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.
January 29, 2014
It was a chilly walk at the Nature Trail this morning. In more than one way at that. January is supposed to be a "New Beginning" -- a time to look forward with anticipation of the year ahead. And it is. It is a new beginning. I do have such anticipation of answered prayer in the year ahead. But still it's only January, and January has been hard. I've been reminded of so many unanswered prayers of the past few years with regard to Team Guppy. In my "Life with Autism" is it also a "Journey Closer to God" in that I can't survive one without drawing closer to the other. The harder life with autism gets, the more I must draw closer to God. Even though at times the closer I try to get to Him, the farther away He feels. But still, I press on in faith. And in doing that, is the realization that goes against most popular schools of preaching-style thought. In that sometimes being good doesn't mean bad things will not happen. That working hard doesn't always equate to having it easy. That if you say a prayer, it will be immediately answered. One thing that I am better understanding through the journey, is that a Sovereign God is one whose sovereignty you may not understand, but must accept if you are to find any joy at all in the journey.
That's where the rainbow comes in. I saw it at the beginning of the trail. I took a picture so once home I would be able to see if it really was one right there beside me or if my sleep deprivation was catching up to me. I've walked that trail dozens of times and have never seen something like that. I knew what all I wanted to share with God, ask God. God knew too. I guess that's why he placed that rainbow right there before I could begin so that throughout my walk I would be reminded of His promises. Be reminded that though at times I feel like I'm alone, I'm not. He will always be there to wrap me in a rainbow of His HOPEISM. I like that about God. He knew I would know that I will most likely not get the answers I seek any time soon, but he wanted me to simply know that He is the answer. That rainbow.... His reminder of HOPEISM. His comfort for my fears.
I walk the Nature Trail alone because that is my time with God. To listen to my worship songs and just sing them to Him. In thanks. In blessing. In awe. In total humility. I have to be out and away and have that undistracted time where there's no facebook, no laundry, no trying to drown out the making of my grocery list so I can focus on the reading of my prayer list. When songs come on that invite prayer, as in the song "Lay Em Down" -- I do just that. I did just that this morning. And boy was there a lot of laying down to do. Oh how I 'slammed down' with tears a few things that have been such bamboozlements in my life lately. Things where I know God has a plan, but I am so discouraged and confused in that what is going on right now cannot possibly be that plan. Oh how I'm praying those setbacks and disappointments are merely but a growing process portion of that plan. And then there's the realization that what if the plan and desires we have, are not God's plan at all? How could I possibly ever accept if His plan is different than ours, that whatever that plan is, will be more perfect than the thing we most wanted? How can God have something better in mind than the thing you most want with all your heart, soul, and mind? I laid that all down to God. I continued to walk. Continued to smile at the rogue rainbow I saw, and continued asking the questions I know that I will not immediately get an answer to. If ever. How.... How can where we are now be that plan to prosper us... We were created for more. We want to do more. We can do more. I prayed that for each of us in Team Guppy. I prayed that for an entire autism community.
And I do leave those things at His feet. But I think what people outside of "Life with Autism" do not get, is that there is still a cross to bear in that. Laying something down at God's feet means that you know only God has the power to deliver that prayer. Relieve that burden. Heal that illness. But in believing that, there is still doing to be done. I read a blog recently from NDCQ where he is sharing how positive thinking is a big part of success, but that positive doing is what allows you to succeed. You can sit in a dark room all day long and think positively about the light being turned on. But until you get up off that chair and turn it on, it will still be dark. I think in the Christian community there is way more thinking about the light than actually turning on the light. We're lit up pretty brightly from our Bible Studies and our fellowships and we help light the darkness thousands of miles away, but what about our brothers and sisters around us in our communities who are suffering from chronic illness, isolation, and fatigue. Are we only sitting in our churches praying for the light to turn on for them, or are we actually getting up and turning it on by helping to be that light for them? And I think in the autism organization community, there's way too much changing the light bulbs to blue to distract from the fact that they've never even turned on the light to directly help any of us in our dark. I don't mean any negativity or condemnation in those words, only to share the stark reality of those words. I have more e-mails of parents in my community needing help, than our community is helping with. And then there's the warrior mom's and dad's -- faithfully fighting, faithfully doing. Always...
I think what has totally caught up with me, is how Life with Autism is an unbearable weight carried by many, relieved by only a few. It's an unthinkable amount of doing, no matter how much positive thinking or warrior mentality we are doing it with. And doing it with no breaks, no weekends off, and for so many, no, or too few and far between, -- vacations to get away. For many, they do it with no sleep. Advocacy in life with autism is an even more unbearable weight. One where you just can't sit in the room and wish the ugly away. One where you must get up, put on your war paint, and battle it until you obliterate it. There is such sacrifice in that, a toll that can't be quantified. I just don't know how people do it without believing in the power of a God who makes that unbearable weight, bearable.
