Acceptance

I feel like sometimes when you keep up with people through blogs and Facebook their life can seem like nothing but puppy dogs and rainbows. I know I have viewed people that way before when I simply keep up with them through social networks. This blog is used for Addison to have a baby book when she gets older. I, of course, want her to see the fun and exciting things that happen and not the struggles that we were going through at the same time those exciting things are happening. Plus, who wants to read about all that anyway?  I really debated writing this post, but then I thought about how I had also started this blog as an outlet for me to write and so I have decided to share our story with the blog world.

People have made the comment to me before that everything in our life seems perfect. While we are happy, yes, we do have some major things going on right now that I really just haven't wanted to share or talk about. I am in the process of dealing with and accepting some pretty major things pertaining to our daughter right now. When Addison was really sick and in the hospital I posted many pictures and asked for prayers knowing it was nothing but a bad virus that would eventually run its course. Then we ended up in the hospital the second time and it seemed less likely that Addison had a viral infection and that something else was going in in her little body that was a bit more serious. I stopped giving updates because it was too hard to talk about with everyone coming and going..I know everyone meant well and were concerned for our family because they love us, but the internal battle I am/was dealing with on what seems to be a minute by minute basis makes it hard to discuss with a happy face on over and over. Every time I would repeat the story it was like a knife being dug deeper into my side. It literally hurt to think about it and to even talk about it meant that I was constantly fighting tears, because Mommies and daddies are brave, right? So here it goes...the whole story so that everyone is completely filled in.

Basically they tested Addison for everything under the sun while we were at Kosair and they came up with the diagnosis that she had a form of juvenile arthritis. It's a very rare condition that can present itself in the form of a fever and a rash and can have associated joint pain. That was the first big blow. When you learn that your child, who you had thought was perfectly healthy has a pretty serious medical issue, it's not easy to deal with. I put on a brave face for my girl although I was scared to death, stayed up countless nights reading anything I could get my hands on about it so she could get the best care that was out there, gave Addison the medication the doctors had prescribed and went back to work after a prolonged absence. When I was alone I cried all the time. My baby was not herself, the steroids they put her on were changing her sleep habits and we, as was she, were exhausted. The steroids made her hungry all the time and she was gaining weight at a really fast rate. We were trying to work, trying to be brave, trying to make sure Addison got the best care that we and the doctors could provide, trying just to survive it felt like. I could go on and on but during that time something inside me just didn't feel right about it all. She met some if the criteria for JA, but not all. I don't care what anyone says, mothers have an intuition and 100% of the time so far mine has been dead on. One night I broke down and Mike and I talked about getting a second opinion and that's when we went to the University of Cincinnati.

They are great. They just have so much more technology, access to things and doctors in their practice who also research all the time. They examined Addison and said while they thought Kosair was close, they kind of "missed the boat." So they have tested Addison for another autoimmune disorder which is in the same line of conditions as juvenile arthritis. The most basic way I can describe it is it's a disorder in which her body produces too much protein. It can also present itself as a fever and a rash, which I guess made Kosair get a little twisted with their diagnosis. The blood work takes three months to come back to tell us if it is a for sure thing that this is what it is, but the doctors feel pretty confident they have the diagnosis correct. So right now we are playing the waiting game and I feel like it is consuming my every thought. I know you all know how I am with patiently waiting, so you can understand how crazy I feel inside.

If Addison does have this condition, she will need to have a shot everyday to help control the over abundance of protein in her body. They say that shot is pretty painful as the medicine is going in, but other than that there really aren't any other side effects. The shot will cause her immune system to be very low, so we will have to be extra careful with who she is around especially if they are catching a cold or something. I hate with everything in me that Addison is going to have to endure a shot everyday, but if that is what he have to do to keep her healthy, then that is what we have to do. If we don't give her this shot, the extra protein in her body could possibly lead to hearing loss and/or kidney damage. With the shot, she most likely won't have any hearing/kidney damage and she will lead a completely normal life. For that I am so thankful.

So right now I feel that there is this constant battle within me. She is going to live a normal life and I know that it could be SO much worse than what the doctors think is going on. At one point cancer was mentioned, so believe me, I know it could be worse. The only thing is that knowing it could be worse doesn't help me feel all the way better. Sometimes I just beg God to take it away because no one wants to have their child go through something they are not going to like. I know I don't want to give her a shot and hurt her. I don't understand the situation. I am mad about it and I am sad, really sad about it. I am trying so hard to be brave and put on a happy face but it doesn't work all the time. I know that someday the shot that we have to give her will be part of our everyday routine, it won't seem like a big deal and she will understand that she has to get it in order to make her feel better, but right now I am still accepting everything because it does seem like a big deal.

God is so good and I will continue to trust in his plan. I understand that God has a bigger plan for us than we can ever have for ourselves, but I am struggling with this concept. I don't know why God chose our little girl to have this, but I do know that he is faithful. My heart broken, but it is also working  constantly on accepting his plan for our family. Please continue to pray for us, we sure could use it. I do know one thing...I will do WHATEVER I have to do to make sure that Addison is happy and healthy. I fall deeper in love with my brave little girl every single second and I realize that her attitude is actually helping me to accept all of this. Gosh, she's amazing. I just want her to know that we will always do whatever we have to do to make sure she gets the best care that there is.

So friends, there it is. The good, the bad and the ugly. Thank you again for your prayers...God sure is doing great things in this little family of mine!