Monster mash and 12 tubes of blood!

Well the monster mash has come and gone! I am happy to say it was a success! We raised enough money to purchase the things on our wish list and then some, and I would like to think that everyone had fun. I am thrilled by all the people that helped out and that showed up, but have to admit was surprised by the people who didn't! It's an ongoing theme on this journey of the people who you hoped and thought would be there and aren't, Saturday was no exception. I fully realize that the people who were there are those that matter, but I continue to be surprised by the proportion of nearly strangers to family and friends. I haven't been able to fully understand this as of yet, but perhaps there will be meaning in it someday.

On Monday Makayla finally had an appointment with a geneticist,I was looking forward to this appointment simply because sometimes all it takes in my opinion is a pair of fresh eyes. In my mind I felt this was the last kick at the can in figuring out why Makayla is the the way she is. She does have a diagnosis of Cerebral Palsy, but this is more for the sake of paper work and resources. Makayla does not fit into a typical classification of CP, she has spasticity but more dynamic tone, mixed with episodes of low tone! It's complicated, the point is that people who have Cerebral Palsy have spastic tone that doesn't change. It is what it is. However all specialists who have sought after a proper diagnosis have failed and then moved on. I was relieved after the last batch of tests came back negative cause it was the last of the waiting, the last of the poking, the last of googling of crazy disorders and getting totally freaked out! I was at peace and acceptance that Makayla was who she was, and it was time to move on, no fixing her, no figuring out why, just living life.

The geneticist was so nice, so patient, and so sincere, ( a rare quality in a very busy specialist). She spent an hour with me, asking me questions, looking through Mak's records. She said 'that  little girl should have never waited this long to see me, I have seen enough children with cerebral palsy and she isn't one of them.' Perhaps i knew all of that but hearing it come out of her mouth was a huge wave of differing emotions. So here we go again! A very long list of genetic disorders, metabolic conditions, etc. 12 tubes of blood, 3 bottles of urine, a whole crap load of screaming, and a few days of exhaustion, and finally the wait! Yep right back to the racing heart for no reason, the restless sleeps regardless of how tired I am, the googling just to make myself crazy! Ugh! Her we go again!

Monster Mash!!!!!!!

Monsters Glamour Shot!

Days can seem long, weeks can seem endless, and years seem to fly by! There have been moments over the last 4 years when I doubted my ability to survive the day, there have been circumstances so tough I wanted nothing more than to quit, but when I look at this picture I know that somehow it was all worth it. Makayla's Journey has been unique and exhausting but here is what I have learned.

The people I thought would be there the most.... are not! I am just beginning to realize that perhaps it is not because they didn't want to be, but more because they didn't know how. People I did not know a short time ago are here because they know the pain so well, here in lies a bond not many will ever share, and I could never express how grateful I am for it. People I have never met....care, and blessings are disguised in the strangest of ways!

Next Saturday, July 23rd will be our first Monster Mash! A fundraiser for our little Makayla! We hope to give her the best life she deserves by getting her all things that will allow her to be a kid regardless the cost. Most parents buy their kids a bike for a hundred bucks, hers will cost fifteen hundred! Most parents buy a potty for twenty bucks, hers will cost 900. Most kids can go to any park and swing all day if they wanted, Mak can't and probably never will. A specially adapted swing $700. The lists go on and on and therefore MONSTER MASH! 

However I have found this asking for help thing to be very difficult, I have a  little problem with pride and control so allowing others in to help is way out of my comfort zone but it has allowed me to see some good in the world again. I had started to become hard and bitter, let's be honest it isn't easy watching every other mother walk hand in hand with their kid and talk about why God made flowers. Since deciding to plan this event people I have never met have offered to help in a whole bunch of different ways. It's been pretty awesome! So to all you kind hearted people that do exist, thank you! It couldn't have come at a better time!