I follow a page on Facebook that is an online special needs magazine called "Parenting Special Needs". Em and I were actually featured in it last year with our Easter story and picture from 2011. But they posted a question that raised quite a thread of controversial opinions.
Here is what it said:
"You know that show "Wife Swap"? Could you imagine if they did "Special Needs Mother Swap"?... it would be pretty interesting... (not very practical, I know) but, could you imagine? It would make interesting TV and raise a lot of awareness.
Just pretend... how would it work? Would you switch just "Special Needs Moms" or a Special Needs Mom with a Mom that has a certain number of children? Could it be done?"
Of course my first response was that I would be ALL for that, because I encounter so many people on a daily basis that just "don't get it".... Like the nurse for one of Em's specialists that couldn't understand how I could go 8 months+ over the time I was supposed to make her next appointment, I had to explain to her that Em sees no less than 20 specialists, and it is nearly impossible to keep up with who and when we need to see them.... some are every 3 or 4 months.... some every 6, others yearly, some every other year... it's enough to make anyone cRaZy!! I remembered after a bit that as I left the last appointment and tried to make another for 4 months later, they wouldn't let me, they told me I would need to call. I didn't understand this because I was standing right in front of the people I would get on the phone... but it was close to quitting time or whatever! So yeah, if I can't make an appointment that I then can put directly into my phone and later into a planner when I leave, or I don't get a reminder card in the mail that it's time to make an appointment, chances are it's not gonna happen! She still was not very nice, so again I had to sigh to myself after I hung up the phone that she just "didn't get it". Oh and she told me we wouldn't be able to get in to see the doctor until August because of my mistake, which meant that Em would go without one of her vital medications (her growth hormone) for that long. She told me I could try to call the scheduler and get on a cancellation list, or try and see another doctor. So immediately I called the scheduler and she informed me that I didn't need to see the doctor, I could see the nurse practitioner (whom we like better anyway), and she had an opening the following week... Awesome.... so glad I got that nasty guilt trip for nothing!
So my point is, there needs to be more compassion and understanding for what we as special needs parents go through on a daily basis. But then there are times where I think, "could anyone else really handle this?" Please don't think of me as cocky because I am NOT... for heaven's sake, I barely handle it most of the time! But I have grown accustom to it, I have done it for so long, and it has adapted to us and us to it. There are things I have to do and face that I really wouldn't wish on anyone. Sometimes there are surprises.... sometimes there is devastation.
Both of these were experienced at an appointment we went to last Friday. And I still don't know why I'm taking this so hard, but I am. We had a routine, yearly appointment with Em's cardiologist. For those that don't know, Em was born with a minor heart defect, called pulmonary valve stinosis, which means the valve that goes from her heart to her lungs is constricted a little bit. So far it is not constricted enough to be problematic and as long as it grew along with her, no intervention would be needed. So they check her, at first it was every 4 months, then every 6... and last year, her doctor decided yearly would be enough because everything was looking good. So this year when we went in a year from the last time we went in, I expected everything to be the same. You see Em faces a lot, but everything she has going on, we have pretty much known about since her first year of life, so anything new that would come up would seem as a shock I suppose. And a shock it certainly was when they told me they found a new problem with Em's heart... her main aortic valve is now constricted, as well as leaking, but it's nothing to be too alarmed about..... uh.... WHAT?! Pretty sure any leaking linked with the heart could be considered bad.... am I right? But no, she assured me that they grade it on a scale of 0-4, and right now she is at a 1+, borderline of a 2.... 3 is when they'd consider medication and 4+ is when they'd consider a laproscopic procedure. All very minor, nothing like open heart surgery. And probably something I wouldn't need to worry about anyway. So why then did I cry the entire way home? Was it just the shock? Was it the unfamiliar? Or was it the possibility that this could be a gateway to whole onslaught of surprises to come... that we may never know all that that missing DNA caused in the big picture of our little girl. Who's to say what could be next?..... and maybe, just maybe, it was all of the above.
Now I may be worrying over nothing, but it is very likely that this will not be the only surprise we will get in our daughter's health. The truth is, she is at greater risk for a lot of unpleasant things, and that is something we will always have to keep in the back of our minds. I don't like to think about that, especially considering how close we've come to some really unpleasant diagnoses, like hemophilia, bone marrow disease and cancer to name a few. Thankfully none of them panned out though.
So coming back, could anyone really do what we do? Even the things we consider pretty routine- replacing her g-tube button when it gets yanked out of her stomach, dealing with doctors and medical aspects, which includes an endless amount of paperwork, fighting with the insurance constantly, remembering dosing of all her dozen+ medications she takes daily, carrying her everywhere, as well as lifting her wheelchair in and out of the car.... and having to deal with the fact that you won't always get an adequate parking space to do so. Dealing with the stares, the looks of pity, the comments and questions of those who don't understand how much their words can hurt.... yeah, all that... this is all on a daily basis.
Then there's the other stuff that haunts my nightmares. The fact that a bad cold from a typical kid could be a deadly, nasty RSV for her, that puts her in the intensive care unit on a breathing machine fighting for her life.... and a miracle. The unexplained vomiting of blood that we still never know when is going to hit, and we still don't know why it does. The breathing treatments.... and the one that is the worst for my anxiety- the anaphylactic reactions..... having to carry an epi-pen everywhere we go, giving her countless doses of benadryl in the hopes that we won't have to give her that epi-pen... the outcry and scrambling when a child who has milk all over them is getting too close to her.... the constant worry when she is under someone else's watch, although I trust her teachers and those who help care for her, there is still constant worry.
This is when I have to take a step back and realize I do a lot. And I do more than I ever realized I was capable of, not because it was my choice, but because I love my daughter and I would do anything for her. I think anyone that is a parent can relate to that though. Special needs parents are really nothing more than parents. All loving parents love their kids, and all loving parents would do anything for their kids..... we just happen to do more for our kids than most. So would you switch places? After thinking on it, I don't think I could. I would worry constantly that she was getting the care that she needs, and really I don't want anyone else to do it. She is mine, and even though I don't always feel like I deserve her, I was meant to be her mother.
