Gluten-Free Bagels, Keeping Records, and Ghost Boy by Martin Pistorius

One of my friends has been encouraging me to write more, and although privacy is really important to me, in looking back over the progress we've made in the past few years, I'm really glad that I kept a record of when things were *really* tough and how the Lord sustained me. Mormons are encouraged to keep journals and the Book of Mormon is a record that was kept with great sacrifice and difficulty, since the ancient prophet-writers of the book were commanded by God to engrave His sacred word on gold plates that they needed to make themselves. I'm really compelled by these words of the prophet Jacob:

"Now behold, it came to pass that I, Jacob, having ministered much unto my people in word, (and I cannot write but a little of my words, because of the difficulty of engraving our words upon plates) and we know that the things which we write upon plates must remain; But whatsoever things we write upon anything save it be upon plates must perish and vanish away; but we can write a few words upon plates, which will give our children, and also our beloved brethren, a small degree of knowledge concerning us, or concerning their fathers—Now in this thing we do rejoice; and we labor diligently to engraven these words upon plates, hoping that our beloved brethren and our children will receive them with thankful hearts, and look upon them that they may learn with joy and not with sorrow, neither with contempt, concerning their first parents. For, for this intent have we written these things, that they may know that we knew of Christ, and we had a hope of his glory many hundred years before his coming; and not only we ourselves had a hope of his glory, but also all the holy prophets which were before us." Book of Mormon, Jacob 4:1-4

I feel like no time has passed and they are speaking directly to me.

So here we are, January 2015, and I've been spending a lot more time on sharing essential oils and helping others than desperately trying to get my son better. I'm consistently cooking and feeding him his special diet, giving him his supplements and oils, taking care of myself, improving the diet of the rest of the family, and balancing his care with other interests. I'm also allowing other people to help me. I think I'm doing a great job of taking care of my own mental health, which is so key when you are on the marathon (not a sprint!) that is special-needs parenting. The greatest blessing of him being at this stage of recovery is that we have a relationship with our son! He smiles and giggles and snuggles! This makes everything else worth the physical work that goes with caring for a teenager who is 5'6" and still growing, but is not toilet-trained. 

But I feel a lot of guilt for him not being "further along". He's HUGE. We have to double-diaper him in large adult diapers. He had to be anesthetized to have some dental work done recently and the anesthesia is not covered by insurance. If I could only muster up the strength and patience to do a better job of brushing his teeth. My husband and I are in middle-age and we are not going to be able to care for him forever. I still see progress in him and I believe in autism recovery, but I'm tired of appointments and therapies and what we are doing right now is what I can handle. I want someone else to toilet-train him and train him to do other independence skills. Better yet, I want him to start functionally communicating on his own and showing a desire to toilet-train himself. I just want to love him and cook for him.

Discovering the book Ghost Boy by Martin Pistorius was just what I needed to inspire me to keep going! I read it with tears running down my face. It is about a boy who was typical and intelligent but was struck with an illness that left him mentally comatose although still physically "awake", who started to wake up around age fourteen but couldn't talk or move his body enough to let anyone know. Finally one caregiver, who happened to give him weekly essential oil massages (!!!!!!!!), recognized his subtle efforts to communicate (eye movements, slight lifts of fingers, and smiles) and helped him get communication devices that allowed him to show that he was of very high intelligence. My son, who is going to be thirteen next month, and is nonverbal and functions at the level of a toddler, has been "waking up" since we started using oils. Tears flowed because this book could have been written by my son. I was so moved by the feelings of indignity and not being seen or understood that the author describes, as well as how much he craved being with his family and being read to. After a while I put the book down and snuggled with my son and read several books to him. This is a book full of HOPE and allows me to see the possibilities in my son. His parents didn't give up on him and this example gives me a boost of strength. It is also a very easy read. I am so grateful for pioneers like Martin Pistorius who remind us who is inside our kids! 

I learned so many things from this book! His dad always believed he would recover, even though his physical state was far more challenged than my son's. His warrior-mom put countless hours into his development. This is causing me to be more imaginative about what my son might be thinking, and look for more clues in his physical movements and sounds.

So how do I connect gluten-free bagels with Ghost Boy?

When I started on my son's recovery journey, one of the first things I was advised to do to heal his gut was to remove gluten from his diet. He doesn't eat sugar or baked goods but after a while I decided to see if I could make gluten-free versions of some things that I love to bake and eat, and eventually decided to go gluten-free myself. I spent months a while ago figuring out how to make really good gluten-free cookies with coconut oil instead of butter, and gave up several times, thinking there was no way to make them just as good. Then I would try again and I finally did it! (See recipe in the Recipes tab of this blog.) But I have never made gluten-free bread that I was the least bit satisfied with. I had this thought one day: "There MUST be a simple way to make gluten-free bread that is really good, and I know God knows the answer." I saw in my mind's eye this great open, wondrous field of possibilities, and I knew that the key to my yummy gluten-free bagels was out there. Last week while I was exercising, it popped into my head to make the bagel recipe from the back of the Pamela's gluten-free flour bag but substitute some tapioca flour (it's very chewy and stretchy, as in the wonderful Brazilian cheese bread) and add some baking powder (yeast doesn't seem to do the whole job with gluten-free flour for me). The bagels were AMAZING, good enough for my gluten-free taste-tester friends and most of all good enough for me. I ate 3-4 in one day. 

I had been feeling down that day and I know that God gave me that inspiration on that specific day because he knew that I needed to create something (the most powerful way for me to feel better) and have it be successful. He gave me the gift of the secret to yummy gluten-free bagels.

Yesterday morning on the way to church, thinking about the Martin Pistorius book and my son, I saw in my mind's eye a world of possibilities and had the SAME feeling as I did about the bagels! It was the same magical field that held the bagel-baking secret! "God knows how to help my son."

I had believed that because he is almost thirteen and still not talking and still in diapers, that we are stuck here and will be in the same place when he is twenty. But look how far we've come in three years! And Martin was twenty-two when someone first noticed that he was trying to communicate! He taught himself to read at age twenty-eight, and married in his thirties!

I am so grateful for the gifts of VISION, HOPE, and POSSIBILITY that have been given to me, this January 2015.