Being the mom of a child with extra needs has it’s challenges. Duh. Well, you’d think that it would be “duh…”
But today, I would like to say thank you to that handful of friends who have stuck by me through this crazy rollercoaster Cystic Fibrosis has brought us on. The one’s who realize that my life has gotten to a new level of “crazy busy.”
That on top of regular life, we have at least an hour a day of treatments & CF care that needs to be attended to. Not including the piles of pills and medicines we feed to our child every day. What we wouldn’t do for that extra hour in the day…
That on top of regular bills, on a weekly (if not daily) basis we receive medical bills – bills that stress us out, and will have no end.
That on top of regular life, we spend hours and hours on the phone with insurance companies because “someone coded something incorrectly.”
That on top of regular life, we make the drive to visit Gavin’s medical team over and over again, keeping him as healthy as possible.
That on top of regular life, we’d love to add to our family, but the threat of CF round two is just too scary. And we don’t have the 20 grand laying around to go through with IVF.
That on top of regular life, when you have a child with extra needs – your social life takes a back seat. There aren’t enough hours in the day sometimes to return that phone call, that text, that email AND accomplish what needs to be done – and if you or we are sick, we’ll be missing that get together. That before you know it, a month has gone by and you haven’t even had a moment to sit down and chat.
That on top of regular life, we spend our time trying to raise every penny possible to find that cure for our child. To shout from the top of rooftops, trying to make CF a household name – more awareness gets us closer to that cure.
When Gavin was first diagnosed, I would read many stories of people losing “friends.” That many people “disappeared” not wanting to hear of the difficulties, and never understanding or trying to understand how much extra work truly goes into Gavin’s health. I was convinced that wouldn’t be us. I couldn’t imagine one person that didn’t or wouldn’t get it. But, well…almost 3 1/2 years in I stand corrected. There have been those that have disappeared. There are those that don’t want to hear about our difficulties. Those that – when you really, really need them – disappear into the woodwork. And then there are those who I haven’t seen or spoken to in over a decade, who have jumped forward and let me know that they are there – that they care, and they’re willing to help. Surprising how life works itself out.
So THANK YOU to my amazing friends who have stuck by my side. The ones who have never judged, never questioned, but have just been there. I appreciate it more than you know. You know who you are :)