Without a Crystal Ball

Our Journey through Chronic Illness & Autism

I’m in a season of my life, where things are really exhausting and I don’t get a break. It’s a season that I don’t really know if is an actual season or a lifetime. My son is medically fragile, and he has severe sensory processing disorder. Our lives are very busy, very exhausting and very chaotic. There are a lot of joy, giggles and progress made each and every day. However, there is also a lot of exhaustion and feelings of being completely stuck in a place that I cannot leave. I know part of that is being a parent. When you chose to become a mother, you take on that commitment of being there for a child. Your world becomes helping them navigate the world, feeding them, teaching them, loving them  and ensuring you don’t end up raising a jerk with entitlement issues. I don’t know a lot of mom’s that aren’t tired. Even my friends with typical children often look like they have been hit by a tornado. I wish I felt like I was hit by a tornado, but most days I feel more like I’m in the eye of a category 5 hurricane and it’s never going away.

Listen, I’m not in to being jealous of people, and I really try hard to never feel bad about our circumstances. My kid is amazing. He is so much fun, and I love the person he is becoming. However, I am the tiniest bit jealous of my friends with typical children. I am jealous they can drop their kid off at a friend without a list of instructions 14 pages long. When we are at events, it is hard for me seeing people be able to relax because it’s never an option for me. We can’t take our child anywhere without him having to be constantly monitored and followed. In most cases going places with him is more stressful than just staying at home. Over the course of his life, it’s been really hard to maintain any form of friendship. I’m a lousy friend most of the time. I talk about my son all the time, I can’t really focus on anything outside of his needs, I can’t watch my friends kids, and I rarely have time to listen to their needs. This is not who I am as a person. My entire life I’ve always been happy to help anyone, and I love going the extra mile and never care if I get anything in return. I enjoy serving other people.

I know a break would make this all better. I know even a night or two away from this life would give me the energy to keep going another day. The problem is a night or two away never changes our reality. Even a small amount of respite, while nice, doesn’t cure the long term issue that I am now a caregiver of a medically fragile child. I would say the hardest part in all of it is there is a severe lack of respite for families like ours. We have to have someone that can manage equipment, check vitals, give medications, feed him through a tube, vent him through his G-tube because he cannot burp on his own, and they need to monitor his stamina so he doesn’t run out of breath and collapse.

Over the summer, I thought it would be good to use his time at therapy to go for runs. That was a huge mistake. In the middle of a run, I got a desperate call from his therapist that his lips had turned blue and he was having a hard time breathing. Can you imagine my panic? I was 2 miles away from the clinic. I had no car. I had to run back in the hope that the 15-20 minutes it would take me to get there that he would be ok. I remember running with tears streaming down my face because I was terrified that I was going to be too late.  I finally arrived, I ran my first mile in under 7 minutes, which I had never done before. I believe it took me about 16 minutes total to get there. Nothing will improve your running pace better than panic. When I arrived, he was playing on the floor quietly with his therapist. I could tell he was still in distress. I realized immediately his G-tube needed to be vented. The air pockets in his stomach were going up his esophagus and making it hard for him to breathe.  After that day, I never left his therapy. I just didn’t feel comfortable knowing that his stomach is so volatile that he could need to be vented at a moments notice. Therapists are not trained to manage medical issues. From that point forward, I gave up something I truly loved to keep him safe.

Date nights don’t exist very much either. I know this isn’t an isolated problem just for parents with children that are medically fragile. For some it’s a financial issue, for others they have no support to watch the child, and for others they may work different shifts and it never lines up. For us there is really only a few people we can trust to watch him. Even though they know him, none of them are with him enough to know his queues for distress. Before we even leave, I have to set up everything and imagine every scenario. I have to ensure his feeding pump is ready to go, and lay out all of his medications. We try to leave after he’s had any food so I have time to vent him if needed. Then we have a solid 3-4 hours we can be away without me having a panic attack. I worry excessively when I am away from him. I am sure it’s a combination of my anxiety and PTSD, but it’s part our life. I just can’t relax because there are so many times I have relaxed and the worst has happened with his health.

I hope and pray that as he gets older this will become easier. Unfortunately, over the course of 4 years, his health has only gotten worse so I’m not sure if that will happen. While other mom’s are dreaming about trips away, spending time at a spa, or a girls weekend, my one true fantasy is a day without any worry, a day without any complication, and a day where I can just relax and know my son will be ok. My hope is one day that fantasy will be a reality.

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2 thoughts on “The Burn Out and Fatigue of Caring for a Medically Fragile Child

  1. You’re right, the circumstances are not a season, they’re forever. But YOU are in a season that will change 🙂 I just finished a blog post about my weekend getaway to Paris. Nick is 16 and I think it actually gets a little harder, not easier. And, yes, I arrived here last night to the same reality (actually worse because when they picked me up at the airport Nick had a bad cough and a fever!). Good Paris vibes, gone :(. BUT…..Your perception of everything will continue to evolve. Your ability to cope and take things in stride will increase. I now look at moms of typical kids almost with pity, like they’ve missed out on something so DEEP and PROFOUND, and just kinda skated by the whole parenting thing. Your season WILL CHANGE….you will go through lots of new awesome – or not – seasons, that will continue to enhance your life and your world so wonderfully. Your reality is different from most, category 5 status may remain as your daily forecast, but I promise it will be different, and the storm will begin to feel like a warm, comforting summer breeze that you just kinda flow along with. You’re doing a great job! Stand in the eye of that hurricane and keep trusting that God will grace you with new Mercy every morning 🙂

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    1. OMG thank you so much for that! You have to know you are one of the mom’s I admire so much in your faith, your devotion to your boys, and your positive outlook. Thank you for the reminder that my seasons will change and so will my perspective!

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