Wishes and hope

The new year is approaching fast! I can't believe how fast this year has gone! Just seems like summer ended and now we face the cold weather. For Brennan, the cold weather is not a good thing for him. His pain has been up and down. It seems like no pain meds have been touching him. There are days he comes home and crashes. He pushes himself to the point he wears himself out. These days we take it day by day anymore. I am counting down the days until our next appt. December 22nd we will be going over to Children's Hospital for a 2nd opinion for his Ehlers Danlos Syndrome. There is so much that goes on with Chiari/EDS that it is hard to explain.

These past few weeks Brennan has been busy. He was in a wedding at the beginning of December for a good friend of ours as one of her ring bearers. He looked so handsome that day!!! We got through his Christmas program. He was so nervous but he did so good! As we are wrapping some things in the holiday season, I have a few things I want to see happen in 2017.

My wish and hope for next year is that more people take the time to understand what goes on with people with Chiari and EDS. I can't tell you how many times I had to explain over and over and over about Brennan's diagnosis' to other people and those people look at me and "He is fine"... "He looks normal"... "He is not sick".... Let me tell you this... it is not what is on the outside... it is what is on the inside. He is mangled inside.  It is about advocating for Brennan and the Chiari/EDS community. To raise awareness about Chiari and EDS. Not much is known on both of them. Heck, when we were first diagnosed I never heard of both of them. I have done so much reading on both. That is how we have to educate our selves on this. Some doctors have no clue either. It is pretty bad when a hometown doctor has to google what Chiari is.

May is EDS awareness month and September is Chiari awareness month. It is important for parents of children with this along with people that suffer with these along with other things make people aware that these exist. I am so happy when I meet new parents that have a child with Chiari, EDS, ADHD, Sensory Processing Disorder, Oppositional Defiant Disorder and Adjustment Disorder. We get it!! We can feel normal!!! I get excited to meet adults that have this... we can relate.. talk.. cry... have a shoulder to lean on.

This has not been easy to deal with. It has been a roller coaster... we take it day by day.. literally. Lots of tears shed...not knowing what can/could happen. This mama bear has been stressed out trying to figure out what my next step is. I am hoping and praying for more answers on the 22nd.

I am hoping everyone has a very Merry Christmas! If you know a Chiarian or a person with EDS.. give them a hug. I am pretty sure they will appreciate!!!

Here are a few pics from this past couple weeks!!!

This is what pain does... he sleeps to help alleviate the pain. (Go Blues)

Christmas program

Ring bear duties