I suppose my first blog post should be more of an origin story but I'm just not feeling that today. It's taken me a looooong time to get this blog started so I'm going with what's motivating me right now, and that's the perception of life with a special needs kiddo. You see, people are always saying to me that they are amazed with my strength. Now, those of us that are caretakers know that the strength doesn't come from some special well within our soul. It's so much more basic than that...we love those we are caring for and also we have no choice. I can't choose not to give Adelaide her night meds because I'm too tired, or choose to not sleep with her in the hospital because I'd rather be in my own bed. We do what we do because we have to, but more importantly, and to my larger point, we can not do it alone.
Once upon a time, I was ferociously independent and would never ask for help. Adelaide changed all of that. I remain "strong" and outwardly put together, because of our support system. Our immediate families do not live near us so this network includes but is not limited to: second cousins, my mom's sorority sister, everyone with whom our son, Jackson, has ever gone to school, his teachers, nurses we've met at the hospital, other epilepsy families, neighbors, essentially anyone who has ever given me their phone number ever. Have we had coffee or said hello on the playground? Yeah, I've probably asked you for a favor. My IOU list is epic and you know what? I'm ok with that. I recently broke down and hired a home nurse who is now with us four days a week, 10 hours a day and it was the best decision I ever made. My health and sanity would be fractured without her. You won't see her or many of our other behind the scenes support figures in our photos, but trust me, they are there.
Side note: Our insurance covers the home nursing expense, but for those who don't have access to this type of care through standard insurance: look into Medicaid or if you make too much money there is a Medicaid waiver program through which you may qualify for home nursing. Contact your state's department of specialized care or specialized child care for more info.
Last but certainly not least, Miguel and I are in this together. I may run the day to day operations but emotionally we make sure we are on the same wave-length. Our support network helps us make sure our children are taken care of and Miguel and I make sure that we are emotionally taking care of each other. I am beyond grateful to have him as a partner on this journey. Man-bun and all.