small things we do really do matter. Today was cub scout camp day. I had hoped my husband could take my son so that they could have some father bonding time and I knew my son would enjoy it more with his dad rather than his mom. When I found out that my husband would not be able to get work off, I cried.

If he weren't disabled he could have joined the scouting group on his own without either parent but I knew he would need lots of one on one attention and would need help with toileting needs. Sometimes the hardest thing about having a child that is disabled is the day to day heartaches rather than the surgeries. Since my husband wouldn't be able to get off work it meant that I would need to get a babysitter for my 3 younger girls and impose on someone else's day. It also meant that I would be out in the heat at 7 months pregnant helping my son stay balanced, climb things and shoot the bow and arrow while stabilizing him in a standing position. I was really worried about this since I have been very fatigued lately from the pregnancy. I wasn't sure that I could take him or that either of us would have a good time. I wasn't sure how far the distance would be from one activity to the next since I had never been up to the camp. I decided late the night before though that I would take him.

My sister was very generous and even though it was last minute she said she would watch my 3 girls. I knew with my girls there I wouldn't worry and I would be able to concentrate on Carl James. So we all got ready for the day and headed up to my sisters and then camp. I got to camp much later than expected and was worried about what he had missed. The camp staff were very helpful in helping us find our group and even gave him and I a ride up the hill to where our group was. It turned out that we had only missed archery and the "leave no trace" activity. Soon after we arrived they were ready to move on to the next station which was the hike. The camp leader that was up in charge of the hike was very on the ball and noticed his crutches so she gave him the option to go try out archery instead of the hike since the hike was a steep hike. With a little coercion from me he decided to do archery.

Once again they gave us a ride down the hill and to the archery station.

After the archery he said "I was nervous cause I thought they were real bow and arrows but now I am glad that I decided to go here instead." After archery we went on a canoe ride where he got to have his own paddle which he thought was pretty cool. While there on the canoe ride I could hear him laughing at the funny things the other boys would say and do and so I knew he was getting more comfortable and enjoying himself. He always takes a minute to warm up to a group and so it was nice to see that this process was starting even though it was only his second activity with his scout group.

 

One of my favorite parts of the day was seeing how he reacted to the rope bridge. I had been asking him if he was going to try it and his first reaction was a straight up "No." So I decided to let him fall back in line and just watch the other boys. We continue to talk about it and his answer slowly softened from a straight up "no" to "I want to try it but I don't want to try it." Eventually his answer was "I want to do it so I can send dad a video but I kinda don't want to do it."

As the boys took their turns I watched his facial expressions and I could see that he was not only warming up to the idea but working up the courage. The time finally came for his turn and it was wonderful! He did an amazing job and at the end was as proud as could be! The look on his face was priceless! Later in the obstacle course there was a beam that the boys were to balance on. He absolutely loved conquering that! We actually had to go back through the obstacle course to get a video for his dad. :)

 

At the end of the day I was filled with joy and gratitude. I ached for him to have the experience that I knew this could be for him. For him to enjoy the company of the other scouts and the leaders and for him to be able to feel confident and accomplished as he completed each task. I knew how life changing an experience this could be for him and I also knew it could go south really fast. I had prayed that he could have the experience I hoped he could. I was irritated when I got to camp much later than expected but as the day unfolded I know the Lord was looking out for us and had an interest in our day and how our day went. He answered my prayer and helped us arrive at just the right time and had just the right people there to help this be a great experience. I am so grateful to everyone that took the time and noticed his special needs. As small or big as their accommodations were. It made all the difference.




The miracle of probiotics

Anyone that has a child with Spina Bifida will probably tell you that the chronic constipation and the diapering/toileting needs is the hardest part, or at least comes in as a close second. That's how it is for me at least. Even compared to the surgeries, hospital stays and the casting. It's always the little daily things that add up to bother us isn't it? It's the same thing here. My son has been on laxative since he was 8 months old. The older he got the more he seemed to need. We tried many forms of laxative to try and get a good bowel form and consistency and to keep him regular. Each seemed to have failed in one way or another. Miralax was always able to get him going but it always turned into diarrhea, we would back off a bit and then he would be constipated. Fen cho worked for a minute but then it wouldn't anymore. Chiroklenz worked great for a long time but his body seemed to adapt and it stopped working. Senna has never worked for him.

Right now his current laxative is an herb called Cascara Sagrada. It works wonders! The consistency is great and the frequency is much better than it has been in the past but what has really helped is putting him on probiotics. I have been told for years that I should put him on probiotics. My aunt told me when he was a young toddler, my mother reminded me through the passing years and once in a while I would hear a mother of a child with spina bifida rave about how much it helps. So why it has taken me so long is beyond me. I guess I felt like such a simple thing couldn't really help so much. I guess I felt that if none of the laxatives were helping why would probiotics help so much. I think part of me was afraid to try it and have yet another thing or idea fail me. I am so glad we are trying it now.

I went to the health food store, and picked out a probiotic with multiple strains.

I love both of these products. Especially the PB assist cause it does not need to be refrigerated 

I started him on a pill a day for about a week or two. I didn't notice any difference. So I decided since he has been so constipated for so long he might need a higher dose. I started giving him 1 pill 3x a day. It took about a week or so but I started to notice a difference. He was able to have a bowel movement even without the cone enema! We went on a camping trip and I packed all of his pills. I didn't give them to him even once. I totally forgot. So he went 5 days without laxative. We got home and I started him on laxative and probiotics and he was able to have a bowel movement the next day. That is unheard of for us! Normally a day without laxative would constipate him for 3 days to a week. This was 5 days without laxative and it didn't slow him down at all!

I am so grateful to the people who shared their experience with me and the people who kept reminding me to try probiotics for him!