I did say this is the good life, didn’t I?

I’ve been debating for almost a week now on whether or not this would be appropriate to blog about, but after talking to a few other moms with special kids, I feel like I need to do it out of necessity. 

Earlier this week, I was the recipient of the comment “I just feel so awful for your situation. I don’t know what I would do if any of my kids were sick like Ava. It just makes me realize how much more fortunate I am.” Ouch.

This person (we’ll call said person Debbie Downer), was someone I knew from my childhood, and have not seen since. Debbie Downer couldn’t have said it at a less appropriate time…it couldn’t have been said to sting any worse. The last two weeks we have been dealing with an extraordinary amount of Aicardi Syndrome related stress. Granted it could have been and has been a lot worse, so there is much to be thankful for, but it’s a bittersweet kind of gratitude.  All week when I’ve been asked how Ava is doing, I say she is doing great…because she is! She isn’t in the hospital and she’s alive and I get to hug her and kiss her and she gets to play with her brothers and watch football with her Popi. I’d say this week, with all of its struggles, has been a success.

Last weekend, Debbie Downer let me know how less fortunate I appear to be.  Sunday, outside stressors of family problems fueled the fire she started in me.  2 AM Monday morning, Ava woke up screaming. She had aspirated, couldn’t breathe, and had a different kind of fire burning in her lungs.  Monday morning she was put on an antibiotic to help control the infection -  $144.00 anitibiotic that our THREE insurances only cover 40 percent of (not exactly how I planned to splurge the stash away for a fun day money). She missed school for a couple of days and returned Wednesday. She’s been coughing all week to break up the solidifying Pediasure, and that hurts her. It hurts me, too. Wednesday I fell down wooden stairs while carrying her to her room and Ava hit the back of her head from my body weight, which sent her into a seizure where as most kids would cry, get a knot, and get over it.  It’s not even lunch yet today and I’ve already been called by the school teacher, nurse and principal about a seizure that she had that lasted ten + minutes. I’ve had to explain that this is normal for when she doesn’t feel good, but that she is used to it. You know what, I am sad this is normal for her, and I’m sad she hurts, and I’m sad for all of it, almost. I still don’t think our family is any less fortunate that anyone else’s…so I’m not sad about that.

I moped around heavy hearted this last week and with my mind filled with a lot of unanswered questions.  I was hurt that people and things I prayed for and received were slowly starting to pull away from me or just break altogether, Ava especially.  I’m not dumb, and I’m not really so blinded by the happiness she brings me that I don’t know I lose her a little bit every day I get her a little longer. It’s just nature.  Debbie Downer made me, for a second, question what I have to be thankful for.  And to be honest, when I think about it, Ava is the only thing in the world that can break my heart and heal it.  We may have many things going on in our family/my life to make someone see us as less fortunate, but she shouldn’t be one of them.

 I get it Debbie Downer, I really do.  I remember life pre-diagnosis and being so turned off by the possibility of having a less than perfect family. I do remember being that shallow, and that strayed away from God, etc..etc..etc.  I’m happy you have restored faith in your fortune after seeing my daughter, but I’m disappointed you don’t have faith in mine.  I have a husband who works three jobs to make sure splurges on antibiotics don’t hurt so badly, yet still is home enough that our children don’t feel his absence, nor me. I have three beautiful children: a special teacher of a daughter and two super intelligent boys. I have a nice home and we always have   plenty of food to eat.  I have friends who are always around and tons of books to read and people who need me and want to need me. I have faith. I have everything.  We all do, guys. I should have never let Debbie Downer take control of my emotions like that, so never mind her now.  There is always going to be someone who appears to be less fortunate than us, and I agree that we should use that as a constant reminder to be thankful for what we do have. But don’t you think that they could look at you and knit pick away until they found your blemishes? Do you think they would call your children a misfortune should they fail a test? Or runaway in a fit as a teenager? Or anything else that’s so normal it’s often written off as part of growing up and not a real problem? It doesn’t leave a good taste in your mouth does it?

I have a special daughter with extremely special needs. So what.  She’s perfect. I said my life is  a good one, and I mean it.