The Bad, The Good & The Thought Vomit? Ew...

Just a late night rant/vent/thought vomit (you're welcome for the visual).

I wonder how many other parents of chronically ill children find themselves with a very limited number of friends; if any at all (Specifically those working with hidden disabilities; FA parents, Eczema parents, Asthma parents, Autism Parents, so on and so forth).  I mean, it's hard to have a social or work life when more often that not, you need to cancel plans with little to no notice. Making play dates with an FA child is one of those things that I'm always torn about; do I ask the other parent(s) to accommodate my child regardless of how difficult that may be for them or do I beg them to make a 'food-centric' time well...sans food? Going back to canceled plans, how do you tell a friend, co-worker, boss, teacher, family member or really anybody that you have to cancel plans because your child is having an eczema flare? Come on, I'm part of the real world and I try to keep things real - who would believe that eczema could interrupt every aspect of life (outside of other eczema parents, of course)?! How numb can a person become to the look that a person gives you saying, "uh, yeah, eczema...sure," or the tone and change of voice you hear when they say, "Oh, poor child...," but it really sounds more like, "Hrmm...canceling again, suuuper."

I wonder how many parents of chronically ill children have to stay home with them out of necessity or work places not being able to accommodate the needs of an employee's chronically ill child. If you've been reading my blog through the years - you know I've been given the choice of being with my hospitalized child or losing my job...sadly, more than once. I wonder how many other parents like me, find themselves wondering if they're letting all other responsibilities down...such as school, siblings, work, etc...

On the positive side - my social life may be less than amazing, but the friendships I've made, via different online forums for other parents in similar situations to myself,  are too many to count. The friendships that I've formed on a certain "mommy board" when Liv was an infant have thrived through the years, with some of the most compassionate and caring women I could ever imagine touching my life. My son is a clear example of some of the things I'm (hopefully) getting right; he's this intelligent, kind, considerate, confident and selfless young man. My son will (usually) willingly sit down and just chat me up about a book, a class assignment, a Scout accomplishment/activity, future intentions and as far as I can tell, is fairly open with me - that's something I treasure so much.

If I haven't tooted my own horn enough in the previous paragraph, I'd like to think I've touched the lives of others myself. I'd like to think that through our trials, others have learned. I can be rough around the edges, sarcastic, stubborn, stretched thin (too bad this is figurative and not literal, d'oh) but at the end of the day - I regret nothing about where I am in life. I wouldn't trade the blessings I've received through the struggles for one single moment - if everything else sometimes feels like it's falling apart, but I have my faith and my little family; I am and have enough.  I began this "thought vomit" (yeah, that's gonna be a "thing" for me now, ha) feeling frustrated and thinking somehow I was failing at far too much, but this has really been the perspective I needed. Mission accomplished.

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.