Balance, harmony and motherly guilt

As I go through the journey of trying to heal my son I often wonder....."Am I doing this more for me or more for him? Will he feel like I am always trying to fix him instead of just loving him the way he is? Everyone says 'He doesn't know any different because he has always been this way'. I disagree, am I wrong to disagree?" It's funny how no matter how I approach dealing with his spina bifida I am always left with guilt one way or another. If I am doing all the doctors say, if I am ignoring some of what the doctors say, if I am following my mommy gut, if I am just loving him for who he is and not trying to heal the SB, if I am trying to heal the spina bifida or even a combination of it all. It seems I always feel like I am falling short somewhere or like I am messing him up (emotionally) in some way.

Many people have tried to comfort me over the years about him having spina bifida. One of the comments I get most often is that "He can still play wheelchair basketball". That's a great sport, that I hear many mothers rave about how much it has helped their child gain confidence. I am not dissing the sport at all BUT as a mother wouldn't you rather your son be able to run down the street and play basketball at the closest park? He wouldn't need a special chair, or a group of other kids with special chairs, he wouldn't need you to drive him an hour or so away, he could just have the freedom to go to the neighborhood park. It's hard having a child with special needs. I never truly understood the term special needs until I had a child of my own with special needs. They really do need extra care and have special considerations to take into place. We are going camping the end of June and packing for my 3 girls is so much easier than packing for my son. Isn't it supposed to be the opposite? :)

I work hard to try to find a balance for him and for I. A balance between trying everything we can to give him the best life possible (which to me means using alternative medicine when appropriate) and still letting him have a childhood. I am fortunate enough to live in an area where alternative medicine is rampant and widely accepted. This also means that I often have people coming to me telling me how this doctor or that remedy would help my son. I have no doubt that many things could help him in one degree or another but our schedule, my paycheck, his body and his patience can only handle so much. I am grateful for all the options out there but it does make me really have to pick and choose what we put into our lives and has me researching a ton. Sometimes it gets exhausting. I wonder if I am insane for thinking I can be successful in getting him out of diapers. I worry that I'm trying to hard and that it's a hopeless cause and I will look back with regrets for time lost and energy wasted. I also worry about the flip side of things. I worry I will think I didn't try hard enough, that I should have done more, that money shouldn't have been an issue, etc.

Sometimes support groups are great for these types of emotions. Other times they cause more of them. This journey though similar is still so very, very private and personal. So I challenge myself and I ask you parents of children with or without special needs, be kind. Trust that the parents whose parenting style you disagree with love their child just as much as you love your child and they are doing what they think is best for their child. Probably constantly reevaluating every choice and every move. We all have our limits financially, educationally, emotionally, physically and support wise. What one person can easily do with their resources could be an impossible feat for another with their set of resources. Even if it's something as simple (yet complex) as a certain mindset or a lack of education. We all have our blinders and are often unaware that we have them.

I love to write and I love to document my story but with each post that goes out there a little bit more of my heart and my experiences go out with it as well. That's a big thing for someone to trust you with. Cherish their experience, whether you agree or disagree with someone you are learning a little bit more about yourself each and every time. Be thankful for another view and something to either solidify your current belief or to make you question and look beyond what you are currently seeing.

The best of luck to you on your journey whatever it may be!!!

“Be kind, for everyone you meet is fighting a hard battle"
-Ian Mclaren

Progress 6-8 years

6-8 years:

Carl James was homeschooled all through 1st grade up until the last 5 weeks when I started to feel like I was going to put him into public school in 2nd grade. So I put him in school in order to get an IEP in place and to help him adjust to the public school setting. So at 6 years old we started catheterizing (for social reasons). After a month or two in second grade he learned  to catheterize himself and to change his own diapers, boy did that change my life and his confidence! We were pretty successful at him being mostly dry in between catheterizations but he would still dribble a little. The urologists recommended that he be on bladder medication but I didn't feel right about this and so we continued to catheterize and have him in diapers. I have an overactive bladder and I noticed that rubbing cypress on my stomach over my bladder seemed to significantly calm down my bladder spasms. So I have started putting cypress on his tummy in hopes that this will help his bladder as well.

He is such a goofy little boy.

 

It was this year that we had to make the hard choice of amputating his toe. The doctors had been threatening it since he was 2 years old and since the wound was so deep they worried about bone infection but we were very diligent about applying tea tree every day to keep it clean and it looked so healthy they felt it safe to continue with monitoring it and bandaging it but after 4 years of bandaging and putting herbs and oils on that toe every morning (not to mention having to avoid pools) we started to notice that we had to put herbs on more and more often. It got to the point where we were putting herbs on every hour and we knew that we were only prolonging the inevitable. I decided to stop putting herbs and oils on and see what happened. Two days later this is what his toe looked like....