That night and day difference between chronic and acute illnesses has just astounded me this month. How so misunderstood it is. And I know there are many kinds of chronic illnesses, but I can not think of any more inclusive than autism. True autism, not celebrity or neuro-diverse or self-advocate Asperger syndrome. The kind of autism my son has where he cannot read, write, or speak. Where he is in pain and can't express it in any other way but self-injury. Where he has seizure upon seizure and because what he has is so complex and controversial that traditional medicine tries to revise it away because the reality of what "it" is, is something they aren't willing to even acknowledge. The kind of autism where he is in constant motion and in need of constant supervision because he is a constant flight risk.
And yet as I walked the Nature Trail this morning, I was reminded in that even though we lay down those prayers and those burdens, and even as we carry the cross of healing and advocating for our children, there is such purpose in it all. Trust me, each in their own way, we parents who have children, youth, and adults who are severely affected by autism, know the good. We see the blessings in things they have taught us versus what we've tried to teach them. How else do you think we can survive? One of the worse things you can say to such a parent when they are overwhelmed, is "think of the blessings.....". How else do you think we survive such isolation, such expense, such setbacks, such enormity of how autism affects each aspect of our life, our marriage, their life, their future? It is only those things, and the HOPEISM of good things to come, that keep us going. I guess that's why when walking I find myself saying out loud, "I went to Hawaii last year! I climbed down a volcano crater and then back up to the summit of the volcano to watch the sun set through the clouds..." In all the prayers that weren't answered, in all the disappointments, I had that. I had many little things, but they are sometimes dwarfed by the very big things of "Life with Autism." Hawaii didn't cure my son's autism. Didn't make me any richer to afford new and better treatments. Didn't take away the daily stress or fear of the future. It simply allowed me to escape autism. It allowed me to experience my unimaginable. It was something I would have never imagined, it was something I really did do. I still marvel at that. It was my rainbow at a time I needed one. Just like today's rainbow was.
I still have the same yet-to-be-answered prayers for those in Team Guppy. I still have the same frustration in not understanding the interim of what we hope and work for, and what God's will in all this will be. And I still bear the incredible weight that many of us in the autism community bear -- in trying to right a very big wrong in what has created the most horrific epidemic in my lifetime. In trying to overcome with truth, some very deeply rooted lies. And still no one but us, will ever fully understand any of that. What NDCQ is, what Never Quit means. How chronic, chronic really is. How we can keep dreaming and daring and doing. Others will read things such as this and assume we're depressed or are having a self-pity party. They will tell us to "count our blessings" and shallowly, yet in all sincerity, say that they're praying for us. But much like the story about positive thinking, for those of us living with chronic, lifelong situations such as "Life with Autism" -- what we really need in addition to prayer, is more people getting up off the chair to help turn on the light switch. More people trying to imagine a day in our shoes and thanking us for helping to prevent them from having to lace their own up when autism comes knocking at their door and snatches their child. More people asking specifically how they can pray for us, our children. Asking what they can do for us like what Hawaii was to our family. A chance to get away. A chance to see a dream come true. An opportunity to do what has been unthinkable so that we can come back with fresh wind and fresh fire to tackle our seemingly impossible with the renewed HOPEISM of possible.
I had so many questions this morning, such heartache for all who are hurting around me. I needed encouragement from the One who encourages. I needed it for me, and to give to those like me who are hurting and who are tired of the chronic-ness of autism.
I guess that's why God sent that rainbow as an answer before I could even get to my many questions.
And why He sent a Savior before we ever knew we needed one.
I just love how God works like that.
Life with Autism is black, white, and gray. The chronic nature of the illnesses our children, youth, and adults bear is not neat and tidy as we tend to want everything to be. It is hard and it is messy and it is tiring. To those friends of mine living that life, I pray for you a rainbow of HOPEISM to encourage you through it. To be that answer to the questions and the comfort to that fear. To those around me and around those friends, who aren't living life with autism, I ask of you to pray for how you can be someone who gets up and helps turn the light on for them, in whatever way you can, with whatever gift you've been blessed to help with.
To those who have not just prayed, but who got up and helped turn on the light for my family, I thank you so very much.
