Monday, November 18, 2013

This is Autism Flashblog Submission

I made these months ago, but they seemed perfect for the flashblog. You can click the pictures to enlarge.

My perfect sons.

This is Autism.




Check out all the entries to the flashblog at http://thisisautismflashblog.blogspot.com/


Thursday, November 14, 2013

One Year

Today is a very special day. A very important day. Exactly one year ago at this very moment, I was anxiously waiting in the waiting room of Saint Mary's Medical Center in San Francisco as my husband was undergoing weight loss surgery. This was no ordinary weight loss procedure. This was a very extreme procedure called the Duodenal Switch. It is a procedure that is only done by a handful of doctors in the US. Along with reducing the stomach size, the surgeon also shortened the intestinal tract, removed the gall bladder, repaired a hernia, and biopsied the liver. It was a 4.5 hour surgery that ended up being 7 terrifying hours of my life. As each minute passed beyond the expected 4.5 to 5 hour time frame, I became more and more scared. Scared that my husband wouldn't wake up. Afraid there was some sort of complication. It was something that needed to be done, but that didn't make it less scary. 

When the doctor finally came to tell me he was in recovery I must have breathed the biggest sigh of relief the people in the next building could hear. Seeing my worry on my face, he made an exception and allowed me to come into the recovery room for a couple minutes just to see for myself that he was fine. Bryan was so out of it. He had been under for so long, that it was hard to wake him up. He told me later that he remembered hearing my voice and he knew at that moment that he was still alive and it was all OK. Of course to him, the surgery felt like a blink of the eye, but to me.....let's just say it took a few years off my life. 


The recovery process began and I can say without reservation that it was the most difficult 4 months of Bryan's life. The first month was sheer torture. There were even a couple moments where in his weakness and pain of it all he questioned if he made the right choice. He was so miserable. With the years of research we had done, we knew that recovery would be difficult, but you really have no idea until you are in it. Every smell made him gag. Eating was a chore that he had no desire to do. His gag reflex was unbelievable. He lost 50lbs in the first 3 weeks. He was dehydrated from having such a small stomach that couldn't fit food and water in it at the same time. His meals for the first month were a teaspoon of food at a time. That's it. Sound extreme? It was. 

His sutures were having trouble healing. It ended up he was allergic to the stitches and I had to remove them and pack his wounds twice a day for 12 weeks until they closed. He was off work for 2.5 months, and probably could have stood to have been home even longer, but he was able to slowly get back into daily routine. Finally at 4 months post surgery he began to feel like himself again. Oh, and did I mention that the day of his surgery was the same day I pulled Andrew out of his school? He was home for 4.5 months while we fought the district and waited for a spot to open up at the school of our choice. It was a very difficult time for all of us. But the rewards made it all worth it.

I have never been so proud of my husband. He made a choice. The bravest and most selfless choice. And he gave me the greatest gift of all. Him. Many more years of being with the most amazing man I have ever met. He gave his children the gift of being able to play more with them, and do things with them that he hadn't been able to do before. I don't have to worry about loosing him too soon due to poor health. He is the healthiest and the happiest he has ever been. He made a tremendous sacrifice.  He will have major food restrictions, and will have to take supplements every 4 hours for the rest of his life. He gave up his addiction to food so that he can be a better husband and father. So that he can live the life that he always wanted to live but was unable to attain. He took the hard road. Loosing weight on your own is hard, and doing it the way he did is just as difficult. I believe it is even harder. It is drastic. He took away his own freedom and comfort. And I have never been more proud and amazed by him. To date he has lost 165 lbs, which is no less that inspiring!

We both have struggled with addiction and struggled to overcome it. On my one year anniversary of sobriety, Bryan got me a gift. A ring. To remind me of the decision I made, and to celebrate my success. And last night I did the same. 


The front of the dog tag holds a Phoenix. The Phoenix holds great meaning for Bryan as it symbolizes new life and being reborn from the ashes of your old life. 


