Light Shines Through

Autism has made life complicated. Autism has redirected our life journey and, well if I’m honest, Autism obliterated my heart, my faith, hope, and all I thought to be true of God, of medicine, of our world. Autism is hard, crushing and dark, but within that, there are moments of light. There are sparks and there are flames and then sometimes, just sometimes there is a break thru that puts a piece of my heart, my soul back together; a light so bright that I feel joy and hope and beauty, real beauty that can only stem from God’s goodness….God’s love and goodness displayed because of others’ passion to work with our son and our family.

When our Logan was diagnosed with autism, well, PDD-NOS (now, a “spectrum kid”), we were told to “lock Logan in his room. Tie up his furniture…he is a danger to himself and to others….if you can train a dog with a squirt gun, you can train your son the same….go on dates with your husband, you will most likely get divorced….don’t speak of your son with your spouse on these dates….your son doesn’t feel like us…he won’t love and doesn’t know love…start saving for a place for him…..” All this from the “best” child psychologist in Jacksonville.

We started this journey surrounded in darkness, but light has found its way through. Brightness first worked its way into our dark and fear-filled hearts with Dr. Kartzinel and Dr. Buckley and their functional medicine practice and holistic approach helping to restore Logan’s health, body and mind with an appropriate diet and nutritional supplementation….a piece of hope restored.

A piece of my heart repaired as our son was embraced and fully accepted by the Jewish Community Alliance for preschool: our non-verbal, autistic boy using sign language joyfully included amongst typical peers! His therapists (Merrill, Amanda, Kim, Matt, Allison, Lisa, Susan) became our family, our friends, our support, our healers for our Logan and our hearts, and aided our family as it grew…pieces my heart restored, hope renewed.

Dearest friends of mine from church showed me I was not alone over and over and over again through kind words, prayer, time, acceptance, and love in action…. a bit of faith restored. School teachers at the Keystone Academy ignited hope in me that our son was smart and very capable when taught in a way he could learn. Then came Dr. O and her breakthrough in finding some hidden bacteria, viruses, parasites, and Lyme… a piece of my trust in medicine, healed.

More recent, Fun family opportunities provided to us by Dreams Come True has humbled my healing heart as we have been showered in gifts from anonymous people in our community rebuilding my faith in a compassionate world.

And now,  North Florida School of Special Education… truly the teachers and staff at this school are completing the restoration project…. Of our son, of me.

God has used some incredible people to shine light into our darkness over the past 10 years.

Pieces of the “Puzzle”… hmmm…perhaps that autism puzzle is not just an image of autism within our son, but also of putting back together the pieces of my heart, mind, faith, ideals, hope… that have been thrown all to hell since our diagnosis in 2007. And as I sit here through the tears, I can see that happening. It is all so very slow, and honestly, painful, as the pieces of this puzzle, my puzzle, must have gotten extremely bent and warped over the years; God working through others is somehow putting back the pieces of my heart, my faith, hope and trust. And, at least in this moment, it feels promising.

I have had a couple incredible experiences in the last three days that have brought all this thought, emotion, and images in my mind to cause a flood of words onto the keyboard… and here is a glimpse of one...

I have had the privilege of helping to encourage students with special needs to run with the North Florida School Of Special Education running program, under the leadership of a very enthusiastic and inspiring team coach -Mr. Sontag (the school’s music teacher) and kind, steady, supportive co-coach Amy (the school’s culinary teacher). For weeks, I have trained alongside our son Logan running lap after lap on their small track. Each week I cherished that time with him. It was real. He was alive and present and we were sharing in a passion of mine. I was sharing that passion with him. He was embracing it and growing in relationship with me while running, as well as in athleticism. Some days at practice, things felt just, well, so “typical”; I felt  just so free and light in spirit as we went 10,20,30,40 laps around this track together in preparation for our big race…I felt happy. I felt hopeful. I felt peace… I felt complete...joy.

