Colored ribbons

When I say my boy is one in a million… I’m not too far off. In reading all that I can find online and trying to connect with others, it has been frustrating.

The numbers are this:
less than 200,00 in the US
1-9 in 1,000,000
Less than .5%
And since 75% of those affected are female, the boy is truly, 1(or three) in a million.

In a world full of support groups and colored ribbons it is tough to feel like in some ways you are forging a road less travelled. I am always one of an adventure, so I am trying to just go with that. This is just another BIG adventure that God has placed in our lives. And don’t think for one minute that God doesn’t know what he is doing. This is a story for the boy to share in his future. A story of overcoming, and beating the pants off of something. A story of faith and determination. As I go on in my musings, I will explain the other trials he has faced. The scars that people can’t see. There is a plan for him. A big huge ginormous one. And I am lucky that he calls me Mom.

Oh and, please, feel free to prove me wrong. If you know more than I do I ask that you come and walk beside me and give me help, advice and a colored ribbon.

edit: thanks to my nerdiness and one of my dear friends....
There is a ribbon! Purple and yellow. And May is AIH awareness month.

Unusual

I am a nerd when it comes to information. I love to learn and to have facts and figures. As I have been Googling, as I have now allowed myself to do, I have found very little in the way of non –medical jargon on AIH, that's what all the cool kids call auto immune hepatitis.
So to you dear reader, if you stumble upon this blog at some point because you or someone you love has AIH….please feel free to read along and ask questions! You will find I am a bit of an open book in life. Like embarrassing to family members open book.

So here is what I know. In two months since the boy was released from the hospital he is feeling much better. He still gets tuckered out fast, do people say tuckered out when talking about teenagers? Anywho, his spirits are high. Well as high as any 17 year old boy. ;) Others might not see it....but i do. :)

I think being the introverted solitary soul that he is has helped him, he is content to read a book alone with his music and text a friend. He doesn't need to be in the middle of the crowd and be the center of attention …..he abhors it. So being "weird" has its benefits. I have always told my boy....let your freak flag fly! Be who you are and proud of it.

This last week has done amazing things for both of us on the emotional side of life. Having an answer and knowing he is healing is such a weight lifting off your shoulders thing. There is a lot to be said for that balance of mind, body and spirit in life. I pray that this Mega sized life speed bump will be one that goes down in the books as a life learning or changing experience. For us both. I have told the boy that he is doing the world a disservice if he doesn't share his story when he is older. So much we can learn from each other!

AIH is a rare thing, affecting very few people in the good ole US of A. It does seem to like the girls more... but it doesn't discriminate, obviously. Usually it is found when routine blood work comes back a little wonky. The not so usual way… is like my boy. Complete multiple organ meltdown. Thankful to God that we caught the worst case early enough to keep him around.

Usually it takes months of testing to get a diagnosis and move forward with treatment, when they find it the usual way. OR… they throw everything but the kitchen sink at you in short order when the severity requires. Like with my boy.

So thankful for doctors who wouldn't give up, who didn't have egos and attitudes, who were comfortable in shrugging and saying we just don’t know but we will.

And then there was a diagnosis

Sometimes in life we fragile humans get to a place where we just have to say, I'm done! 

I have been there for about two weeks. I have given all my extra strength to my boy so he would have a full bucket. But I have been running dangerously low.

Then the liver dude called. I have been a ball of nerves on the verge of either throwing up or crying all day waiting for him to call back. I NEED him to call. NOW. I need to hear that we have something to go on. I need...I need. I need a nap.

After my second call to the office, saying I know I know but I'm a mom you have to forgive me.....he called me back. Maybe I was a little more crazy psycho when I called then I thought I was. But he called....so I got my way :)

There is a peace in labels. We can fight all we want but there can be comfort in knowing we are a part of something. A peace in saying I belong to something. Even if what that is sucks. 

My boy has been labeled. A diagnosis is complete. He is living with autoimmune hepatitis.

Now for some medical reference from across the interwebs.....

~~~Autoimmune Hepatitis, affects less than 200,000 people in the US population.

~~~About 70 percent of those with autoimmune hepatitis are female.

~~~The immune system mistakes a person's own cells as invaders and attacks them

~~~A person cannot catch the disease from someone else.

So where does that leave things? He is a special young man. Even more than I ever knew. God thinks he is so special he is getting blessed with this as well. And even though it sucks... it is a blessing. Have I mentioned yet that it sucks?

There is a peace in knowing what he is up against, what he will be facing in life. It sucks. And I wish I could take it away.....but now he knows, now we know and we start to fully move forward. Tomorrow he will have blood drawn again. Thursday we follow up and the next phase begins. So far.... he will be treated with daily medications. It may be for the rest of his life, it will probably be for the rest of his life. Once numbers get level it will be relative smooth sailing. The transplant list will wait, I hope that it will go away totally and I will never have to think of it again. And the itemized bill from the hospital showed up today. 

Oh and Wednesday is my dear boy's birthday. That is going to be an evening to remember of its own.....

Balancing Act

Today the boy and I visited a local college fair. We have been talking a lot lately about college. I don't like it at all even though I know it is an exciting rite of passage for him. I have such mixed feelings. I will miss him tremendously... like rubber rooms and white coats best be ready miss him. I am so excited for him to experience that time in his life. For him to be challenged and learn so many new things. There is a balance that I need to find in letting him go and holding myself together.

Most parents worry about their child partying and drinking at school because they can make stupid decisions. I worry that my boy will give in to the temptation  and hurt himself. His liver will never handle alcohol. It means his drinking days are over before they even started. That taste of champagne on new year's eve 8 years ago was his first and last. I pray he stays the strong, level headed old man in a young body that he has always been and remembers that life is a balance...sometimes you can break the rules, and sometimes you can't.

Not knowing what is wrong is pretty tiring. I know I have had more than one tearful break just because I fear. I am a gal of faith and I know that there is a story in this and he is under God's watchful eye ....but sometimes my faith buckles at the knees and I fear. This is a lot of crazy crap people. I don't think people around me get it. I'm sure i don't. I haven't asked the scary questions because i don't want the scary answers. The boy is always so tired. It worries me that he is missing out because he spends so much time in down time mode. We have to plan our outings in bursts. During the week you can forget about anything other than a school day. Except for Friday nights. That is football night, or in our family....marching band night! He pulls it together to be there because it means so much to him. Saturdays afterwards are usually pretty low key, again that balance.

I always used to say single moms were guaranteed angel wings. That was before I was one. Now I think all we want is a quiet day with nothing to worry about but a good long nap.