It Was an “I Dislike Spina Bifida” Day

I hesitate to say “hate” because I imagine there are days in our future much more frustrating than yesterday. So I’ll save that for a special occasion. But yesterday, we had a slight crash from the previous day’s mini-success and then had more fall out from our physical therapy appointment. I remember what someone said to me after Colten was born. The gist of it was this:

It will take a while for this to sink in. You know, parents with children that have Down Syndrome seem to grasp the concept of having a child with special needs faster than parents of children with Spina Bifida. I think it’s because it literally stares them in the face every day and there is no escaping it. With Spina Bifida, once you move past the initial surgeries, there’s this period of time, for some of the kids, that they have a pretty normal baby period. Then things start to take shape around a year and all of a sudden, reality sets in.

As I mentioned before, we’re starting to see bowel issues with Colten. Then on Sunday night, we added flax oil to his bottle and it produced amazing results Monday afternoon (I’ll let your imagination fill in the blanks here – or not!). We were ecstatic! Between the flax oil, prune juice ice cubes, and some other assistance from below (to put it nicely), Monday was uplifting in this area. We have been really struggling to keep things moving for Colten and to finally get some relief – for him especially, was incredible! So of course, we gave him more flax oil first thing Tuesday morning in his bottle and waited, anticipating a repeat performance. It didn’t happen. That was discouraging. We were so confident that the flax oil was the cause of the new results – it was the only thing we had changed. And to see it not have any impact at all the next day felt like our balloon got popped. And another bottle with flax oil today produced no extra outcome.

There aren’t any pictures to reflect the previous paragraph, but I think you’ll appreciate this one:
20130522-223531.jpg

Then Colten had his bi-weekly physical therapy appointment from EarlyOn Tuesday afternoon. He had a great appointment and April was impressed with the strength he is showing in his back, and his smarty-pants way of getting toys to himself (SEE VIDEO HERE). He still isn’t showing a strong “protective extension”, which is when a sitting child tips to the side and puts his arm out to help protect from crashing into the floor. He rolls over when he really wants or needs to, still struggling a little to get his arm out from under him and untangle his legs. He pushes up very well when on his belly and tolerates being there just fine. He sits up straight and tall and reaches for toys, and can even stay seated for a while when one leg is tucked in (this reduces his foundation and is a more unstable position, but will eventually allow him to sit “criss-cross-applesauce” – for the older generations, this is the more appropriate term used now for what you remember as “Indian style”). All was great with his PT appointment so far. Then, after some support in a crawling position that didn’t amount to much movement, she worked on getting him into a weight-bearing position – standing. That didn’t go so well. Most children will push through their legs from a few months old, when their feet touch a hard surface. Then around 6-9 months, they start to stand while being slightly supported or while holding onto something. Colten’s muscle development in his legs, or lack thereof, and his lack of sensation on his feet, make this task difficult. His right foot folds under him – I fear that if he does try to bear weight through that leg, his ankle will snap if he’s not flat on his foot. Even though he does “treadmill walking” on a regular basis, he’s not really walking – he sometimes lifts a leg and puts it in front of him (even more rarely taking weight on that leg), then the legs just drag back behind him.

This is how the right foot just folds under him – he has no control over it:
20130522-222949.jpg

His leg getting caught up under him after rolling himself onto his belly:
20130522-223052.jpg

So the PT mentions the words “standing parapodium” and “orthotics”. For some reason I felt like laughing when she said it. I still don’t know why! But it just sounds like a lot of contraptions for such a little man. So I jotted in my notes for his next clinic appointment at Mott to ask the Physical Medicine & Rehab specialist, Dr. Greene, about what steps we need to be looking at next. After the PT left, I re-read the session notes she left and had myself a little cry. This poor little boy is going to have to work so hard at these things we take for granted. I wish I could make it easier. I wish I could make it go away. I felt so bad that not only could my son not do what his body needed to do (back to the nether regions), he was going to have to struggle to get it to do what he wanted it to do (move). And I felt helpless, defeated, angry that my body caused this in him, sad, and just not ready to deal with all this equipment stuff. When Richard got home that evening, I shared the frustrations with him and we both had a little pity party.

But it’s hard to have a pity party. Some days you want to scream, cry, kick and wake up from a bad dream. Other days you feel like it’s just how it is and this is the new normal and this is ok. But even when we have a little pity party, I feel guilty. There are so many – SO many children out there with medical, emotional, physical or cognitive issues that far exceed what Colten will hopefully ever deal with. How can I feel sorry for us, or for Colten? Really, when looking at the many complications that some kids have, we are lucky. We are lucky he was born full-term. Lucky he’s so happy. Lucky he’s otherwise healthy. Lucky we have family and friends that are interested in learning about his needs and how to help support him. Lucky we have two other boys that adore their little brother. So we push the pity party aside and try to look on the bright side (go ahead, sing the song now). But you know, sometimes we just really dislike Spina Bifida. Good thing we LOVE this kid…

20130522-223243.jpg

Advertisements

6 thoughts on “It Was an “I Dislike Spina Bifida” Day

  1. Dear Kate,

    One of my neighbors and friends, Sr. Lenora Benda CSJ, who watches my cat Tuffy when I am out of town, frequently comments on what a fine writer you are—and you most definitely are! Even when you’re explaining complex medical terms, procedures, etc. or when you decide to delve into the more scatological side of Colten’s medical situation, you have a lilt, a bite, and a sharp personal edge that helps to put it all in perspective.

