Part Two

Our appointment finally came. I was not the basket case I had been, but I was very nervous. We saw Dr. Morquendez in Iowa City. He diagnosed Ben with PVNS...a fairly rare disease of the joint lining. They decided it would be in Ben's best interest to do surgery. (*panic mode*) The surgery would basically be going in and 'cleaning up' the over growth of tissue surrounding his knee. Now, I realize this is not what it could have been, and thankfully they had stopped using the words 'cancer' and 'tumor'. But, what can I say. I'm a mommy. The thought of someone taking a knife to my baby freaked me out. But like I said, I was very thankful that it was no longer as scary as it could have been! Surgery day came, and it took longer than the doctor told us it would. But, he was pretty confident that he had achieved his goal. Poor Ben did not come out of the anesthesia very well...he threw up for quite awhile in recovery, but we got him in the car. snuggled him up in the back seat, and much to our relief he slept the whole way home. I can't remember how long he was out of school, a week, maybe? And when he went back, I will always remember how kind Mrs. Walker was to him, and very sweet letting him keep his leg up on a pillow...she took very good care of him, and of course, when someone is kind to your child, you hold a special place in your heart for that person. My heart is pretty big, because there have been so many people who have helped us along our way!! I will never forget, when Ben was still home, Mrs. Walker stopped over to give Ben his homework. Tom Isebrands was picking up his kids from daycare, and we were visiting when she walked in. She was, in her way, firmly telling Ben he needed to keep up on his homework, and she looked at Tom and she said, "Tom, tell this boy who I am!" And to look at Tom you would have thought he had reverted back to a little six year old boy, the look on his face was priceless. He said, "Ben, this is Mrs. Walker. My first grade teacher." Ben's jaw hit the floor. It was so funny!! After they left Ben looked at me and said, "How OLD IS SHE????"

Meanwhile, things were becoming very...interesting with Levi. My little 'quirky' 'meticulous' little guy was not quite hitting his milestones. He didn't have a lot of speech...he never called me "Mom"...and there were just so many things he did that often had me scratching my head. Now, I would like to give myself an 'out' by saying, maybe I was just too close to the situation to really see what was going on. He used to quote books I had read to him, and when he stopped, he wanted me to take over where he left off. I can't tell you how many books I memorized just so that I could do what he wanted. I liked it because he was talking, but it was never really a conversation...but it became the way we communicated. From the story he was reciting, he was able to tell me what he wanted. I'm not sure how I ever figured that out, but I did, and it worked for us. I was still in this bubble of thinking, he's so cute and unique!! (that is still true...but there was a lot more I should have been thinking. I blame the fact that I used to be blonde. Just let me have this one.)

One day, I was picking up the house after daycare. I had some flashcards. I dropped them on the floor. This, my friends, was my official Rain Man moment. Levi started helping me pick up the cards, handing them to me, telling me what was on them. These were letter flash cards, and he was handing them to me, saying, S. K. M. H. P. They weren't in order...he just knew them. Now, keep in mind, that he really did not communicate like this at all. My first thought, instead of wow! He's so smart! was, oh crap. This is almost like Autism. That weekend was Memorial Day weekend, and we went to Cutty's Campground with the Greenfields like we always did. I took the flashcards to show my sister in law, Dawn, and my mother in law, Judy, what he could do. I said the words out loud. "It's almost like Autism.." Dawn and Judy exchanged a glance, and Dawn said, "I'm so glad you said that!!!" Here, they had thought it for some time...and bonehead me...clueless! I was actually hurt, that they had thought it and had never said it. Really hurt...and when I got home, I called my mom and I told her about it, and she said, 'I wondered.." here she had been thinking it too! I was completely devastated that none of them had ever said anything to me! Then I kind of thought about it. How the heck would you tell someone that? I totally understand why they didn't say anything, what a hard situation. In their situation, I would have kept my mouth shut, too. And honestly, looking back, that's how it needed to happen. I needed to be slapped up side the head with it, and the flash card incident was perfect. So, I called Staci Thompson, to see if she knew who I should contact, and she got me the number of the AEA. They came and interviewed us, and observed Levi, and within minutes, they knew. In fact, they were kind of amazed at how 'text book' his behavior was. Classic Autism. Go big or go home, right? Way to go, Levi!

Next step, Iowa City. Center of Disability and Development. Levi was so scared. And we had to see a lot of people. Now, at this time, he was afraid of doors. And elevators. I wish I knew why. But he cried, pretty much the entire day. It was hell. My sister, Cathy went with us, and she can tell you just how awful that day was. That's all I have to say about that.

Then, we got him signed up for school. He started DLC on his third birthday. I was NOT ready to send him out into the world! I was scared for him, because he had so many fears, and no one knew him, and would they know what to do with him? Would they be able to understand what he needed?? This is when my faith came in handy, again...I had to let go, trust that God was watching him, and trust in the teachers. It was not easy. But, Mrs. Sloan was amazing. I liked her instantly, and she took very good care of my little boy.

Meanwhile, we noticed Ben's knee was swelling up again. After some back and forths with a couple of different doctors, they decided that we needed to take Ben to a Pediatric Rheumatologist. Enter one Doctor Polly Ferguson. Funny, as we were so focused on his knee, we didn't notice his ankle was huge, too! (another fine moment for me...) Turns out Ben was suffering from JRA. (Juvenile Rheumatoid Arthritis) We've been with Dr. Ferguson for ten years. About every three to four months, we had to take him to Iowa City. He was on several different medications, and sometimes they worked, and kept the swelling down, and sometimes they didn't, and we had to try different doses, different medications...at times it was okay, at times it was frustrating, but it wasn't life threatening, just life altering. And I could deal with life altering.

One day, Ben started complaining about his back hurting. I thought it was probably because his backpack was just too heavy for him...it was kind of ridiculous! I could barely lift the thing! It kept getting worse, so back to the doctor we went. After some x rays, Ben got a new diagnosis. Spondylolisthesis. A small fracture in his spine. Some people can live their whole lives with this and never know they even have it, but not Ben! He ended up in a back brace he had to wear for eight weeks. He could take it off to sleep. He hated that thing. I didn't blame him, it looked like a corset. I talked to the school and they agreed to let Ben keep a set of books at home so he would not have to carry a heavy backpack, so that was very nice! Eventually that pain went away, and although he will always have that little fracture, it doesn't seem to bother him too much these days. Definitely a blessing!
(End of Part 2)