Race day came last Saturday and I still cannot believe the outcome! Logan, our Logan,- our autistic, anxiety filled, PANDAS inflicted, Lyme Disease infected, OCD burdened, 12 year old son ran the ENTIRE 15K Gate River Run! The whole thing! Ran it! 9.3 miles! And he did it with a quickness, and lightness, and a smile on his face the entire time! I seriously wept as I crossed the finish line behind him, running at my own top pace. His goal was to run 6 miles of the long run (which I thought was pushing it), but he ran it ALL! He passed his goal for himself and mine. He asked to keep running. He wanted to keep pushing forward, and I got to experience that with him. I just cannot express how amazing this experience was. Never did I think I would share this running experience, this passion with him. I used to share my love of running with others’ sons when I coached cross country and track in my pre-mom life…. And now I was training with my own son! And he is amazingly, a natural runner. Talk about hope restored!  

My heart, my soul, my mind, my little world is being slowly renewed and repaired, because of others…because of God’s love in action created through the encouraging, passionate, and patient people He has placed on our path: like the teachers and therapists he has at North Florida School of Special Education, like Mr. (coach) Sontag; who create opportunity and hope where there once was none.

Pieces put together.

God shining through darkness.

Me...Finally noticing it...

Finally feeling it.

Disclaimer

"...And let us run with perseverance the race marked out for us." Hebrews 12:1

Twisted By Normal

I sit here in tears, conflicted in emotion, twisted in thought, and feel compelled to write, although I have no specific direction to head with this. I weep, why? Our oldest, autistic son has been staying with his grandparents these past two days…

For two days, we have experienced “normal”. For two days, my mind has been able to complete a thought because I was not interrupted every 30 seconds. For two days, there have been moments of quiet within our home. For two days, we have smiled and laughed more than we have all week. We joined and easily fit into a new church homegroup with other families. We have been free to be. Free to think. Free to play. Our other two boys are calmer. Our other two boys listen to me and respond to me without intense reaction. The giggles, the smiles … precious. Our stress level is low. Our life is relaxed, almost tranquil; but there is an emptiness, attached with that, a painful, twisted reminder…Logan.

Now, that statement in itself makes me feel like a pile of crap. What mom attaches “painful and twisted” to her son? Who does that? Me, an autism mom. Me, a PANDAS mom. Me, a Lyme Disease mom. Me, a Babesia mom. Me, a tired, broken, broke, stressed out, worn out, lonely, sad mom. Me. I do.

I love Logan. He is loved by all of us. But it is a HARD love. It is a sacrificial love. It is an often times life-sucking love. I love Logan.

But I am broken; and soaked with tears, because these past two days have been a dream, a fairy tale version of the Godfrey family, at which I will wake up from at 6:00 PM, Today! And so, here I am in tears. Not wanting this version of us to end, twisted over it, and also missing our boy. Twisted and broken that God allows the pain, the heart ache, the illnesses, the lack of hope, the lack of healing, the stress to continue. I am broken in trust for doctors, I am broken in trust with relationships, including my relationship with God. More often than not jealousy, anger, and bitterness consume me over what others are blessed with and what our God has allowed to be taken from us.

How do I continue to praise my Almighty God. King of Kings. Lord of All. The Almighty Healer … when He doesn’t heal. He doesn’t heal He doesn't heal our son! He doesn't resurrect our family!  But I believe He can! And only He can. He can raise the dead! ... surely he can heal our son if He wants to. It is core of my faith! But He continues to not Heal our son. He permits hardship for our family. Building, growing hardship. I always try to recommit to hope. To trust. I want to. I do, but I am broken and guarded. One can only take so much pain. So much disappointment.

The grass is greener on the other side of Autism.

Typical …. Typical families. Their existence has to be so different then ours. I have nothing to go on except the past 2 days since Logan is our oldest. Atypical is all we know. But this temporary "typical", it was like a fresh breeze on a sunny beach day. Easy. Carefree. And all that is about to change, at 6:00.

