Today is infusion day for my son so, on these days our anxiety is heightened. For him it's the fact that he has to be poked with a needle, has to sit for hours and can't just be a 10 year old boy. There are times when he breaks down, he pleads with me not to have to do it anymore. If it were up to me my baby would never have a needle touch his skin. The sad part is that the rewards out weigh the risk, so I have to help him to understand the necessity of his infusion and try not to cry in front of him.
We've done this every 2 weeks for the last 6 months. These infusions prevent his vital organs from shutting down. Saying that out loud is breathtakingly scary.
My 13 year old daughter has multiple medical issues which means we're still fighting (finding someone who will listen, necessary testing, deal with all of the insurance crap, etc.)for doctors to figure out what her medical issues stem from (she came back positive for a Mitochondrial disorder that has only affected 5 people, according to records), this definitely takes a toll on all of us. She tells her brother all of the time how lucky he is to have a treatment and that people at least know how to help him. This is so hard to hear my child say, it's devastating to say the least.
Their feelings are completely valid on both ends but, either way it is hard for them to comprehend how to recover and rebuild from each of these emotions.
The helplessness we feel from all of our medical issues can be unbearable at times. How do you(as a parent) cope with these inconsistent waves that prevent your every breath? Do you scream, cry, break things? Sometimes I do all of them.....
Taking on too much constantly is hard on my health. I am slowly learning how to set the proper boundaries and say "No!" when needed. These are key points to mental wellness. When you are the primary "go to" person for long periods of time it starts to become second nature to say yes to everything. Learning your own personal boundaries is mental flossing, cleaning out those crevices in order to be a better person.
We as human beings have trials and tribulation but, the constant barrages wear us down and nice lulls seem to come less frequently. Survival mode is real and lives in my body! This is why mental health is more than important in our world. Therapy is highly recommended if you have children in the same situation. This helps them to figure out how to recognize these emotions, express them correctly, as well as grow from them.
Not only does it help children with chronic illnesses but, it helps the caregivers, life is hard enough to not have some clarity through muddy waters. Even if it were just me, I would still see a therapist. I've always told people therapy is just like going to the dentist, it should be just as essential to aid the mind as it is to care for the body. It also benefits me to see from the outside when I'm lost in all the chaos.
There are other ways we relieve our stresses along with therapy (not that we have the time to do these often). Going into nature is a huge relief, even taking a walk around the block, camping, going to the park. These are things that take our mind off of what is happening around us and things that we're unable to control, just to breathe. I find getting a pedicure helps me to relax even more. I recently introduced this to my 13 year old daughter and she loved it! It helped with her circulation in her legs also. There are other short lived resources we utilize to give comfort and allow us step out of our own heads, even for 5 minutes, for me cooking does that, listening to music or even crying in my car.
I know that these are small things but these are things that literally get me through my day, talking about it is the most important but the little things are what give you the small breaks in between the big waves so remember to take care of your mind and your body in between those big waves
Until next time, take care of yourself!
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