Some of the Tests are in

As many of you know John had his big appointment in May. Well, they called me with some of the results and they are pretty bad. We can't get the FDA to approve the trial meds. All of John's levels are too high. July 7th I will be talking to John's doctor about seeing a nephrologist. His kidneys are getting worse. We will probably try meds first but his doctor says dialysis will probably be in our future. I am more than a little bummed about this but we will make it work. We always do.

Sticks and Stones and New Shoes

I am horrible at keeping up with my blog. Well, if I had time to type I would have time to work out, have a hobby etc. and that sure isn't happening. Since our issues with VBS he had a rough week. We had a bunch of seizures on Thursday morning. I will tell you it is not a good morning when you wake up at 430 to your child having a seizure. He continued to have them until about 930. That made for a long day even after the seizures.

On Friday I decided to take the kids to the zoo. Three kids, one adult, and a bunch of wild animals I must be insane. On the bright side I didn't lose any! John loves the zoo but since his sensory issues are back in full force it made life interesting and brought the worst out in some rude folks. Everytime we would go up to an exhibit there would be no one there as soon as a group of people would walk up John would have a meltdown. We have contiued to have these issues since the zoo as well.

Monday the 7th of June John and I made our treck to Lexington to recieve his AFOs. He is doing pretty good in them. Due to his weight we are having issues with bruising and pressure sores. Thankfully he can walk in them. He had a rough start at first now it is second nature.

Make a Wish Pictures

Things that People Dont Tell You

People tell you a lot of stuff when you become a parent of a special needs child. They tell you that it will be ok. They say it is God's will. They comment that God chose you to be your child's parent. While all of these are true except the everything will be ok part there is a bunch of stuff friends, family, doctors, and even other parents of special needs leave out. First thing first; It is never ok. You have a different level of ok but it is never the same level as it once was. You will never hear anyone say "That sucks." I believe that is the most honest thing someone could say. No it isn't designed to make you feel better but it is true. It isn't said to feel sorry for someone or to roll in pity. There is just no other way to say it.

Someone once told me that you mourn twice once when you realize that something is wrong with your child and once when you child goes to heaven. They left out the part in between. Where there is a lot of joy and triumphs there is a lot of tears along the way. You cry every time when you realize your child is missing out on wonderful opportunities in their lives. I mourned when I realized John isn't playing T-ball like others his age. I mourned when I got a nice dose of reality on what an "average" kindergartener can do. I mourned when I realized last night John can't handle the stimulation of VBS. Then you have all the medical stuff like treatments not working, clubfeet coming back, sensory issues resurfacing, IEPs that tell you how far behind your child really is, and therapies that end with both of you in tears.

Thankfully these things aren't usually back to back. They come with just enough distance for me to refocus on what is really important. John is happy. John is here. John makes progress just in his time. All this other stuff is just that stuff. I know that John wanted to go to VBS. Last night as we were getting ready to go I asked him if he was going to learn about God. He put his hands together like he was praying. He knew. I know that people may think he doesn't understand but I know he does.

The most important thing people don't tell you is how many life lessons these little angels will teach you.  Last night after we got home John saw I was crying and he came over and ran his finger down from his eye to his cheek. After everything he goes through he still had the compassion for someone else. How often do we take time from our on personal struggles to show compassion for someone else?  I know I care for my family and friends but how many other people need compassion that I just pass by each day. Thank you God for letting John remind me to take time to care for others. Please open my eyes to those in need of a kind word or a helping hand.

When A Book Isn't Just a Book

Tonight as I was reading our bedtime book which turned into four books :) it amazes me that a kids book can bring you to tears. We have a few that do that. Tonight we read The Tiniest Snowflake. It is about a tiny snowflake who doesn't want to be different and how each snowflake serves a purpose. We received the book before we even knew John had any issues. He and Sam serve such a purpose in this life. Even though John is different from all of our friends children. He does serve a purpose. God has a plan for all of us. I just pray that Todd and I can instill that pride in John and make sure he knows how special he is. The other book we read is The Littlest Angel. When I read it to him while I was carrying him I never realized that it would be anything other than a cute story. As we are faced with John's mortality it makes it difficult to read the book. But he loves it so we do. Thank you God for allowing Sam to be healthy and thank you for allowing us one more day with John.