 

We took him into the ER for an emergency surgery. We felt somewhat relieved at the idea of being done with this constant pressure sore. Here is what it looked like after amputation. Sadly over time his next toe in line started to rip the exact same way the first one did. So we are back to square one. I can say though that I am grateful that with the use of oils and herbs we were able to prolong the life of his toe 4 years. Not something modern medicine was looking too hopeful on. We have learned a lot since then though and we are able to keep his wound closed with much more success. If it does open it doesn't go very deep. Medihoney and Dr. Christopher's complete tissue and bone are a huge help as they are just the right consistency and wet enough but not too wet. I think as I massage his legs and put cypress and marjoram on them it helps his body heal his wounds better as well.


When Carl James was 7 years old he had to have another shunt revision (around his 7th revision and his 11th surgery, I'm losing count). This time was different because his left ventricle was enlarged but his right was collapsed. The doctors told us that they needed to move the shunt to the other side because his right side was getting worn out. It was a lot for me to hear. That meant twice as any incisions and cutting through his skull. I was anxious throughout the entire surgery. Normally he bounces right back after surgery joking around the first hour or two, eating in the next few and then back to his normal self the next day but this time he took a lot longer to recover. For two days he rested and when he walked he would hold onto things to balance (more than his normal). Emotionally it was one of the hardest surgeries for us to endure. He was in a lot more pain before surgery than normal, he was more vocal and his BP was really high. It probably doesn't help that I was pregnant during this surgery and my emotions were a little off kilter.

We went back a few weeks after surgery for a scan. Something felt off because the doctor had ordered a rapid MRI and they had never done that before. After the MRI the doctor informed us that he has a cyst on his brain inside his left ventricle. He said he wanted us to come back in 3 months to see how it is doing and that is where we are now. Waiting to get an appointment. I have started to apply Juniper Berry (as it is a diuretic) on the back of his neck in hopes that this will help his body absorb the fluid from the cyst. I will keep you posted on how this goes! If the cyst enlarges or becomes problematic (he develops symptoms) they will try to drain it through surgery using tubing but they may have to put in another shunt. Something I would REALLY like to avoid. So as I try to treat this with essential oils I feel like I am shooting in the dark but I have to at least try.

Between 6 and 7 years old Carl James started to gain weight more rapidly. He continued to gain weight despite us trying diligently to increase his fluid intake and increase his vegetable and fruit intake. We have tried to keep him active but as he gains weight it gets harder and harder for him to play and run like he used to. We are hoping that our efforts of going on family walks and eating better will help but realize that we probably need more than this. So we have started giving him Slim and Sassy 3 drops in a capsule 3x a day. We have only been doing this for about two weeks. We continue to work with his constipation using the cone enema as well as herbal laxatives (cascara sagrada) and oils rubbed on his tummy to help with digestion (dill). I am hopeful that we will soon see results from this regimen.



Progress 3-6 Years

3 to 6 years:

I'm talking about his medical issues at the moment but it's important to remember he is still a person. He was and is the funniest, happiest boy with the brightest blue eyes!

 It was at this point that things started to get a little easier. Doctor appointments weren't piling up as much and we were starting to understand more fully what his needs would be. It was also at this point that I started to realize  and cope with the fact that my child really is different, he really does have special needs and he is behind other kids his age. He was not a baby crawling around on the floor anymore, but he was a toddler crawling on the floor and that's not normal. Around 3.5 years old he went through a really combative and defiant stage. It seemed normal developmentally but not normal for his personality. Looking back I think he must have started to have some frustrations about how his 18 month old twin sisters could get around better than him. He was starting to realize he was different as well.

One time when he was around 3 or 4 I let him sleep in his braces. We had been gone all day and we were exhausted. Between being pregnant and exhausted from a long day and getting him and the twins in bed I must have just forgotten. When he woke up the next morning I took his socks off and this is what happened.....

Several layers of skin came off with his sock leaving the imprint of the lines in his sock. I was mortified and felt like an awful mother. It was yet another sign about how sensitive his skin is. You can bet I have never left him in braces overnight again!!

At 4 years old he still had that pressure sore under his toe and it had now been two years of bandaging that toe every single morning, first thing in the morning. We kept this wound clean from infection by diluting and applying tea tree oil to it as well as galbanum.









This was the year he had his first surgery for his club foot. They told us he would have to be in a cast for several weeks and told us that he needed to be non weight bearing for X amount of time. I was like "Yeah right! you keep an active 4 year old off of his feet after surgery when he can't feel his foot (any pain)!" I of course did my best to keep him busy with sitting activities but it was another testament to me that pain can be a good thing! This is a picture of the wound after several weeks of casting.

 

The summer of when he was 3 years old he had 3 shunt revisions, 3 in one summer! Up to this point he still wasn't catheterizing and was able to empty his bladder on his own. Constipation was becoming more and more of a battle and he seemed to need more and more laxative. He would get so backed up that when his bowels finally got moving he would cry and scream for several hours of the night when he finally got to the point of the diarrhea pushing through. It was awful!!

