I've been really conflicted on the word "lucky" lately. I've read several articles the last few weeks that have shown up on my Facebook feeds- articles like - "What Every Special Needs Mom Wished You Knew" or "Things Every Special Needs Parents Wished They Could Say"...some I read and just shake my head, because it's common sense and some I read and think, ok I can relate. I think I'm going to write one, or maybe add to one because I'm sure it's already out there entitled "Words or Phrases Not To Use With Special Needs Parents" I KNOW when people who don't really know us or our situation say things that it is always coming from a good place, but more often than not I lay awake at night thinking over and over about a "well meant" conversation that I've had and it really is enough to drive me batty when I over analyze. Merriam Webster defines luck as: 1. To prosper or succeed especially through chance or good fortune. or 2: To come upon something desirable by chance. So when people say Oh, you are SO LUCKY you have a nurse, or you are SO LUCKY you have a handicap van, I see where they are going, but I don't think LUCK. If I could eat my favorite chocolate chip mint ice cream cone every night and not have to think twice about hitting the treadmill, now that's LUCK! If I were to walk down the same street every day and find a $50 bill every time, now that's LUCK! I would not say my circumstances are lucky - by any stretch of the imagination.
Several circumstances of late require that I be at home for the summer and my bosses have graciously agreed to let me work from home. We have never been a one income family. Having children is not cheap and when you add a special needs kid in the mix and your expenses automatically double from your typical child so I've always worked. A little bit of my work history: I had a great job with the same firm for over 13 years. I was already working there when Alex was born so they went through all of the ups and downs of her birth and realizations that she was a special kid with me. The firm was accommodating to my changing needs and I thought there was no way I would ever leave. But things change and one day it became exceedingly clear to me that my time there was done. Leaving that safety net was one of the biggest blind leaps of faith I ever had to take but I knew it was the right move for me. I took the summer off and enjoyed being home with the kids all the while thinking there was no way I would be able to go back to work - there was no company that was going to understand my situation with Alex and be accommodating to my needs. Never say never :)
There have been some concerns about Alex's back and her scoliosis lately so two weeks ago we went for an x-ray. The results were a little less than desirable, and honestly, a little shocking to all of us.
We are at a 30 degree curve. Double where we were last year. Alex has been having a lot of postural issues, including some issues with her hips. Her orthopedic said you start talking about surgery, surgery that includes adding pins and rods in her back when you get to a 45 degree curve and I immediately said that wasn't an option. I instantly had flash backs to her leg surgery last December and her three month recovery that was incredibly hard on all of us and I really don't want to go back there. Aaron and I both said the same thing - NO way. When I talked to her Physical Therapist, Shannon, she gave me the reality slap and said it would have to be an option if we get there because eventually the curve will impeded on her lungs and she wont be able to breathe. So we need to be even more aggressive with her therapy and posturing and make sure when we go back in 6 months for another x-ray we are maintaining and not any worse.
Our summer consists of therapy, therapy and a little more therapy. I don't think Alex thinks that's very lucky. I'm sure she'd love to spend her time at the pool, at a sleep away camp or hanging out at the mall or movie theatre with friends.
Instead we start our day in her Universal Cage doing weighted exercises.
And before it gets too hot she goes in her walker up and down the driveway.
And later in the afternoon it's an hour in her stander.
Every week we see Shannon and work out at Physical Therapy.
And we spend time with Speech and OT working on using an eye gaze communication system.
And we go to another OT to work on our vestibular motion issues....
...and to work on our reaching and purposeful play.
Throw in the feeding issues, seizure management and combining all those therapy based lessons into every day life at home and it makes for a very long day that doesn't leave much time for anything else. That's where I get conflicted when I'm told I'm SO LUCKY I get to stay home for the summer.
I DO think that I am blessed to be able to work from home, a synonymous word, but having received "divine favor" resonates more with me.
Over 2 years ago, I got the incredible opportunity to go to work with two great guys who were starting up a business. And these guys KNEW about "our life with Alex" and they were still willing to hire me. From day one they have inquired about her, cared about her, visited her in the hospital, brought us meals when she's had surgery, rooted her on at Special Olympics events AND let me keep my job! Between my two bosses and myself we have a total of 8 kids. They get it. They get the whole work/life balance. On top of that it's a local healthcare staffing agency, Gateway Healthcare Professionals, so they have a vested interest in the medical professionals who are living and working in our community that have the potential to care for Alex, their kids, their families. I get to meet people every day and help employ people who will make a difference in our community, in Alex's community. I always joke that I'm not a Doctor, I just play one at home. Since we pretty much see every "ist" in the area I like to think I know a bit about the medical community so I love the fact that I get to place people who I would want to take care of Alex with clients that I would want to take Alex to. Gateway honestly celebrates the miracles of medicine and that is something I am LUCKY and BLESSED to be a part of!