I often disappear when the medical diagnoses in my home are not under control. I am not saying this is how all parents of special needs children deal with it, but I do. It isn’t intentional or personal, it’s just how I cope. And to all my friends and family who have gone weeks or months without hearing from me…I am really sorry.
It’s as though my two eldest tag team back and forth between health and wellness. They have never been “stable” at the same time that I can remember. If Eddie’s epilepsy isn’t under control, or he’s just having “drop seizures” from extreme mental exhaustion…or if Layla’s medications aren’t cutting it and her mental state has spun out of control, all I can do is hide. All my energy is spent – I am in survival mode. I don’t go on Facebook, I struggle to return phone calls, I don’t attend parties, I just can’t. More importantly, the kids can’t either.
For self care: I do yoga, I write to process what is going on, read from Psalms and just pray for more strength and do the best I can. As hard as it can get at times, I try to remember that THIS is my calling. Whether it is the Lord or whether it is simply the state entrusting them into my care, THIS is my mission: to give each child in my home the level of care they need to reach THEIR personal potential. I am not going to try and cram them into a version of “success” that society tries to dictate for them. It takes quite a bit of pressure off when you can “train a child up in the ways HE or SHE should go.” (Proverbs 22:6) And this gives them permission to be themselves.
I was chatting with a friend the other day – we both have little boys with special needs but her son doesn’t have a firm diagnosis. And it impacts her family life dramatically. Our family had the same problem with both Layla and Eddie: it took years and years to get in front of the right specialist who could or would diagnose either child but we knew SOMETHING was terribly wrong since both were just toddlers. This is a difficult place to be and it is a difficult place for others outside the situation to understand. Despite the self care and constant personal reminders of my mission, the struggle never completely goes away when children have chronic medical issues.
One thing resonated significantly with me in our conversation: ISOLATION
…And even upon recalling conversations with other mothers in similar situations, I realized that I am not the only person who has children with medical issues who feels the isolation that just naturally happens when taking care of high needs kiddos. It is isolating for all of us for so many reasons I won’t even go into here (that is another blog altogether). But it isn’t anyone’s fault – everyone does the best they can with what they know! It is not a complaint, but merely an observation. Our situations are unique and isolation occurs for different reasons for each one of us.
So, what can our friends and family do to show us support? This is a difficult and multi-faceted question to answer and each of us would give you a very different response. (Sorry!) That said, if you notice you haven’t heard from people like us in a while….please, oh pretty please, reach out to us! Last fall, my aunt knew that our family had a particularly difficult time with a foster child with extremely high needs and then out of the blue, she sent me the sweetest care package filled with fun spa things to help me feel spoiled – I thought I had won the lottery! Even a simple phone call (that may or may not be immediately returned – but know it will mean the world to us to hear your voice and know you thought of us), or an encouraging text, or a card that comes via snail mail – the gesture is so deeply appreciated! We desperately need to hear from you.
For you parents out there in survival mode:
I am extremely curious as to what other parents do in tough times or long seasons when the “help,” or therapy, or medication doesn’t help?? How do you cope? What do you do for self care? I am dying to know!