January 8, 2014
I bought myself a Christmas present. I've always wanted to make some sort of "family tree" where I could be surrounded by all our past and present family members. Some stencil of a tree on the wall with pictures as the leaves, or just a Christmas tree left out all year with family pictures as ornaments. But alas, in "Life with Autism" there is seldom time for such projects. I'm still working on getting family pictures in a stand up wall divider frame thingy that I bought months ago. I actually started to add some here and there, and my husband was like, "Don't take those pictures off, (that came with the frame) those people are like family now that they've been with us so long!
Well, I found this revolving ornament tree online, and knew I had to have it for my "project." It was perfect. For Christmas, the plan was to go and buy an ornament that to me, represents each family member. So that when I see that ornament on that tree, I would think of them. Then for the rest of the year, I would take the ornaments down, and replace them with a hanging picture of that person. I give myself about a year to get that done! Ok fine, two years......
But since I'm crazy, mad, weird me, I wanted to make it something more. I do not like the concept of funerals. I'll just blurt that weirdness of mine out there. Seeing someone in a casket the way they never looked in life, is just wrong. Saying kind things about them that 1) they can't hear, and that 2) you've never said to them when they could hear you, is just wrong to me. So the past couple of Christmases I have begun taking time to send a Christmas letter to those who came to mind as to being a special blessing in our year. A yearly eulogy if you must. Just sharing with them something that blesses me about them. I just, want those in my life to know how I feel about them while it counts. And what a gift that is to receive - encouragement from others.
It was such fun. Going out to the store and really thinking about the person who I would buy an ornament for, what would represent them, and then coming home to write a Christmas letter to them about why I chose that ornament and what that person means to me.
For our Christmas -- when my Navy-son and his wife came home after Christmas, I invited her family and ours over for our Christmas dinner and to do this Christmas project. I had 15 or so Christmas bags that had an ornament and a letter in it. I cut out enough strips of paper with numbers on them, one for each of us. After each number was written either "Past" "Present" or "Future". Meaning that when each drew a number, when it was their turn, they would share a story of Christmas past, Christmas present, or a hope of Christmas future. It was a time of "Old Fashioned" sitting around the campfire telling stories. Not doing anything, not watching anything, just listening. Just really getting to have a glimpse of someone else's life. Hear their story. I cannot tell you what a blessing it was. Such a time of love, laughter, and tears in sweet remembrances of Christmas past. Thankfulness of Christmas present and all who were with us. Some people who I've never really heard share any story, shared the most touching of stories. Some stories I had forgotten. When it was my mom's turn, she had Christmas past and shared about how one year as a single mom she couldn't afford a Christmas tree for my brother and I. I was working at the Dairy Queen, and she said one night before Christmas I knocked on the back door, she opened it, and there I was with a Christmas tree I bought for us. She said that was the year I saved Christmas. I had forgotten too, that one year many Christmases back, my father-in-law had written each of us a letter asking about our salvation. He had "Christmas future" beside the number he drew, and he shared again how it was his prayer that each of his children and grandchildren would be born again so that he would be with them for all Christmases in eternity.
After everyone shared their Christmas past, present, and future story, they could open the ornament from in the bag with their name on it and hang their ornament on my "family tree" while I read a letter to them that would be their gift from me, that shared why I chose that ornament for them. It was such a sweet time of lifting each other up.
My brother and his wife - the "Holiday Hug" Raggedy Ann and Andy ornament to symbolize their triumph over a rocky start to their marriage.
Perhaps the perfect ending was this last ornament. "A Charlie Brown Christmas" ornament that to the person it represented, represented the simplicity with which they live their life. That person has little money, few things, and whose clothes he possesses could probably all fit in one suitcase. That person whether they knew it or not, taught me how you don't need things. He has done well with only the few things he has. I want to be like that. I want Christmas to be that. Back to the basics. Old Fashioned. People sharing stories, not always presents. Memories being made, legacies being solidified in the stories told.
I thank Brandon for perhaps being the Angel God used to impress the Old Fashioned Christmas desire in me. When there are no gifts to give the child who knows not what a gift is, as the Drummer Boy sings in that beloved Christmas song --- you simply give of yourself.
"And the Grinch, with his Grinch-feet ice cold in the snow, stood puzzling and puzzling, how could it be so? It came without ribbons. It came without tags. It came without packages, boxes or bags. And he puzzled and puzzled 'till his puzzler was sore. Then the Grinch thought of something he hadn't before. What if Christmas, he thought, doesn't come from a store. What if Christmas, perhaps, means a little bit more.”
|And then... a few days after we did our "Old Fashioned Christmas" - Team Guppy 1.0 went out and came back with this cross ornament and a sweet letter to me - so that I could be part of the family tree as well.........|