Awareness

 

Yeah, I’ve been a blog slacker. I admit it. It’s been almost five months since my last post, but I do promise there will be another post to follow this one shortly. I had the best of intentions to do a lot of blogging during the month of October in recognition of spina bifida awareness month, but that was before I saw ‘it’. You know, one of those stupid advertisements that shows up on your Facebook news feed as your Facebook creeping, I mean scrolling, through what all of your friends are posting. What was ‘it’ you may be wondering? Well ‘it’ was a post recognizing October as eczema awareness month.

I mean no offense to anyone suffering from the debilitating effects of eczema, but really? There is an awareness month for eczema? That Facebook post ruined the awareness month for me. No, not because it was eczema, but because we have truly overused the ‘awareness month’, the ‘National Day of…’, etc., etc. To me, it all feels artificial, fake, and insincere. Shouldn’t we all just be aware of our neighbors? Shouldn’t we recognize the good and positives around us, appreciate our good health, show kindness and compassion to the people we encounter in our day-to-day interactions who are going through tough times? Or do we need to have special days, months, or weeks to force us to think about someone other than ourselves? Do we really need national nacho day as a reason to eat nachos? It is all somewhat silly if you ask me.

Don’t get me wrong. I do feel there is some good that comes out of these awareness months. The most recognized and noted awareness month is breast cancer awareness in October. The most raw, real, and truly humbling message I have ever seen from one of these awareness posts was a picture of a woman with breast cancer who had a mastectomy. And she spoke honestly about how wearing pink, the save the tatas slogan, the NFL players wearing pink gloves, etc. really didn’t mean anything to her distorted body, the fears she has for her future, and the physical pain she experiences after every chemotherapy treatment. So if these awareness months start conversations, real honest conversations, and give people comfort and insight then I guess I am okay with it in that regard.

I will get off of my soap box now. I am choosing today to share a piece of our life with you, via this blog post, of what spina bifida looks like in our home along with a few stats about spina bifida.

We attend many appointments. Many, many appointments. Follow-ups with specialists, the standard well child visits, physical therapy, the early intervention team, you get the point. It can be overwhelming at times, but I am happy that we have all of these resources and amazing specialists at our doorstep. I am thankful that Colette is showing enough promise that pursuing some of these therapies are worth it.

Kids are resilient. Kids with spina bifida are resilient times a thousand. Does Colette have some challenges? Absolutely, but she does not let that stop her from accomplishing what she wants. I used to be diligent and very aware of what developmental milestones Cade and Cambrie were supposed to be reaching as infants and toddlers. It has been an adjustment with Colette. She is delayed with reaching some of her milestones, but that is okay. She has exceeded so many expectations already. What she has been through in her seven, almost eight, months here on Earth is overwhelming. Many parents of spina bifida kids call them their ‘warriors’, and I totally get it.

Colette is pure joy and happiness. She is the happiest, smiliest, and most chill baby I have been around. She has the best demeanor. Her smile is infectious, and we are all obsessed with her (if you could not tell)! Her big brother and sister adore her and the fact that she has spina bifida does not change their love for her and their need to invade her personal space all.the.time.

 

Two-thirds of babies diagnosed with spina bifida are aborted. I try not to judge others and their decisions. However, this is one of the dark statistics tied to spina bifida. Many parents are given outdated and inaccurate information about spina bifida. Though there is no cure, there are so many options for treatment, independence and opportunities to live a full life for people with all forms of disabilities and differences now. I thank God every day for blessing us with Colette. She is perfect and was just what we needed in our lives.

Shunts, orthotics, wheel chairs, oh my! Sure, I had heard of these all before and ignorantly thought, “Well, that is something I will never have to ‘deal’ with.” This one’s the worse. Many times I said or thought, “I am not strong enough to have a child with a disability.” I was wrong. I try and often fail to approach all of these challenges and feelings with grace. But, I am strong enough to have a child with a disability. However, I try not to focus on spina bifida as a disability. I look at Colette’s spina bifida as a hurdle. We are all running a race in life. None of us will have an easy race with no struggles, hurdles, or big hills that we have to get through. Spina bifida will not define my race or Colette’s. It is just a part of our course, a little bump in the road. Even if we fall from time to time or struggle to get up, we will. We will get up and keep going because life is too beautiful of a race to get stuck on one hiccup in the road.

 

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1 Comment

  1. She is so adorable! …and she was born into the perfect family! Thank you for sharing your experiences and feelings on your blog. You and your family are awesome Lynne! Have a wonderful Thanksgiving!

    Like

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