Thursday, April 25, 2013

The Twisted Road to the Struggles Unseen

Oh hello, I do have a blog, don't I? Yes, I rarely keep it up and I rarely write on a regular basis; I know. Life gets in the way most times.

Really, I'm just writing to get it all out; out what's in my head (Thank you 4 Non Blondes; for that line). I've recently had a revelation and I'm just trying to digest it all. What is this latest of my many revelations? My youngest child is special needs.

How does a food allergic/asthmatic with eczema become special needs?  By having some of the most severe forms of each of those and throw in a case of Vocal Cord Dysfunction that is not near as controlled as we need to get it. (Read about VCD here.) The aforementioned diagnoses are the cake we call life; Liv's anxiety is the most delicious frosting on our cake. I will say, I have had a front row seat to see just how powerful the mind really is - since beginning counseling for anxiety, Liv has really made many strides in all aspects of her diagnoses and life in general. As I often say, food allergies are rarely as simple as what meets the eye.

Liv is what is known as a chronically ill child; her Dr informed me last year she should be part of the Starlight Child program. I looked into it, and that was about as far as I went. How could my child that is so rambunctious, joyful and full of LIFE, be special needs? How is it by the end of each school year, I look back and realize she's missed more than 30 days of school (with countless early dismissals due to falling ill or Dr appts)? It's no wonder we're all so exhausted and ready for summer; we've spent the better part of the years being behind and trying to get makeup work done and turned in (while keeping on top of current work). The thing is, Liv gets sick, she gets really sick and it happens often. To keep on top of her health, there is a ton of maintenance - at home and in clinic.

Now, more to the point of what I want to say. I'm not writing this out to complain, please don't misunderstand me on that. I'm writing this to remind folks that we all have battles that are unseen on the surface. I see jokes about food allergies or asthma, and I can laugh at them; I have a seriously wicked and twisted sense of humor. What I cannot listen to or tolerate is seeing my fellow mothers being judged and so harshly. I hear that mothers like my fellow asthma/allergy moms are "helicopter moms" and while I can see how somebody on the outside may think that; I highly doubt many of them would be able to trade lives too easily. I don't believe I'm any better than the next mother, but I do believe that given the choice - the mother or anybody judging my life wouldn't trade places for a moment.

There are days it's exhausting just to keep everybody fed and the dog walked, let alone get work done and an even smaller chance of free time (I'm stealing time that I should be using to walk the dog, he's lazy anyway ;) ). To know that so much energy goes into the lives of allergic children and to see my fellow moms struggle SO much to get schools to understand that our kids need certain accommodations makes me angry. To make schools understand that our rambunctious children could be taken from us due to one mistaken bite of allergic food (or even contact with it), is so difficult. Why? When I watched my child do a challenge to baked egg (which mutates the protein and dilutes it among many other ingredients), and go into anaphylaxis by her 3rd dose is heartbreaking. Those three doses didn't equal one full bite of a muffin and she went down fast. Within minutes she'd vomited twice, sneezed uncontrollably (more than 16 sneezes back to back), eyes were watering, coughing along with the sneezing and then it happened...her blood pressure plummeted. Her blood pressure plummeted after a dose of Epinepherine - Epi should cause the heart to race; Liv was in full anaphylaxis and the whole thing first to last symptom (before Epi began working) was within 7 minutes. Seven terrifying minutes that I could NOT imagine happening in a school that denied my child her rights to have a food free classroom and immediate access to her medication. Can you imagine that? Sadly, I'm seeing so many mother's go through this very ordeal with their schools and fellow parents...and today, I'm not sad, not complaining, not hopeless - I am strong, I am standing up and I am ANGRY.

I could go on and on, but lucky for you, the dog's walk time is ending and I must get myself to the school and meet with staff regarding the next school year, that should be fun, especially considering my mindset with schools right now (Liv's teacher being the extraordinary exception, I do have to say that...she's wonderful!). Before I go a shout out to the moms of the world. To the moms with struggles unseen on the surface or seen on the surface - hats off to you for all that you do.

1 comment:

  1. Oh, Billie, this was very well written. I loved it! I so agree- I hate seeing other asthma/allergy moms being judged, put down, and made to feel like they shouldn't protect or stand up for their children. When I went to get a 504 plan for my daughter with multiple food allergies, one school administrator suggested I homeschool her, and another asked why I wanted a 504 plan- just so I could sue if something went wrong?- which is not why I wanted one at all. I wonder where the compassion is for our children? I feel for everything your family has been through! And keep writing occasionally, please, it's great to read!