I had the back inscribed with the words "My chains are gone, I've been set free" and the date of his surgery. He chose to leave his old life behind and start a new path the day he walked through those hospital doors. And I want him to remember how strong he is and the person he has become because of it.

Last night I had the privilege of attending his support group with many others who have had and are waiting to have this surgery. I was able to sit beside my husband with our 2 kids on his one year anniversary of his new life and speak to the group about how truly proud I am of him. How his decision to have the surgery changed the course of all of our lives. It was an honor to be able to stand in that place, in that same cafeteria where I sat nervously a year ago waiting for him to come out of surgery, and share just how amazing my husband is. It was a night we will never forget. 

It was a crazy year full of so many changes. Bryan's surgery, fighting for a proper placement for Drew, and in the middle of it all, James was diagnosed with Autism as well. I can't believe I survived it. :) But I wouldn't change any of it. We are all on the path that we are supposed to be on, and I know that we will grow and thrive on our new journeys together.

Friday, November 8, 2013

The Tribe

Today was the fifth time in the last 2 months that someone from AT&T had to come out to work on our Internet issues. It has been a constant and annoying battle that has taken up way too much of my time. The last straw was Wednesday night when we needed to update the iPads to the new ios and it took over 4 hours to download the update. For each iPad. Unacceptable when you have a child who uses the iPad for their basic daily functions....like communication.

Needless to say I wasn't very optimistic when the first guy at 9am spent 10 minutes looking around and said he couldn't find the issue and had to call another tech to come look. Surprisingly though, the next technician came within a half hour. He asked me the usual questions so I went through the last 3 months of issues for him. He was nice enough and listened to my frustrated annoyance, with that "I've heard this before", "calm down" look on his face. He went out to his truck for a few minutes, and when he returned he asked me if I worked with someone with Autism. He must have seen my Autism Awareness sticker on the back of my ugly, gold swagger wagon. I proceeded to tell him about my boys. 

Immediately his face and demeanor changed. He went from a look of "just another call, couldn't care less" to THE look. You know the one I mean. Not the "I'm so sorry" look, or the look of fear. But the "I totally get it" look of admiration and first hand understanding of our situation. The look that you only get from another parent who is walking a similar path. All of a sudden, I wasn't just another annoying customer out to ruin his day. I was special. I was part of the tribe.

He told me that he is the father of 3 kids on the spectrum. His oldest is 20 years old, and his youngest is 9. That is all he had to say. We shared a moment. The kind of moment where you just look into the person's eyes and you know everything they want to say. An unspoken connection. He told me that he was going to give another tech the rest of his appointments, and make my house his last of the day so that he could have plenty of time to fix the issue that four other techs before him couldn't. He proceeded to spend almost 5 hours working on the problem. And true to his word, he did find the source of the problem and fixed it before his shift ended. 

Autism is hard. It has been a learning and growing experience for the last 7.5 years. I must say though, that the people that I have met through this process have made it so much better. What happened today isn't out of the ordinary. There seems to be an instant acceptance within our tribe. Not 100% of the time of course. But more often than not, when I meet someone with a loved one on the spectrum, there is an instant bond. Whether it is someone I meet during my trip to the grocery store, or the people I have connected with through my Facebook page or my blog, there is a real sense that we have each others back. Most times we exchange contact info and helpful information that we have learned. And even if we never see each other again, there is a level of respect and acceptance exchanged that is unparalleled. 

It is these moments, these connections, that get me through the toughest of days. They help me remember I am not alone, and give me faith in humanity when the world can be so judgmental. My tribe is my safe place to be who I am in any given moment. I can share the ups and downs of our situation and be met with countless others who understand and are there to offer support and kind words. Many of you live online and our paths will never pass in the real world, but your impact on my life and my ability to get through the tough days is monumental.

You are my tribe, and I am grateful.