I want to embrace Logan. I miss him. His brothers miss him. Michael's thoughts have Logan circling them ... We love Logan.

I am crazy, sitting here, crying, loving what is our temporary existence, missing what is reality, longing for better, trying to settle and be content with what is, fighting for it all to make sense! I have been called many things, some good, some bad… but crazy about somes it up. I am tired. Twisted with emotion. Broken by the twists, the conflicted heart. The heart that longs to find reason to hope. The heart that surrenders and begs for God’s healing. The heart that aches to be content with His plan. The heart that bleeds for normal.

until 6...

I love Logan. I want so much more for him than this life has to offer. So I will continue to hope ...pray ... endure the crazy I have become.

Press On & Persevere ...

After dropping the kiddos off at school today, I went out for my run. Typically I do this at 5AM, but my usual 4:45 wake up seemed too extreme for this Body Pumped soreness I am still feeling from Monday's class. So with an extra hour of sleep, breakfast, coffee ... by 8:30 it was go time!

It was a nice change running in the daylight (feel as though I have become a vampire runner these days), and as I approached my desired turn around point I chose not to turn around: I kept going; tired, hot, alone, I chose to keep pressing on this new route. Something inside of me said to keep running, to move forward ... there is more needed, it can be greater.

So what was the greater thing from my run? More calories burned, more sweat, enhanced training effect? I don't know ... perhaps this blog! (heehee) It was a good run though!!

Going passed my set turn back point on this run is such the metaphor for my life. Our life with Autism, PANDAS, food sensitivities, leaky gut, microbial invasion, autoimmune disease, MTHFR.... My husband and I so often define a stopping place of treatment for all this, and yet we consistently go beyond that turn around place. We keep moving our son, our family forward.

Life is hard with autism. Life is unbearable during a PANDAS flare. Life is often isolating and lonely with food allergies. Life is exhausting when one gives all they have financially, emotionally, physically, spiritually, and still the illness, the autism remains. Yet ... something inside says, "Press on ... Persevere ...Stay the course ... Victory is near".

Our journey with our son Logan has taken many different paths. A lot of times it just feels like a circle, but emotions aside ... it is a spiral. It can get mentally messy going around and around with different supplements, therapies, dietary adjustments, and treatment protocols, and it is that frazzled, exhausted state of being that makes me often want to just stop and turn around, turn away from it all. But I don't, we don't. Just like in my morning run, I press on, tired, exhausted, often alone ... I persevere for something greater. In this case ... for greater healing for our son.

Autism can bring one to very dark places but also bring some amazing triumphs. Those who rise victoriously from a battle, often look like they have been through hell, they've given their all not knowing the final outcome, but pressing on, persevering with hope for victory. Whether a boxer, football player, soldier, track athlete, cancer patient ... mom of an autistic boy ..  it holds true.

"PRESS ON and PERSEVERE" ...isn't that what we are ALL CALLED to do?" I think I am feeling driven today to encourage you "WARRIOR MOMS"  because we've had a rough few weeks battling a PANDAS flare in our home due to strep throat. As we emerge from this battle from the help of some amazing antibiotics, I am just more aware of our patterns of complete chaos followed by victory and hope so that perhaps that you too will find the strength to "PRESS ON and PERSEVERE" even though you may be worn thin. Victory from the battle must be close.

All this reminds me of a moment I shared in "OUR STORY" from THE AIR DIET, www.theairdiet.com/store :

"There have been times (many) when I have fallen to my knees, face to the floor, in grave devastation pleading with God to change things, to remove the pain in my bleeding heart, to heal our son, and restore some sense of normalcy in our family life. Once, to my surprise, I was brought out of one of these heart-wrenching prayers by a soft voice, Logan's voice, and as he looked at me weeping, he clearly said to me, "Never, never, never, give up." (THE AIR DIET, 2014, p. 183)

So whatever battle you are facing. What ever point you are at on your journey. PRESS ON and PERSEVERE and "Never, never, never, give up." Extend your turn around point and keep going!