Raising a medically complex child adds a whole new layer to life. It is by no means easy, but living our new normal has taught me so much. I am incredibly thankful for each new day God gives on a completely different level than I was before Sam. This is a world I really didn’t even know existed. We have experienced things most will not. That being said, there are things about our new life I hope people understand.
Don’t stop inviting us.
Our new life truly forces us to live one day at a time, whether we want to or not, which really isn’t such a bad thing. As much as we want to commit to something, in the back of our mind, we know, first hand, plans can change in an instant, or often they don’t work with our curfew, yes, curfew. Some days our nurses leave at 3:00, and some days at 7:00, and some days we don’t have a nurse at all, because they get sick or the nursing agency isn’t able to schedule someone. As much as we want him to, Sam doesn’t get to go out and about very much. Per his doctors request, he generally only leaves the house for an appointment or to go on a walk. Your cold can be Sam’s PICU stay. Our Minnesota frigid weather left us without a lot of options. Summer opens a whole new world for us and we are loving it!
Everything we do centers around Sam’s nursing schedule and whether or not we have a nurse. And whether or not Sam is healthy. Although we might say no A LOT, because we really don’t have any other option, or have to cancel at the last minute, we still want the invite.
It’s okay to ask.
Sometimes, I get the feeling people don’t know what to say, so they don’t say anything at all. It’s okay to ask about Sam. He’s a very complicated guy, even in the medical community. That being said, unless you have a child like Sam, keep in mind, things you suggest, we’ve already tried or already know about. We don’t mind answering your questions. You just have to ask.
Things are not “back to normal”.
Things will not ever be the way they were, but that’s okay. It’s a new normal with a whole new game plan and although the new one is not always easy, we wouldn’t change it. Sam. Is. Alive.
Be careful what you say.
I can say now, more than ever, I try hard to think before I speak. Of course, I still fail. This experience has taught me someone’s complainant may be the other’s wish. It’s awful hard to listen to a complaint you would give anything to have. I guess I try not to complain in general. It’s something I’ve always tried to steer clear of. Even when it’s hard, trying to find something to be thankful for can shed a whole new light on a subject. “Give thanks no matter what happens.” (1 Thessalonians 5:18 NIRV)
We don’t want pity.
I’m not going to lie and tell you life with Sam is a cake walk. It’s. Not. Caring for Sam and three other kids, is by far, the hardest and scariest thing I’ve ever done and then some. There are days I wonder how we do it. There are days I cry, but we all have days like that. Life isn’t always easy. Sometimes slapping a smile on your face can be tough, but I can tell you from experience, it can do wonders. I’ve said it before, and I’ll say it again, I choose to dwell on the perks. You might read about the hard stuff, but if you see me, you probably won’t hear me talking about it.
Sam has made me a better person. I know my kids will be better having Sam a part of them. We could walk around telling people all the difficult details, but again, I believe attitude has the power to worsen or improve circumstances. When you feel pity coming on, remember, you would do the same if you had a Sam. The joy Sam brings us far outweighs the day to day challenges we face and have faced.
I’m guessing I’m not the only mama who has a child with special needs and/or complex medical issues who has these feelings. I would say I am an open book, heart on your sleeve type of gal. This is a glimpse into a world that is foreign to many and it is my hope to bridge any gaps of misunderstanding.
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