Mama… I feel ya. Sometimes the days just seem to blend one into the other. Suddenly, you seem to have lost your sense of self and everything is being carefully juggled just to maintain the status quo. You don’t even know how tired you are.
I’ve been there. Life was not planned or imagined it was managed and endured. Most of the time, you don’t even have the time or energy to be resentful or bitter about it. There’s too much to do and figure out to take those moments to think about the life you lost in the flurry of research and/or therapies and/or education meetings and/or dietary interventions and/or doctor and specialist appointments and/or dealing with insurance companies and… well… you know. The list is endless.
Often we’re doing it alone. If there’s a spouse in the picture, we are often the point person; and because we are SO immersed in it day in and day out, the other adult can barely hold an informed conversation with you on the topic. That assumes they even try to. And they feel so undereducated to help that they step back… and maybe you two are even just roommates at this point. For many of you, there is the fighting… how much money will be spent doing this thing or that… insurance doesn’t cover it… one gripes about pseudoscience… the other about the inability to leave the house because of the behavior.
You can pretty much never find a sitter. At least not one you feel completely at ease with. If you haven’t become a master organizer, you’re drowning in the papers. And then the stress that comes with not being able to find what you need. The only bath you know of is the epsom salt bath that could potentially get magnesium into your child and calm them down.
The world doesn’t understand.
When BigGuy was three, I’m not sure what on EARTH possessed us to take him–with an autism spectrum diagnosis, atypical general epilepsy diagnosis, sensory issues and an immune deficiency–to a toddler amusement park nearby. In retrospect, it’s still an insane thought. But in a moment of time while we were there, I realized that we had become a therapeutic unit–not a family. His results were profound and wonderful. There were plenty of victory celebrations and smiles. But there wasn’t that gentle “just being” love. It was a huge wake-up call. From then on, I just loved him. And it was okay.
I am on year 12. And I want to reach back in time to those of you with younger children living this life.
Stop and breathe.
Under that list of diagnoses or possible diagnoses and symptoms and challenges–there is a child. That child loves you. That child loves you with every ounce of blood in their body and every hair on their head. They may not be capable of controlling the chemicals in their body or their muscles to show you the love that you may be missing, but know that they are in the battle with you and they want to show you how very much you are loved and how very thankful they are for their warrior mama.
And when your child starts showing signs of progress and perhaps gets better and better, remember these days. Remember how incredibly hard it was. Remember the countless things they couldn’t do and realize that the frustrations you have with your tween or teen are the result of progress.
Remember that underneath that incredible change is a child that overcame so much, and may still struggle in new ways that you’re not yet understanding. But they still love you.
Literally as I was typing this post, I got a call on my cell phone from an out of state number and decided to pick it up. BigGuy is done with a year-long wait to see a specialist that can help us figure out the lay of the land for him. Two full mornings of evaluations with a psychologist specializing in cognitive, psychosocial and academic functioning in kids with giftedness, autism and ADHD. Reading this woman’s profile made me cry. In good ways. But in scary ways, too. They are three hours away. I am heading back into battle.
Things around here have been so, so hard lately; and it just got to a point where I had to let every last thing go and just love my boy.
Just love them.
We lose that feeling in the overwhelm. We are driven BECAUSE we love them but we often forget to show them in ways that they fully understand. On the most basic level.
If you have a child that cannot manage the physical closeness of a hug or can’t make eye contact enough to see (or register the warmth of) a smile–find something that connects for them as “love” and do that for them. They’re working hard, too. They don’t see the victory in some of the mountains they’ve conquered.
But they will know love if you can find their language for it.
Much, much love to you, warrior mama.