The past 4 months have been a time of uncertainty for me. I am exhausted. I am overwhelmed. At first, I was overwhelmed trying to figure out the next step with Greysen's treatment plan. After months of researching and weighing the pro's and con's I came to the conclusion that the appendicostomy would be the best next step for him. This was not an easy decision for me because it basically means he will have a stoma again... much smaller than his colostomy but none the less a stoma. Can I just say something? Scheduling a surgery in another state is not easy! I don't even know how to explain this but here is an example: When Greysen had to get his first surgery in Denver we were told he would just need one surgery. His doctor sent the referral and I spoke with the nurse in Denver. Everything was set to go and 2 weeks before his surgery we received his welcome packet with details of his surgery. The description of his surgery? Colostomy. Ummmm....we were never told he was getting a colostomy. You can imagine the look of horror on my face. I actually laughed when I read it aloud to Kyle and said, "Obviously they mixed up his packet with someone else's." I called the nurse in Denver to tell them of their mistake. Instead she informed that it was not a mistake and in fact he would be getting a colostomy. She also informed me that he would need to return 3 months later for a second surgery. This is kind of a big deal to hear this two weeks before surgery. As if I wasn't stressed enough about the cost of travelling for one surgery now we had to travel for a second one. And that meant I had to find sitters twice for the kids for at least a week each time. Its stressful for me! I know in the end it will all work out but that doesn't make it less stressful!
As if I wasn't overwhelmed enough with Greysen's stuff we've been realizing some things about our 3 year old Benley. After we moved to Big Timber last July we noticed a huge change in Benley's behavior. It became very difficult for him to function (properly) at church and around his peers. At home he was waking up 5-6 times per night after taking 2-3 hours to even fall asleep. He has always been a "difficult" child but it became apparent that he wasn't learning from any form of discipline. He has always been a sweet boy but yet he would walk up and kick people for no apparent reason. It never made sense to me because I never felt like he was doing it to purposely hurt someone. The more he interacted with our 22 month old Maddie the more we saw behaviors that didn't seem normal and Maddie was quickly passing him up in certain areas of development. This last December it got to the point where we couldn't handle it anymore. We weren't getting any sleep, Ben would have meltdowns that lasted 45 minutes, and we were at a loss of what to do. I started putting together some of his "strange" symptoms that, by themselves, didn't seem like a big deal. I came to the conclusion that Ben had a sensory processing disorder. I called and made an appointment with his pediatrician but they could't see him until February.
February finally came and we were able to speak with Ben's Doctor. He was actually VERY concerned about his behavior and wanted us to see another doctor as soon as possible. We left feeling very concerned and anxious. The soonest appointment with the specialist wasn't until the end of March! We prayed that God would give us answers sooner because we felt like our life had stopped. It's hard to move forward with something when all you have are questions and no answers. A week later the nurse called and said they had a cancellation and asked if we could come the next day! We dropped everything and made our way to Billings the next day. We went into the appointment expecting her to see some concerns then refer us to an evaluation clinic called "Full-Circle" for a diagnosis. Instead she gave us a diagnosis right then and there and it literally knocked the wind out of us:
The next month while we waited for Ben's evaluation for an "official" diagnosis (which wasn't until March 31st) we did a lot of researching and reading. When you hear the word "Autism" you automatically make certain assumptions (which I am sure you are doing right now as you read this.) We wanted to fully understand his diagnosis because, in all honesty, we didn't fully understand what Autism was. Before you tell me that you don't think my son has Autism or you "don't see it" I would ask that you would research High-functioning Autism and fully understand what it is. Also, if someone says they have cancer do you respond with "I just don't see it". No. Unless you live with someone that has Autism I don't think you can fully comprehend the daily struggle and what Autism "looks" like. Its different for every child and that's why it's called an Autism SPECTRUM disorder. Here is a link that explains it a little better
About a week after Ben's diagnosis we received yet another (answer to prayer) call that the Clinic had a cancellation and, "Could we come the very next day??!!!" Again, we dropped everything and headed to Billings that night because his appointment was at 8am the next day. I was so anxious and barely slept that night. Even tho the Doctor had already diagnosed him, part of me wondered if there was a chance she was wrong. Have you ever tried to make a decision, only to go back and forth about it until someone or somehow the answer is so obvious its no longer a question. Well about 5 minutes into Ben's evaluation with the 3 specialists, Kyle turns to me and says, "I think its pretty obvious we have an autistic son." And he was right. As of right now he has moderate Autism but with lots of therapy and PRAYER we hope to get him to a point of being mild. After the last few months of processing all of this I think we have finally come to the place of acceptance. It's hard to accept that ONE of your children has medical needs and now we have TWO! Someone said to me the otherday, "Wow the Lord must think you are really special to be able to handle this!" I couldn't disagree more. The Lord knows that "I" cannot handle this but he knows that HE can handle this....When I am weak, HE is strong!
We appreciate all the people that have been praying for us and helping us out! Please continue to pray for us as we navigate through speech therapy, occupational therapy, surgery and daily life!!!