 

On to the exciting news....somewhere around 4  years old he learned to jump off of something and actually land it instead of  his knees buckling. Here is a video demonstrating what I mean.... 

 

At 5 years old he started kindergarten

He is so social and he was so excited to meet new friends. He had already been to preschool offered by the public school system so he was used to being away from me for a short while, riding the bus and having other people change his diaper. It was at this point that the doctors really started to push wanting us to start catheterizing him (for social reasons). I was uncomfortable with this idea as it could cause scar tissue and cause him to have UTI's, something he had never had before but many kids with SB struggle with. We sent him to school with his walker, diapers and extra clothes and the school was very accommodating. Overall the year from 5 to 6 were pretty slow and uneventful medically (thank goodness)! He did have a shunt revision which he seemed to keep having around every 9 months from the time he was two years old but no other major surgeries or injuries, yahoo! This was also the year that I decided to start homeschooling him which you can read about here. So it was kind of a relief that things were a little more calm medically cause I was freaking out inside about how to be successful homeschooling.

 

One of the most exciting things that year was that he learned to do a front flip on the trampoline...

 

 

 



Past Progress 0-3 years

Spina bifida details: 

Birth to 1 year:

We found out he had spina bifida when I was 19 weeks pregnant. I was induced at 39 weeks so that all the doctors would be there when he was born. He was born vaginally, we did not participate in the MOMs study as it was fairly new and we were very anxious at the thought of it. His lesion is L4.  His spina was closed the morning after his birth and because they had so little skin to work with they brought in a plastic surgeon. I believe this is a huge reason his scar looks so neat and clean. He was born with his left foot clubbed

 and had a series of casts on for the first 9 months of his life. After that he had to wear special shoes all day (picture below)

and then only at night until he was 2 to keep his club foot in the right position.  He was able to empty his bladder on his own and so he did not need to catheterize. He did not start getting constipated until we introduced formula when he was around 8 months old. We started with adding prunes and prune juice to his diet but it got so bad that he would have had to eat a diet full of prunes just to have a BM. That's when we started on miralax and had lots of diarrhea and never formed stools.

He had his shunt placed when he was 3 weeks old and didn't need his first revision until he was 2 years old, we were told we were so lucky, we didn't feel that way.  Here he is in the hospital....


At birth and for 9 months after he had no feeling beneath his knees. Once we started introducing some essential oils he slowly got feeling down his right leg, then in his foot, then his tiny toes started to wiggle (it was such a slight movement that we thought we were imagining it), over time he was actually able to bend at the ankle, that movement started out slow and gradually became bigger and bigger. His left leg stayed completely numb. In fact he broke his leg when he was just a few month old and besides the swelling we had no idea because he never cried. When we were finally able to get him in to the doctor (it was a holiday weekend) they informed us that he had fractured his leg and it was healed! We couldn't believe our baby had a fractured leg and we had no idea, we thought maybe it was a skin problem. During this phase of his life there were lots of doctor appointments and lots of occupational and physical therapy appointments. To get him to roll over, sit up unassisted, to tuck his butt in when he was standing and holding onto the coffee table (we had to work to strengthen his glutes and quads), and stand up on his own. He was around a year when we got him his first pair of AFOs.  Here is a video of my husband teaching him to stand the way that the Physical Therapist told us to teach him....

1-3 years: Carl James took his first few steps when he was 15 months old. They were possibly the sloppiest steps in the world but we were ecstatic! We were fortunate enough to catch it on tape. Unfortunately it was on my phone before smart phones came out, so it's a little grainy.

We slowly watched Carl James' walking improve. When he was around 2 years old we noticed he had a pressure sore under his pinky toe. It took time to learn that it was created from the way he walks and creates pressure on his pinky toe basically ripping the underside open. We worked diligently to bandage his toe first thing in the morning and put his shoes on as soon as he got out of bed. Nothing the wound care team told me to do worked. We eventually stopped going and treated his toe with oils (geranium, yarrow, and galabanum alternating) and herbs. Even 10 minutes with shoes off would tear that toe right back open and we would be back to square one. Extended time in the bath would emaciate the toe and we had to avoid pools while his toe was healing. It was somewhere during this time that we noticed his legs weren't turning purple anymore when I would hold him on my hip and they weren't red and splotchy. It wasn't until later (when I stopped and the red and splotchy look came back) that I realized it was the marjoram and cypress that I was rubbing on his legs when I massaged them. This was also when we noticed he was  starting to feel a tiny bit below his left knee, which I attribute to using Helichrysum and Frankincense oil. We continued to do our own little experiments to see what he could feel whether it be pressure, temperature or a sharp poke. He still lacked most feeling in his lower left leg but we could see there had been some changes right below the knee as far as sensation was concerned. Here is a short clip of him walking around 2 years old.