A Real Downer, But With Cute Pictures at the End

Can I say it? It’s been a hard month. I’m finally taking some me time here at a random coffee shop. I just needed a break from life. Now that I’m here, the weight of everything is hitting me. Life has been heavy, and yet still beautiful at times. If you have a child with severe challenges, you will probably understand where I’m at emotionally right now. If you don’t, how could you, unless you’ve been in a household with a child with severe disabilities for a length of time? I’m not trying to sound “poor me,” it’s just the truth. If you haven’t walked in these shoes, it will be hard to explain what it is really like.

When you have a child with severe challenges, even if you have private-duty nurse coverage most days, you are susceptible to the unpredictable changes of the nurses you have come to rely on. We’ve had two nurses unexpectedly quit on us since beginning nursing coverage back in February. This immediately turns your world over for a period of time, not only because you now do not have help caring for your very high-maintenance child, but also because sometimes they send over a coverage nurse, and you have no idea what kind of a nurse you’re going to get, and then you’re also trying to interview several nurses in order to find someone who will be a good fit.

And of course you have to spend half your day training anyone who comes over to help. It’s not like, “Here’s my kid, figure it out.” It’s like, “Here’s a 3 page print out detailing Alan’s diagnosis, meds and supports, and here’s another 3 page print out detailing Alan’s daily routine and now I will walk you through everything for the next 4 hours before I can trust that you know enough to be alone with him for any length of time.”

As much as I don’t want to just complain on here, I have to be honest, it has been a hard month. We had a nurse leave recently and on top of that Alan has been struggling with some new issues. Sleep has been a challenge, Alan has had a hard time managing a recent increase in mucus and it’s been sticking in his lungs more persistently lately, requiring multiple rounds of breathing treatments and lots of chest physiotherapy every day. It also causes problems with keeping his food down because he gets chocked up on mucus. And then his reflux has been worsening as well, meaning that food will just kind of come up more easily than it used to. The laundry is ridiculous. Last week he alone created 3 loads of it. That’s just in one week! Thank God we have an attendant who comes usually once a week and helps with laundry and such.

Emotionally, I am drained. It’s hard to process your emotions when you have these random nights where your child is struggling so much that you honestly wonder if he’s going to make it. I sometimes look at him and feel his fragility so immensely that it scares me. Then I lean in and kiss his sweet cheeks and wonder how long I will have to do so. I want to cry in these moments, but I also feel this strange longing for a life that isn’t centered around my special needs child. Then I feel guilty for even feeling that for a second because Alan is the most wonderful, precious soul that I have ever known. Still, sometimes I just want a break.

I watch the world around me keep turning so effortlessly. I don’t want to join in the things that are frivolous (unless it’s my guilty pleasure of reality TV… Bachelorette… Master Chef… Married at First Sight), but sometimes I want to just have some time to be me again, to not have to worry so much about someone so dependent on me. I feel awkward when friends and acquaintances ask me how I’m doing. Do you really want to know? Sometimes I’m partially honest, sometimes I deflect. “We’re ok. Things are a bit nuts. How are you?” I feel like that’s more appropriate than, “Well, I was up for an hour in the middle of night giving my son another breathing treatment and chest physiotherapy, followed by aggressive suctioning of nose and mouth, he vomited mucus and eventually went back to sleep I think, and then I had to train a fill-in nurse for half the day who, it turns out, cannot even accurately draw up meds, and we have two appointments tomorrow, my 3 year old is regressing on potty-training and I kind of want to crawl in a hole and die. How are you?”

OK, that’s it. I got my negativity out. Thanks, friend. I know that isn’t fun to read. And I also know that you probably have your own gripes and problems that you could vent to me about. I do wish I could hear those as well. We all have our unique challenges and no one is immune to suffering, not even those who seem to have it completely made. I hope no matter what is going on in your life and your soul that you are holding on to the hope of a better day. I know God has good plans and that He is working out His will in and through those of us who are submitted to Him. I know that suffering and trials are tools He can use to accomplish purposes we know little about. I am ok with that, even though it can feel like too much for me sometimes.

Who knows, maybe my next post will be all sunshine and roses? But how boring would that be. : ) Here’s hoping for a little more boring this month. “Lord, please bless my dear little Alan, and my Dean and Henry as well. Please help us Lord, and Jim too. We need Your help every day. We rely on Your Goodness and Grace. Please bless all who read this. Bless our trials and suffering. May they bring us closer to You and mold us more into the likeness of Your Son.”

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