    Is Colten’s constipation a side effect of Spina Bifada? Is this because there is nerve and muscle damage to the bowel, spinchter, etc.?

    I’m sorry that Colten—and by extension you and Richard—have to contend with these disappointments. I was thinking while you were describing his various body motions of how remarkable the human organism is. How does it know or how does it learn to find the path to sitting up, rolling over, crawling, standing up, and all the other primary movements that any person has to learn in order to get ahead in the process of development. Parents, older siblings—and in someone like Colten—therapists and doctors can assist with some of this, but mostly each child learns these things on his/her own. Incredible. Somewhere in our DNA and in that fascinating, highly complex organ, the brain, there are messages alerting the person to do this, try that, and keep going.

    Colten has made amazing progress in some areas as your posts have recorded. Without being a rosy-eyed optimist, I think we do know that surprising, even nearly miraculous things occur. I wish I could wave away the disappointments and tears that you and Richard sometimes experience and the frustrations and defeats that this little guy has to contend with, but I can’t. You all are in my daily prayer however that you will continue to face all this with the resolute wisdom, humor, and grace that you’ve displayed thus far. With all love and admiration for you all!

    gordon

    • Uncle Gordon,
      Yes, the bowel issues are related to Spina Bifida – or a result of it really. Bowel, bladder & sexual function nerves are at the very bottom of the spine so it is almost a guarantee that every person with SB will have issues in those areas. They maybe cannot control the flow of urine or stools. The bladder may not empty all the way, which causes a host of issues. They often have kidney reflux. They often have low or no tone in the rectum and so cannot push out waste – requiring help from various treatments. This kind of explains a lot but there is so much more. I will try to put together a post about this further.
      In the meantime I will share this image again as It outlines the level of SB and the function level most likely (although its not cut & dry, there is often scattered nerve damage and/or healthy nerves. Everything below the point of defect is mostly non-functional. Colten is somewhere around L3/L4:
      http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8290049/

      • Dear Kate,

        That is so much to deal with. For you and Richard during Colten’s childhood and for Colten all his life. So challenging! While it’s true that others have even greater challenges, it doesn’t take away the pain, frustration, or suffering for the one who has less medical challenges. Pain or suffering is like gas, no matter how little or how much is released into a clean environment, it completely and evenly distributes itself throughout the whole area. When a person suffers, whether slightly or greatly, s/he feels it entirely, i.e., physically through this wonderful complexity of nerves as well as psychologically and spiritually. I would never tell anyone who is suffering, “Well, ti could be worse.” Sure it could be worse but how bad does it have to get for the non-sufferer to understand that those are not comforting words to offer.

        You folks are just terrific. Colten is so blessed to have been given such insightful, caring, and resolute parents and two such wonderful older brothers not to mention great grandparents, aunts, uncles, and relatives.

        gordon

  2. He is so adorable!! We found that a daily dose of George’s Aloe Vera juice works great for keeping the girls “regular”. We also do a high-quality probiotic (HLC high potency powder), and we can never skip a day, or we go back to square one. it’s not fun, but it works!!! The equipment seems overwhellming at first, but when you see him standing tall for the first time, proud as can be, it won’t feel so bad anymore. Then, one day, you’ll realize that when you look at him, you don’t see the equipment at all. It does get better, I promise :). It’s ok to have those I dislike spina bifida days, though. We have them over here sometimes too!

  3. …your Uncle Gordon is right…and he hit the nail on the head over and over again. There are ‘others’ who ‘have it worse’ but this does not diminish what your family is going through. Spina Bifida issues are ‘not old hat’ to you. This is still a new thing, its still something you’re learning about. How can you NOT have times of feeling overwhelmed, sad, angry, bitter and more? How can you not have times of excitement, joy, happiness, thrills and laughter as you watch Colten grow and change and learn? You have all of these emotions and they’re all part of your new normal. I say, if you and Richard feel a pity party forming, then have the party, clean up after the party, and continue on with life. Afterall, when you have joyful parties, don’t we clean up after those too and continue on with life? Let your emotions happen when they need to. It’s healthy to let out the bad and the good. The tears that are produced during sad and angry times are different than the tears of joy. Let them out, it helps cleanse the system. I know that as you go through all of this, Colten will give you more and more reasons to celebrate. I believe the tears and sadness will be less and less to be replaced with Colten being an amazing little boy, to an even more amazing ‘big boy’ to an even more amazing young man and then an awesome adult! How can he not – with the parents and the big brothers he has to help him along, on his life’s journey? It’s ok to cry, it’s ok to laugh-all in the same breath!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s