On being forged into a warrior mom
If I could summarize our journey from Hell to HOPEISM, it would be in my faith, which I call HOPEISM. It has been my weapon of choice to get me through each battle I have had to fight in my mission to win our war called life with autism and seizures. Vaccine injury to be more specific. It would also be in committing to heart, soul, & mind the words and motto's from Forged, NDCQ, the Lone Survivor, and Levi Lusko in his book, "Through the Eyes of a Lion." I will be forever grateful to the inspiration, encouragement, and mental fortitude found through all of them collectively. Because of that, I am not allowing this tragedy of vaccine injury that has come into our lives to be an obstacle to being used by God. I am instead turning it into an opportunity to be used like never before!
This blog is dedicated to Brandon. His life has been forged by difficulty, obstacles, & all too often because of seizures - pain, blood, broken teeth, & broken bones. Yet through all that he has shown such fortitude. The bravery, strength, & resilience of a true warrior. He taught me that having strength through adversity means that even if you lose every battle, like the Lone Survivor, you never quit fighting until you win the war. That in the words of "NDCQ," you keep "dreaming," keep "daring," & keep "doing." As Team Guppy has yet to be able to escape vaccine injury, we have no choice but to as Levi Lusko writes, "Run toward the Roar." God has indeed given us such incredible power in enduring such impossible pain.
Some days the HOPEISM in that simply takes my breath away.
July 17, 2011
Today is Saturday. Brandon had multiple seizures yesterday and was hyper today to make up for it. Hyper and still a bit wobbly, not a good combination. He was turning lights on and off all day long. Wanting to eat all day long (while tiring for me, a very welcome thing considering with the seizures these past ten months, he's lost about fifteen pounds).
Finally at 4 pm, I sat down on my bed to watch television while Brandon was in the other room humming to Barney. Every now and then he would wander in my room, and where I was sitting on my bed, he would carefully hand me one of these things pictured. Over the course of an hour, he would just come in, hand something to me, then leave. Very matter-of-fact and deliberate. I'm not sure why, whether he was scrolling commands, "bring me" "put away" "clean up," or whatever...
As annoying as that was considering I had to put all that stuff away, once I got over the annoyance of the constant interruptions and really took a look at all the things he had brought me, I had to laugh. And I was humbled. Each one of those things he gave me from different parts of the house, have such personal meaning to me. Each thing some of the most inspirational things in my life, even though some of them wouldn't seem like it. Where I was irritated, he was inspired.
The Pull-up: Yes, my seventeen-year old son still must wear them at times. But when I consider where we were, and how far we've come, I'm blessed. Thanks to the therapists at his private school, he is as close to toileting independence as he's ever been. Thanks to the GI Specialist who properly diagnosed and treated his "leaky gut" disease, we have the very chance to be as independent as possible with toileting. We have come so very far in the area that simple pull-up represents. Those two places have given us Hopeism and Healing where no other professionals did. The Lighthouse: The ceramic lighthouse figurine is one of the few "thing" possessions I have. I don't buy things to decorate. On tables, on shelves, or on walls. We live plainly, simply, sentimentally. I have only those few handmade items or gifts that inspire me. The lighthouse is "Old Barney" - from where I grew up as a little girl in Barnegat Light, NJ. It reminds me of all things innocent and good. The summers at the shore with my Grandparents, Uncles who were like the father I never had, and my mom. Anytime I get discouraged, I take myself there as a reminder of simpler times when life was not complicated. And I smile. The Band-aid: That humbled me the most. That simple band-aid he found on the floor somewhere that he took off his knee, was the day's devotional right there. In just thinking of how much healing has occurred in this house. Each of Brandon's falls from seizures, each broken bone, split open skin; and with Matt, his severed thumb, shoulder rehabilitation, broken foot, stitches, etc. Oh how God can heal any hurt we have! Talk about Hopeism! The pictures of Brandon: Even in those picture choices he brought, it's ironic how both mean so much in a different way. One picture from school representing the "Dream Team" he had when in Elementary School. The Special Education teachers there who truly got us on the right path of learning. They believed in Brandon, they went above and beyond with Brandon. The other picture of him at a park. One of the rare pictures where he doesn't have the classic "autism look" that most of our pictures reflect. The Sailboat: This perhaps one of the most inspirational things I have in my home. And as if he knew, he carried it so delicately to me. He had to reach high on the mantle to even get that. It represents a decision I made last year to cast off all anchors that hinder me - to sail on - unhindered - free - renewed - and with a more focused purpose. It was hard to let go of relationships that were fake, hypocritical, and at times mentally abusive. It was hard to abandon being part of things I cared deeply about, but where there is no desire to change, I could not continue dragging the anchor of trying. Where ignored, I would not pursue any longer. I had to sail on.
These treasurers - these Blessings from God that Brandon brought me - touched me deeply in how God used this little boy bringing me these particular objects, to reassure me that he is in control. Especially during the times that are so chaotic. Like that Saturday.
In that imperfect day, with that imperfect child, I was humbled by perfection.
The child I don't understand. Understood.
The God that sometimes doesn't seem there. Is.