I recently read an article on the Huffington post about parents of medically complex children face stress levels equivalent to combat veterans, and they live in day to day Post Traumatic Stress. As I read through the article, it was like a lightbulb had gone off in my head. The past 4.5 years have been like nothing I could honestly put into words. While I blog about our experience, the trauma and stress we endure could never be put into words. I think back to the early days, and I wonder how I got through it all. At times we lived minute to minute, and slowly it moved to an hour to an hour and then day to day. As our child has grown, our experience hasn’t changed regarding how much stress we face, but we have found better ways of coping with the stress. It took several years to find a path that made sense to me, and I had to try a lot of different methods before settling into a routine that works for my life.
I have come up with a list of things I do each and every day so that I can make it through another day of the unknown. My child has no prognosis, and that, in itself, is very hard to manage. There are pending surgeries, evaluations, changes in care, and new therapies on the horizon. Here is what I do each day to handle the stress:
Find time For your Spirit
My life is a crazy mess of stomach contents spilled on my legs, dirty diapers, filthy syringes, and empty medicine bottles. I spend so much time every day taking care of my son that I need to find a chance to recenter myself and get connected to my spirit. Now, I realize not everyone is spiritual, but this can take many forms. It could be quiet meditation just focusing on breathing, practicing yoga, which I do almost daily, or sitting quietly and just reflecting on your day. For those that believe in God, it could be quiet time spent reading their Bible, reading a devotional, or quietly sitting in prayer.
I realize that it’s hard to find a chance to get away from the house. Some days we are stuck at home dealing with some emergencies, and I have no time to hit the gym. There are so many easy ways to incorporate exercise into your day. Youtube offers videos you can watch, there are downloadable streaming apps you can watch on your phone or laptop with short classes, or simply get outside and take a short walk. When I haven’t moved for the day, I find myself not only edgier, but I am often more depressed. Make a point just to get out and do something active for yourself every day. Children with chronic illnesses need caretakers that are strong and capable.
Eat Nutrient Rich Food
It is SO easy to stuff your mouth with junk when you have a child running to and from appointments. However, foods high in sugar and carbs and low in protein are going to make you crash. Every day I start my day with protein in some form. It could be eggs, a beef stick, a cheese stick or a protein bar. I ensure I have lean proteins throughout the day. When I eat nutrient rich foods like Kale, spinach, wild greens, cabbages, I find that I have more energy throughout the day. Each day for lunch I always try to eat a salad with a lean protein. Eating a salad enables me to keep going and not feel dragged down by a heavy meal. I do cut myself some slack at night and make a regular dinner for my family. Over the past few years, I have found this diet works for me and keeps me going and high with energy. I also try to eat something every 2-3 hours. I keep snacks like carrots, grapes, almonds, cashews or string cheese handy in the house.
Check in with your partner or spouse
If you are married, it is so easy to get swept up in the madness of caring for a complex child. It is easy to set aside your relationship in caring for your child. However, if you are married, your child needs to see a healthy relationship and parents with a strong partnership. Every single day my husband and I find ways to check in with each other. It could be starting the day cuddling for a few minutes, texting one another throughout the day, or sending a quick email letting the other knowing we are thinking of them. It’s been imperative for us to stay connected and united. We make a point of eating dinner together nearly every night as well. Not only does this set an example for our child, but it gives the two of us time to chat about our day. Most nights we collapse into exhaustion, but we also attempt to spend a few nights a week together either watching TV tougher, reading side by side, or just chatting while we lay in bed.
Cuddle or find ways to love your child every day
I realize not all kids like to cuddle, and all have different love languages of how they best receive love. My son is very tactile, and he loves to cuddle. Every day in the morning, we wake up with a good cuddle. We talk about what we are going to do for the day, and we get ready together. During the day, I give him as many hugs and kisses as possible. He’s getting to the age where he doesn’t love them as much. When he comes to me for affection, I make a point to try to drop what I’m doing. It’s rare to find him come to me some days. I know how fragile his life is, and I never want to feel like I missed an opportunity to tell him I loved him. Breathe and enjoy these moments with your child. Even though there is a lot on your plate, at the end of the day, you are still a parent, and they are still your child.
For several years, I have found ways to manage stress and found ways that help me cope. I realize the not everyone will find value in what I do. I encourage you to try to find a way to incorporate your strategies into your day to ensure you are taking care of yourself. I honestly use to bristle when I heard “Just take care of yourself,” but 4.5 years into this wild journey and I know this is the truth. Be kind to yourself, forgive yourself, and always remember that if you have a bad day, there is always a better day around the corner.
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