There are days that I wonder, how long will this smile last? How long can I convince myself and those around me, that I am okay? Even though I am terrible at math, I am becoming a master at calculating what I can and cannot do. See, the tough part is that I cannot calculate or reason with an incurable illness. There are days where the symptoms are similar but there never is a consistent pattern. So I run many scenarios in my head and prepare for the worst. Someone joked the other day that my purse was huge. I responded to that by telling them that it was more of a survival bag than a purse. I am essentially carrying an adult “diaper bag”, sans the diapers. Well, not yet at least! Needless to say, getting out of the house with myself and two kids is quite the process. I also need to be prepared for their symptoms!
One of the hardest parts about being a parent with a chronic illness to children with chronic illnesses, is that my kiddos still have energy. They may have some of the same illnesses as me but can have an energy level that NASA envies. I still have not pinpointed the moment when my energy left me, nonetheless, my kids wear me out. Also, children fight exhaustion. I give into it, when I know my body needs rest. So not only do I have a symptomatic, sleepy child, they are also cranky. Do you know how many times a day I think to myself “I do not have the energy for this”? So, so many. However, that is okay. Because in that moment my kids need me and I always try to show up for them.
For myself, as an adult, giving into the exhaustion can be a huge liability. When I am fatigued I start tuning out the chatter of my six year old. He is in an “I love to hear my own voice” phase, so it is easy to tune out the chatter. However, that can also have consequences when your 9 year old sneaks a request in that you auto approve, in your autopilot state. Next thing you know, you are the proud owners of a llama. I feel like I live in a state of “what just happened?”.
The other day I leave with the boys to take Jonah to school and Noah to an appointment. About ten minutes in I realize I forgot to take Jonah to school. He was still in the back seat. So we turn around and drop him off. These are the times where I can start being hard on myself. Sometimes my diagnoses creep in and tell me that I am a crappy, sick parent. It is, at that time where I tell myself that I will not suffer with these illnesses, I will LIVE through them.
As hard as it is sometimes, I would not change it. I love being a parent to these amazing little people. They give me inspiration to take just one more step, when I see them playing through the pain. My experience with these illnesses will walk them through hardship and that is an honor! I have read a few articles recently from different perspectives on having children when you are chronically ill. So, I wanted to share mine. That does not mean though that because I have two children that my EDS never affected my ability to have children. I lost two pregnancies between my boys and had to have a full hysterectomy with ovary removal two years ago. During a time where I was still very hopeful about having a child with my new husband. So, I am very grateful for my two boys. Even if my new look is “super exhausted chic”.